UNIVERSITY OF CALGARY Striving to Live Well in Limbo:

UNIVERSITY OF CALGARY
Striving to Live Well in Limbo:
A Hermeneutic Exploration of the Family‘s Heroic Journey
Through the World of Chronic Cancer
by
Linda Christine Watson
A THESIS
SUBMITTED TO THE FACULTY OF GRADUATE STUDIES
IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE
DEGREE OF DOCTOR OF PHILOSOPHY
FACULTY OF NURSING
CALGARY, ALBERTA
MAY, 2014
© Linda Christine Watson 2014
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Abstract
Over the past 20 years, numerous therapies have emerged which are
changing the face of how we understand and treat advanced cancer. These drugs,
new therapeutic approaches, and improved outcomes have enabled more patients to
live longer with advanced cancer than ever before. However, the control achieved
through these interventions is neither permanent nor consistent, and maintaining
disease control in the advaced setting, requires ongoing treatments. More and
more often, the term chronic cancer is being used to characterize advanced (stage
III or IV) disease that is no longer curable, but is, or may become stable in
response to treatment (Berlinger & Lederman Flamm, 2009). In addition to
changing the language used to speak about incurable but treatable cancer, these
new medical interventions are changing how individuals and their families
experience this new phase of their cancer journey. In an effort to understand the
needs of this emerging population, this qualitative study, informed by Gadamerian
philosophical hermeneutics, was designed and conducted with the primary goal of
understanding how living with chronic cancer is experienced by families.
Unstructured interviews were conducted, recorded, transcribed verbatim, and
analyzed with that goal in mind.
The findings of this research highlight that living with chronic cancer is
substantially different than living with either curative cancer or dying of cancer.
Individuals and families who are living with incurable but treatable cancer inhabit
the space between these two extremes, which is metaphorically referred to in this
dissertation as the liminal world of chronic cancer. Participants spoke eloquently
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of their struggle to learn to live well in limbo. The metaphor of a heroic journey
has been utilized to organize and reflect both on the complexity and similarities of
the experiences that these families grappled with. This dissertation concludes by
identifying how these research findings apply to oncology nursing practice and
what innovations in education, professional development supports, and practice
roles would contribute to improved support for families who are living with
chronic cancer.
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Acknowledgements
To the families who shared their experiences:
Your generosity and honesty made this dissertation possible.
To my supervisor and friend, Dr. Shelley Raffin Bouchal:
Without your support, wisdom, guidance and encouragement I would not be poised to
complete this major accomplishment.
To my supervisory committee, Dr. Nancy Moules and Dr. Constance Barlow:
Thank you for your thoughtful comments, encouragement, and contributions that you
made to this dissertation. You made my dissertation stronger.
To the Social Sciences and Humanities Research Council of Canada:
Thank you for selecting me for a Doctoral Fellowship to complete this important
research. Your financial support created space for me to focus my time and energy
on completing this work.
To my colleagues at work:
For finding ways to support me in this work, either through allowing me to take time
away to write, by covering in my absence, or by your constant encouragement and
support. That we kept all our provincial projects moving forward through these past
few years is nothing less than remarkable given how many things were going on in
my world. I will forever be grateful for the support of my team.
v
To the Cancer Care Team who cared for us during our journey with cancer:
Thank you from the bottom of my heart for the care and support you offered my
family as we strived to live our lives well in limbo. Your work is beyond important.
To my parents, Frank and Phil Sopracolle:
Thank you for giving me roots.
These past few years have required incredible strength, perseverance, and resiliency
to finish this work. Just as a tree can stand tall in a hurricane if its roots run deep, I
know that the roots that you gave me allowed me to be strong and stand tall through
the difficult times over the past few years. Please know that I am who I am today in
large part because of your love and support.
To Doug, Marie, and Levi:
I wish we did not have to travel through the liminal world of incurable but treatable
cancer, but we did. Thank you for allowing me to walk beside you and help in
whatever way I could. I learned so much from you.
To my children, Adam, Tyler and Amanda:
Thank you for being so understanding with me.
I have been a grad student for more than half of your lives, and you have never once
made me feel bad for choosing to pursue my dream of becoming a ―Doctor Nurse.‖
Many times that meant that you had to share my attention with my academic work, or
worse yet, you had to do things without me because I had homework to do. You have
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inspired me to never give up. To know that you are proud of me and all that I have
accomplished was like fuel in my tank, allowing me to push forward.
To my wonderful husband, Darin:
Oh where do I begin? Nine years ago, when I broached the topic of going back to
school to do my Masters in Nursing, neither of us knew exactly what we were signing
up for, especially you, but you never wavered in the support, encouragement, and
love you gave me. I can say for certain that without you in my corner every step of
the way, I would not have succeeded in this endeavor. I will always remember that
you made space for me to focus on what needed to be done, especially in the last
push…when it was harvest time.
To my family, all of you:
And now it is done…I feel like this dissertation has been a true family effort.
We should all feel proud.
I hope our journey ahead is long, enjoyable, and full of good health, adventure, and
love.
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Dedication
Your purpose was to sail beyond the sunset, and you did it with strength, courage, and
bravery. You will always live on in our memories and through your contributions to
this dissertation. I felt your hand on my shoulder as I wrote.
Oh Doug…how we miss you.
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Table of Contents
Abstract ........................................................................................................................ ii
Acknowledgements .................................................................................................... iv
Dedication .................................................................................................................. vii
List of Figures ............................................................................................................ xii
Epigraph ................................................................................................................... xiii
Chapter One: The Call of the Topic......................................................................... 1
The Convergence of My Worlds............................................................................. 5
Relevance to Practice .............................................................................................. 6
The Purpose of this Study ....................................................................................... 9
Moving Forward: Trying to Understanding ......................................................... 11
Chapter Two: Situating the Topic .......................................................................... 14
Understanding Cancer as Incurable but Treatable ................................................ 16
Early beliefs and interventions for cancer ...................................................... 16
The age of cytotoxic treatments ...................................................................... 17
Questioning the effectiveness of cancer treatments ........................................ 19
Shifting the paradigm ...................................................................................... 21
Unraveling the cellular complexity of cancer ................................................. 22
Making cancer control a reality ...................................................................... 25
With Chronic Cancer New Challenges Emerge.................................................... 26
Continued unpredictability.............................................................................. 26
Complexity...................................................................................................... 28
Cost ................................................................................................................. 29
Winning the War by Redefining Success ............................................................. 31
Understanding the Experiences of Having Cancer ............................................... 33
Shifting from objective to experiential ........................................................... 33
Locating Cancer within the Family....................................................................... 34
Receiving the diagnosis .................................................................................. 36
Having cancer treatment ................................................................................. 39
When treatments are for disease control ......................................................... 45
Incurable but Treatable Cancer ............................................................................. 47
Living with advanced cancer .......................................................................... 47
Facing the end of treatment options ................................................................ 49
Once cancer treatments are stopped ................................................................ 52
Where to From Here ............................................................................................. 54
Chapter Three: Hermeneutics as Philosophy and Research Method ................. 56
The Historical Evolution of Philosophical Hermeneutics .................................... 58
Linkage back to Ancient Greece ..................................................................... 58
The evolution of philosophical thinking about understanding ....................... 59
Philosophical Underpinnings of Gadamarian Hermeneutics ................................ 63
Historically effected consciousness ................................................................ 64
Experience as formative .................................................................................. 65
ix
Fore-structures and prejudices ........................................................................ 67
Language as multiplicity ................................................................................. 68
The ontology of the in-between ...................................................................... 69
Exploring Method: Bringing Philosophical Hermeneutics to This Inquiry ......... 70
The address of the topic .................................................................................. 71
Ensuring Ethical Conduct ..................................................................................... 71
Recruitment of Participants................................................................................... 72
Gathering data through conversation .............................................................. 73
Conducting data analysis: Parts and the whole ............................................... 74
Dwelling with the topic ............................................................................. 76
Working it out in writing .......................................................................... 76
Composing the interpretation.................................................................... 77
Assessing interpretive rigor and validity .............................................................. 79
Opening a Space for Understanding to Emerge .................................................... 80
Chapter 4: Cancer as a Family Experience ........................................................... 82
Introducing the Families ....................................................................................... 83
The Wilsons .................................................................................................... 83
The Smiths ...................................................................................................... 84
The Olsens ...................................................................................................... 84
The Johnsons................................................................................................... 85
The Andersons ................................................................................................ 86
The Browns ..................................................................................................... 87
My Family....................................................................................................... 87
Using Metaphors to Make Sense of the Varied Family Experiences ................... 88
Life as a Journey ................................................................................................... 90
Living with Cancer as a Hero‘s Journey ............................................................... 93
The Crisis of diagnosis.................................................................................... 93
Moving beyond the crisis ................................................................................ 99
Chapter 5: Crossing the Threshold into an Unknown World ........................... 102
Venturing into the Chaos .................................................................................... 103
Chronic Cancer: It is about the Journey not the Destination ............................. 107
The Emergence of Structure Out of the Chaos ................................................... 110
Learning to navigate by the stars .................................................................. 110
Finding a guide ............................................................................................. 113
Finding a New Normal........................................................................................ 115
Chapter Six: Finding a New Everyday ................................................................ 117
Everyday Heroism: Being Initiated into the World of Chronic Cancer .............. 118
Persevering in the face of death—On being strong and resilient.................. 122
Living in the moment--On selflessness and caring ....................................... 126
Doing what it takes—On being smart and reliable ....................................... 128
Hope for a better day—On optimism and courage ....................................... 131
Constant vigilance—On details and attention............................................... 134
Recognizing a New Everyday: On being Transformed ...................................... 137
Being Unable to Return: Living with Chronic Illness ........................................ 138
x
Chapter 7: Is Hitchhiking a Fitting Metaphor for Life with Chronic Cancer? 140
Exploring the Fit of the Hitchhiker Metaphor .................................................... 142
Hitchhiking as an individual ......................................................................... 142
Hitchhiking with a family ............................................................................. 147
Walking to their destination .......................................................................... 152
Facing Chronic Cancer‘s Difficult Realities ....................................................... 154
Chapter Eight: Striving to Live Well in Limbo .................................................. 156
Living in Limbo .................................................................................................. 156
Understanding life in limbo .......................................................................... 159
Keeping illness in the background ................................................................ 163
Living in Limbo as Success ................................................................................ 166
Limbo‘s Transformative Ability ......................................................................... 170
On Being Transformed ....................................................................................... 172
Chapter Nine: Improving Care for Families—Implications for Practice ........ 174
Reflecting and Learning ...................................................................................... 176
Finding a new family narrative—A heroic journey ...................................... 176
Exploring experiences on this heroic journey............................................... 179
Developing insight—Becoming wise ........................................................... 181
Looking beyond the successes ................................................................ 182
Balancing fears and hopes ...................................................................... 182
Accepting limitations .............................................................................. 183
Reclaiming joy ........................................................................................ 183
Nurturing practical wisdom .................................................................... 184
Acknowledging the full journey through chronic cancer ............................. 185
A more comprehensive narrative ............................................................ 185
Shifting from ―with‖ to ―through‖ .......................................................... 186
Holding the complexity........................................................................... 187
Living well in limbo for as long as possible ........................................... 187
Preparing for the ultimate challenge ....................................................... 188
Listening to experience to improving the system ......................................... 189
So What? ............................................................................................................. 189
Empowering families to live well—Enhancing the role of oncology nurse . 191
Families as the unit of care ..................................................................... 193
Advocating for meaningful care for the family ...................................... 194
Inputs to improve quality of life—The role of supportive care .............. 196
Acknowledging and addressing incurability ........................................... 198
Expanded scope of oncology nursing education ..................................... 200
Integrating new knowledge into the curriculum ............................... 200
Education to promote person centred care ........................................ 201
How to become someone who can make good decisions ................. 201
Utilization of advanced practice nursing roles for chronic cancer care
delivery ................................................................................................... 203
Nursing leadership—Creating a moral cancer care community ............. 205
Areas of further nursing research around this topic ...................................... 206
Limitations of this research ........................................................................... 207
Concluding Remarks ........................................................................................... 208
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References ................................................................................................................ 213
Appendix A: Letter of Introduction-Adult .......................................................... 249
Appendix B: Child Information Sheet .................................................................. 250
Appendix C: Consent Form—Adult .................................................................... 251
Appendix D: Consent Form—Child..................................................................... 256
Appendix E: Recruitment Poster .......................................................................... 261
xii
List of Figures
Figure 1: The hero‘s journey...................................................................................... 92
Figure 2: The family‘s heroic journey through chronic cancer ............................... 180
Figure 3: A matrix model for successful chronic cancer care ................................. 196
xiii
Epigraph
Facing the Future
Every journey begins
with but a small step.
And every day is a chance
for a new, small step
in the right direction.
Just follow your Heartsong.
Mattie Stephanek
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Chapter One: The Call of the Topic
Beneath the surface of ordinary life—the surface of productive, functioning,
busy lives—there lurks an abyss. Beneath the surface of healthy agent bodies
the abyss of flesh stirs, an abyss of vulnerability that can swallow up every joy.
The abyss is forced to the surface—by the desperate circumstances in which
one lives, by personal crisis, by a moment that drives us to the rail of life, that
forces us to ask what is going on, what is happening…The bottom can fall out
from the world in a thousand ways. That is disaster, the danger of
irreparable loss, the trigger that sets off the networks of obligation. (Caputo,
1993, p. 235)
On December 9th, 2011, the bottom fell out of my family‘s world. That was
the day we found out that my brother in law Doug had lung cancer, which had spread
to his brain, bone, and lymph nodes. Doug was a healthy, fit man of 50 who was a
non-smoker and a vegetarian. He ran marathons and ate organic vegetables. It
seemed impossible that he had terminal lung cancer. All our lives changed the
moment he was diagnosed. Our belief that there was some invisible ethos to life that
would always keep things in order was shattered. We had to face that there was no
answer to why Doug had cancer. It just happened. That day we reluctantly began a
new journey as a family, the journey of living with incurable but treatable cancer.
We struggled daily to accept Doug‘s diagnosis, to do what we could to support each
other, and to cope with our personal anguish at being unable to change the fact he had
cancer.
That cancer would enter my family was never unimaginable. In fact, I
probably had a hyper awareness of my family‘s risk of getting cancer because I have
worked with cancer patients my entire career. In the course of my every day work, I
have witnessed the brutal reality that cancer happens all the time. I also know that
cancer does not play favorites; it can occur in the richest or the poorest, in the oldest
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or youngest, in the skinny or the obese. I also recognize that there is no way to totally
remove the risk of getting cancer. Cancer just happens. It is estimated that every
second Albertan will face cancer in their lifetime (Alberta Health Services [AHS],
2012). However when cancer happened in Doug‘s body— our Doug, Marie‘s Doug,
Levi‘s Doug, it was unfathomable. Cancer was no longer just out there as something
that other families dealt with, it was something that our family was dealing with. We
were joined in a common bond of suffering as we all faced the reality that Doug had
incurable cancer.
As much as cancer‘s arrival in my family was unexpected and shocking, it
was also uncanny. Six years previous, I had set out to understand the newly emerging
experience of living with cancer as incurable but treatable through my graduate
studies. The topic had addressed me (Gadamer, 1989) through my work of caring for
cancer patients and their families. In the beginning of my oncology nursing career,
patients were offered one or two treatment protocols, and if the disease progressed
patients were transitioned to palliative care. Over the years as new treatment options
for advanced cancer emerged, more treatment options became available. Soon
advanced cancer patients were receiving four, five, or even six different treatment
protocols in sequence for disease control. As the number of treatment options
increased, so did the length of time that people were receiving ongoing treatments.
Although I marveled at how these new treatments were helping people live
longer even when we could not cure their disease, I was troubled that many patients
seemed unaware that as one protocol failed and they started another, the chance that
their cancer was going to be cured became more and more distant. I remember one
3
patient in particular who had been transitioned to the fourth different treatment
protocol for her advanced breast cancer. When I inquired as to what type of side
effects she was experiencing, she remarked that she was having very few. She
wondered aloud why the doctor had not switched her to this type of treatment sooner
as it was so much easier for her to tolerate than previous treatments. I remember
being unsure how to answer her question. Did she not realize that this fourth line
treatment was less effective at controlling breast cancer than the first three types?
Did she understand that if it did not work there would be nothing else left to offer her
for disease control? I cannot remember how I answered her question, but I remember
wondering if she realized that her disease was getting worse, and that her time with
her family was growing short.
As the number of treatment protocols being offered grew, the length of time
that I provided care for these patients stretched out. I started to know my patients and
their families better. I knew when they were planning a holiday, or when their kids
were graduating. We celebrated birthdays and milestones in the chemotherapy clinic.
Hugs were exchanged often and tears were shed when long term patients would reach
the end of treatment options. I remember the shock when patients and families were
told there was no further treatment for their disease. Again, I wondered how they
could be shocked. Did they not realize that for months, maybe years the treatments
they had been receiving were for control, not cure? I became curious about how
patients with advanced cancer perceived the intent of their treatment. I began to
listen for dialogue between the patient, family, and the cancer care team that moved
beyond the treatments and side effect management, to address the chronic nature of
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the treatments, or the fundamental incurability of the cancer. I soon recognized that
these types of conversations happened infrequently.
What called me to this research was beyond my ―wanting and doing‖
(Gadamer, 1989, p. xxvi). I became very curious about this experience. I felt
obligated to try to understand it in order to care more effectively for these patients
and their families. Caputo (1993) explained that obligation is a feeling of being
bound to something. He positioned obligation as a force that comes over you, that
demands a response. Obligation is not something that first asks for one‘s consent to
be bound to it, but instead it is something that happens. The obligation to try to
understand this difficult experience and improve the quality of care that I could offer
was all around me, on every side of me, constantly tugging at me, calling me to action.
In the winter of 2010, in response to the call of the topic, I wrote my doctoral research
proposal as one possible approach to answering the following research question:
―How might we understand the experiences of families living with incurable but
treatable cancer in their midst?‖
Through my experiences as an oncology nurse and as a researcher, I had a
deep bond with this topic and subject matter, and yet even with my broad experience
base, I knew there was much yet to be understood. Furthering my understanding of
this topic required an approach that could operate in the space between what I already
knew and what was beyond my knowing (Gadamer, 1989). I recognized the
impossibility of proceeding as if I did not already know something about this topic.
As a result, I was drawn to utilizing Gadamarian philosophical hermeneutics to guide
5
my inquiry because hermeneutics starts ―from the position that a person seeking to
understand something has a bond to the subject matter‖ (Gadamer, 1989, p. 295).
The Convergence of My Worlds
The very idea of a situation means that we are not standing outside it and
hence are unable to have any objective knowledge of it. We always find
ourselves within a situation and throwing light on it is a task that is never
really finished...The horizon is the range of vision that includes everything
that can be seen from a particular vantage point. (Gadamer, 1989, p. 301)
I wrote my PhD proposal and conducted all family interviews as someone
who knew something of this experience because of my academic studies and my
work experience. However, seven short days after I conducted my last family
interview, I began living my topic because of Doug‘s diagnosis. When we heard that
Doug‘s cancer was incurable but there were treatment and therapeutic interventions
that could control and slow the disease‘s progression, I began living the experience
too. From that point onwards I could no longer think of this topic solely from the
position of researcher or oncology nurse, but rather I had to proceed from my position
where all three realities intersected. The convergence of my worlds forever changed
what would live on to become my dissertation. That I had completed all the family
interviews prior to Doug‘s cancer diagnosis was fitting, as I was able to listen and ask
questions from the position of researcher and oncology nurse. My challenge though,
as I proceeded into analyzing the data was to look beyond my own experience, not to
look away from it, but rather to see it as part of a larger whole (Gadamer, 1989).
Although my own family‘s journey with incurable but treatable cancer did not
stretch out as long as that of my participants, I do believe that my own personal
experience allowed me to understand this topic differently than I would have been
6
able to if I had not experienced this journey first hand. I am aware that my own
personal experience inevitably closed off some possibilities, but I also know that
because of my experiences I had more familiarity with the topic and understood the
transcripts differently. Gadamer‘s written words were comforting to me; ―it is
enough to say that we understand in a different way, if we understand at all‖ (1989, p.
296). What is written in this dissertation is not about my family‘s experience or the
individual experiences of any of the families who participated, but rather it is about
what can be known of this topic of living with incurable but treatable cancer through
shared experience.
Relevance to Practice
This topic‘s relevance to practice has many layers. First, this topic is relevant
to everyone because cancer is a reality that all people must face. Data from Alberta‘s
cancer registries shows that every day approximately 43 individuals in our province
learn that they have cancer and 16 die from some form of the disease (AHS, 2011).
Globally, cancer is the leading cause of disease with over 14 million new cases of
cancer diagnosed in 2012 (International Agency for Research on Cancer [IARC],
2014). Every individual on earth, because of intrinsic continual cellular division is at
risk of getting cancer. Cancer care professionals and their families are no different.
That cancer could enter their lives at any moment is undeniable. There is no behavior,
diet, or immunization that can remove anyone‘s risk entirely. At any point in time,
anyone could find their world turned upside down by a cancer diagnosis and
subsequent treatments. This is why this topic is relevant to everyone.
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However specifically for nurses, there are other layers of relevance. Nurses,
by profession are people who have chosen to use their knowledge, skills and efforts to
promote wellness in populations (Montague, Piazza, Peters, Eippert, & Poggiali,
2002). The desire to care or make a difference for others is often part of the equation
of what motivates one to become a nurse (Wengstrom & Ekedahl, 2006). As cancer
is a population health issue, all nurses need to know something about preventing it,
identifying it, caring for those who are living with it, or dying of it. As well, the issue
of caring for those who are impacted by its occurrence within their family is relevant
to nurses too. Given the current incidence and prevalence of cancer, it would be hard
to find a nurse in any setting that has not provided care to either someone with cancer
or a family member of someone with cancer. Knowledge about cancer and the
experience of individuals and families who are living with it may augment the nurse‘s
ability to provide meaningful care in the nurse – patient/family interaction
(Wengstrom & Ekedahl, 2006).
Within the specialty care area of oncology, this topic is extremely relevant to
nurses. Nurses are the largest segment of the workforce within ambulatory and
inpatient cancer care facilities, and they play a pivotal role in managing the day to day
care needs of individuals and families living with cancer. Further to that, their
relationship with the patient or family often directly impacts the perception of
satisfaction with the care they have received (Radwin, 2000). In fact, research has
shown that cancer patients often perceive oncology nurses as knowledgeable and
caring professionals who are helpful to them in figuring out how to manage their
illness and symptoms (Radwin, Farquhar, Knowles, & Virchick, 2005).
8
The final layer of relevance to oncology nursing is that the growing trend that
underpins this topic is driving significant changes to the day to day work of oncology
nurses. There is growing recognition that the emergence of new treatment options,
therapeutic approaches and better outcomes are combining to creating a new chronic
trajectory for cancer (Berlinger & Gusmano, 2011; Cottrell & Dranitsaris, 2005;
Phillips & Currow, 2010). This relatively new advancement in therapeutic capability
is precipitating a paradigm shift in cancer care from the current ―cure focused‖
treatment paradigm where treatments are designed to obliterate the diseased cells and
success is defined by achieving a cure, to a new ―chronic‖ paradigm, in the advanced
stages, where the goal is cancer control and success is defined by extending the time
to disease progression (Berlinger & Gusmano, 2011; Berlinger & Lederman Flamm,
2009; Bruck, 2011; Mukherjee, 2010; Wallis & Park, 2007; Witter & LeBas, 2008).
More and more often now, the term chronic cancer is being utilized to characterize
advanced (stage III or IV) disease that is not curable, but is, or may become stable in
response to treatments (Berlinger & Lederman Flamm, 2009). In an effort to
continually draw attention to the tension around chronic cancer, the phrases
―incurable but treatable‖ and ―chronic cancer‖ will be used interchangeably. The
rising incidence of cancer, combined with this movement towards a chronic trajectory
(Abbey, 1997), has the potential to reshape healthcare worldwide (Bengoa, 2003), but
more importantly to this dissertation, it has the potential to reshape the work of
oncology nursing.
As these new therapeutic options extend the lifespan of patients with
advanced cancer, the nurse-patient relationship has a growing potential to impact
9
patient and family satisfaction with care. In the past, oncology patients would have
received nursing care in the acute phase, again if their cancer reoccurred, and then in
the last stage of life as they progressed towards dying, but now patients are receiving
ongoing oncology nursing care for months or years as they live longer because of
continuing treatments. The nurse/patient/family relationship has become an integral
thread in the tapestry of living with incurable but treatable cancer, and has a
significant role to play in improving the wellbeing of this population (Watson, 2008).
Although I have focused on the relevance of this topic to oncology nursing, it
is important to note this topic is relevant to the entire cancer care inter-professional
team. As no single professional can meet all the complex needs of patients and
families, having a team of various professionals who collaborate to meet common
care goals has been identified as a key indicator of a high quality cancer care system
(Barr, Koppel, Reeves, Hammick, & Freeth, 2005). However, due to the scope of this
dissertation, and my professional background as an oncology nurse, I have chosen to
write this dissertation as a conversation with oncology nurses.
My Purpose in this Study
Only the development of compassion and understanding for others can bring
us the tranquility and happiness we all seek. (Dalai Lama XIV, 2013)
My major objective in this study is to make visible the complexity that
families experience when living with cancer as incurable but treatable. As the ability
to control advanced cancer for an extended period of time is a relatively new
development, the first step of improving the experience of patients and families with
incurable but treatable cancer is to create some general level of familiarity with the
experience. There currently is a general lack of awareness with this experience
10
because of its newness. Gadamer (1989) wrote that ―youth [or anyone new to
anything], demand images for its imagination and for forming its memory‖ (p. 18).
In this context both patients and families, and the cancer care team itself are new to
this experience, and so vivid images, formulated through language are helpful to
create a sense of familiarity with the topic.
Etymologically, the word familiar gathers its meaning from the Latin word
familiarius which means to have a close acquaintance or hold intimate knowledge of
something (On-line Etymology Dictionary, 2013). Through listening, hearing,
experiencing, interpreting, articulating, defining, and writing about this new and
emerging experience, I have become more familiar with this topic. I have formulated
the interpretive chapters as a conduit to familiarity, so that readers of this text may
have an opportunity to witness the families‘ experiences, and to assimilate some of
their wisdom without having lived it themselves or cared for this population (Ohlen,
2002). The acquisition of this type of knowledge forms an important foundation,
which can enhance the cancer care professional‘s ability to connect with these
individuals, and provide meaningful care to this growing population (Ohlen, 2002).
Through daily life and professional work, oncology nurses are repeatedly
exposed to people whose lives have been torn to shreds by the diagnosis of incurable
cancer but who collectively hang on to the thread of hope that maybe a new treatment
can help. The predominant focus of nursing care for this population has been on
managing the symptoms of the disease and therapies, but this acute care focus does
not fully correlate with providing care for individuals and families long term.
Therefore my secondary objective in this study is to identify modifications in
11
oncology nursing practice, nursing education, and identify areas of future research
that could facilitate the delivery of more meaningful longitudinal care to families
living with incurable but treatable cancer.
Moving Forward: Trying to Understanding
Even though cancer can happen to anyone, at any time, and can cause tragedy
from which a family may never fully recover, its pervasiveness does not erase our
obligation to try and make a difference for those who are struck by this disaster. It is
through a familiarity with the topic that we can prepare ourselves to hear the calls for
help from those living this experience (Caputo, 1993). One approach to become
familiar with this experience is reviewing what others have written about the
experience. In chapter two, I will situate this topic in relation to the historical
progression of how cancer has been understood, how treatments have evolved, and
how this has contributed to the emergence of this topic. A second area of literature
that will be explored revolves around research that delves into the experience of
living with cancer, both as an individual and as a family. The goal of the second
chapter is to establish an initial familiarity with this topic from various perspectives.
In chapter three, I situate the inquiry within the interpretive paradigm, and
explore the underpinnings of Gadamarian philosophical hermeneutics (1989).
Although philosophical hermeneutics does not offer a set of rules to follow when
conducting an interpretive inquiry, Gadamer outlined a process of understanding that
I applied to my efforts to understand this topic differently. In this chapter, I also
outline the process that I followed during the research development, while conducting
the interviews, during data analysis, and the interpretive writing phase.
12
In chapters four, five, six, and seven, I focus on the interpretive findings from
the study. In chapter four, the families who participated in this study are introduced,
and the metaphor of a hero‘s journey which has been used to frame the experience of
living with incurable but treatable cancer is discussed. Throughout the interpretive
chapters, the metaphor of a journey is threaded throughout, to highlight the tension
between what is similar across experiences and what is unique to each experience.
Aspects of similarity include key events such as the crisis of diagnosis, balancing
incurability with treatability, and striving to find a new every day. Chapter six
focuses on aspects of everyday heroism within the family that facilitate normalization
and coping with the experience. Chapter seven explores the experience of being
reliant on ongoing treatments to living longer, proposing that metaphorically this is
similar to hitchhiking.
In chapter eight, I offer the cumulative interpretation of the family experience
of living with incurable but treatable cancer as a quest to master life in limbo. Unlike
the typical structure of a hero‘s journey where the hero returns to their home to share
their wisdom gained from their journey, families living with chronic cancer are
unable to return to their pre-cancer world. Rather they are in limbo somewhere inbetween the possibility of being cured of cancer and dying of it. Learning to live well
in limbo is a transformative experience that requires the family to learn from each
sequential experience on their journey.
Chapter nine focuses on the implications that this topic and research has for
oncology nursing practice, education and highlights areas for future research. As
these families inhabit an unfamiliar, and relatively uncharted world it is imperative
13
that awareness of this experience be fostered within cancer care and in society at large.
This will depend on the acknowledgement that living with incurable but treatable
cancer is in itself a new chronic trajectory within the cancer journey. Providing
quality care for this population will require the development of a collective familiarity
with this experience, and recognition of the unique obligations within cancer care
related to this population‘s treatability, incurability, longevity, and the impact all
these factors have on the family. The relatively recent emergence of the ability to
control advanced cancer for extended periods of time opens many areas for future
research including specific research as to the role of both the specialized oncology
nurse and the oncology advanced practice nurse in relation to the provision of high
quality, family centric, chronic cancer care to this population. Reflections, limitations
of the research, and final remarks are also offered in chapter nine.
14
Chapter Two: Situating the Topic
The subject matter appears truly significant only when it is properly portrayed
for us. Thus we are certainly interested in the subject matter, but it acquires
its life only from the light in which it is presented to us. (Gadamer, 1989, p.
285)
In order to understand the family experience of living with cancer as incurable
but treatable, it is important to explore the historical context that has allowed this new
phenomenon to emerge. Gadamer (1989) used the phrase ―historically effected
consciousness‖ (p. 301) to illuminate that any attempt to understand a phenomenon is
always and already affected by the history of that phenomenon, whether the inquirer
is aware of it or not. The history of the phenomenon determines what seems
worthwhile to inquire about. However, if we take the immediate presentation of the
phenomenon‘s history as the whole truth, how the phenomenon has been influenced
by a web of historical events can be lost. Gadamer (1989) argued that our need to
become aware of the effects of history is urgent as historical legacies are always at
play in situations when understanding is sought.
Each reader of this dissertation will come to this topic with their own
historically effected understanding of cancer and the experience of living with it. For
example, readers who have received professional educated about cancer will be
influenced by their academic preparation, and the types of issues, and literature they
have been exposed to. If they have provided care to patients and families with cancer,
this experiential knowledge will also influence their understanding. On the other
hand, readers who are not healthcare professionals may have had some type of
personal experience with this topic, and will bring that experiential knowledge with
them in their efforts to understand this topic. Even if the reader of this dissertation
15
has neither cancer specific education nor personal experience with cancer, they will
have been exposed to knowledge of cancer through media or literature, as it is a
pervasive topic in our modern day culture. There is no way to view this topic from
outside this historically effected reality.
As cancer, and the quest to understand and treat cancer, has been a part of the
human story for as long as recorded history exists, I have begun this literature review
by situating this topic in relation to the historical progression of how cancer has been
understood, how treatments have evolved, and how this has contributed to the
emergence of this topic. As the scientific understanding of the disease and our
modern ability to control disease progression has evolved, what successful cancer
care looks like has also shifted, therefore literature exploring this evolution has been
included. As the ability to control advanced cancer for increasing lengths of time has
emerged, so to have new challenges, therefore literature that explores these
challenges has been included in this review.
Another area of literature that is explored in this chapter revolves around
research that delves into the experience of living with cancer, both as an individual
and as a family. A particular focus has been directed to literature that explores how
the experience of living with cancer changes across the disease trajectory. As every
cancer patient, regardless if their disease is curable or not, begins their disease
trajectory at the point of diagnosis, the literature review begins there. Next, the
review moves on to research that explores the experience of having treatments, and
then focuses specifically on research about having treatments for disease control, not
cure. Finally, literature that explores the individual and family experience of reaching
16
the end of treatment is reviewed. Hearing that there are no further treatment options
to control the disease is ultimately the end of the chronic phase of cancer control.
There is a plethora of research about the experience of individuals and families when
they reach the very end stages of their cancer journey, and the focus of care is on
symptom management and comfort, but that field of literature is not included in this
review.
Understanding Cancer as Incurable but Treatable
Early beliefs and interventions for cancer. The earliest known written
reference about cancer dates back to Egypt in 2600 BC, when Imhotep, an ancient
Egyptian physician, wrote of a bulging mass on the breast of one of his patients.
According to his writing, the mass was hard and cool to touch, and there were no
therapies to relieve the pressure (Tiwari & Roy, 2011). The next written record found
was from around 440 BC, when the Queen of Persia experienced an unusual bleeding
lump in her breast. The Queens‘s physicians tried to treat this sore to no avail, finally
in an act of desperation she instructed her servant to cut her breast off with his sword
(Mukherjee, 2010). Around the same time period, Hippocrates wrote about a disease
that caused swelling and the enlargement of surrounding blood vessels and how that
physically resembled a crab digging into the sand. From that point forward this type
of disease became known as karkinos, which was Greek for crab (Wishart, 2007).
Around 160 AD, a Greek physician named Galen theorized that cancer was
caused by an excess of black bile that could not escape from a certain site and thus
pooled into a hardened mass (Mukherjee, 2010). Galen‘s theory of cancer as a
systemic problem influenced medicine for centuries, causing ancient physicians to
17
think that local intervention was nonsensical. It was not until the 1700s, when the
science of anatomy was established that Galen‘s theory of black bile was disproven
(Healy, 2007). By the 1800s, the discovery of the microscope, bacteria, antiseptic,
and anesthesia opened up new surgical possibilities (Wishart, 2007). Between 1850
and 1950 numerous surgical procedures were developed to excise cancer.
Unfortunately, even though the surgical interventions showed benefits initially, in
many situations the cancer would reoccur, either near the surgical area, or distantly.
Surgeons began doing more radical surgical interventions, but the cancers still came
back. The unreliable outcome of surgical interventions drove physicians to wonder if
a systemic treatment could be used in conjunction with or separate from surgery to
improve cure (Mukherjee, 2010).
The age of cytotoxic treatments. In 1943, an accidental discovery sparked a
new avenue of cancer treatment. During the Second World War, physicians noticed
that soldiers who were exposed to nitrogen mustard gas had shocking drops in their
white blood count. This direct causal relationship between exposure and a decrease
in white blood cell numbers captured the imagination of physicians who cared for
leukemic patients (Nathan, 2007). They began to wonder if, in controlled doses,
nitrogen mustard could bring the abnormally high number of white cells in a
leukemic patient back down to normal. By 1946, the first research article was
published about the testing of nitrogen mustard on leukemic patients and the
temporary reduction of white blood cells that could be achieved (Gilman & Philips,
1946).
18
This discovery ignited the imagination and creativity of scientists around the
world. The hope that other chemicals would be found with similar effects on cancer
cells triggered an on slot of research to find the cure for cancer. Over the next forty
years many drugs were tested, remarkable discoveries were made, but many dismal
failures occurred (Sparreboom & Verweij, 2009). By the late 1950s, numerous
chemotherapies had been shown to be successful in destroying cancer cells, but the
success was most often short lived. The majority of cancers reoccurred and
progressed after some time. Physicians began experimenting with combining
different drugs to see if that would improve the effectiveness of the treatments (Frei et
al., 1958). It did not take long to establish that combining chemotherapies increased
the effectiveness of the treatment, but unfortunately it also made those receiving the
treatments sicker than ever before. Many patients died from these early treatments
(Mukherjee, 2010; Nathan 2007).
Chemotherapy‘s primary route of action is on rapidly dividing cells.
Chemotherapy capitalizes on the fact that all cancers share a characteristic of rapid
cellular division. Unfortunately though, chemotherapy is not selective. Instead, it
affects all rapidly dividing cells in the body. This has always been a major limitation
of chemotherapy, as the broad impact of chemotherapy significantly affects normal
healthy rapidly dividing cells in areas of the body not affected by cancer, such as the
bone marrow, and the lining of the gut and mouth (Astrow, 1994). Over the years,
physicians have learned to balance the dose of chemotherapy with tolerable level of
damage to the healthy cells, so as not to kill the patient while trying to kill the cancer
(Mukherjee, 2010). This dosing concept, that chemotherapeutic drugs should be
19
administered at the maximum dose that an individual can tolerate without causing
severe, life threatening toxicities still guides practice today (Sparreboom & Verweij,
2009).
Over the years, many chemotherapies showed promising results initially, but
repeatedly these positive initial results were not sustainable (Alt, Kellems, Bertino, &
Schimke, 1978). These early responses recommitted the researchers to refine and
redevelop their treatments further. There was an unwavering belief that with more
rigorous, coordinated research, a cure would be found. In 1971, President Nixon
declared war on cancer (The National Cancer Act, 1996) which gave rise to a broad
coordinated, targeted approach to cancer research, where clinical trials were
conducted across numerous sites, with hundreds if not thousands of patients being
enrolled (De Vita & Chu, 2008). Trends of response, side effects, and reoccurrence
were studied in hopes that further refining of the protocols would improve cure rates
(Sparreboom & Verweij, 2009). During those years, the overarching belief that a
cure could be found was unquestioned (Schipper, Turley & Baum, 1996).
Questioning the effectiveness of cancer treatments. In 1986, an article
titled Progress against cancer, published in the New England Medical Journal shook
the world of cancer research to the core (Bailar & Smith). These authors set out to
assess the overall progress that had been made against cancer in the years between
1950 and 1982. National data bases in the United States were examined for
epidemiological statistics around mortality, incidence rates, and survival rates. The
conclusion drawn was that despite massive growth of private and governmental
support for cancer research, and the development of numerous treatment protocols for
20
various kinds of cancer, there had been a increase in the age adjusted mortality rate
across the entire population of Americans who were diagnosed with cancer in that
time period. The authors proclaimed the war against cancer was being lost (Bailar &
Smith, 1986).
This article was highly criticized by cancer researchers as being premature.
Critics argued that the impact of scientific advancements had not had enough time to
show its benefits in such vast populations. Another criticism was that analyzing
mortality data for all cancers combined was not appropriate as different age groups,
and cancer types have such different trends, and treatment options (Bailar & Gornik,
1997). As the tension between the statistical data and the researchers grew in terms
of how progress against cancer should be measured, the National Cancer Institute
convened a committee to make a recommendation on how to gauge success (National
Cancer Institute [NCI], 1990). The recommendations set forward included that
success must be defined in three general areas: direct measures such as age adjusted
mortality and incidence, estimates of cancer causing behavior change such as a
reduction in tobacco usage, and advances in knowledge that may lead to future
change.
In 1997, Bailar and Gornik published an extension to Bailar‘s earlier article,
this time they titled it Cancer undefeated. In this article, they took into consideration
12 more years of data, and yet they still concluded that the enormous investment to
find a cure for cancer was still statistically, a failure. They did concede that there
were certain areas where important progress had been made, notably childhood
cancers, leukemia, and Hodgkin‘s Lymphoma, as well they recognized improvements
21
in palliation for advanced cancers, but overall, they found the impact on mortality
was minimal. The authors concluded that the logical next step was to shift the intense
focus from finding treatments to preventing cancer in the first place.
With these discouraging statistics as the backdrop, researchers began to
question if what was needed was a redefinition of what winning the war on cancer
could look like. Up until the early 1990s, treatments were focused on total
eradication of the cancer cell within the body (Sparreboom & Verweij, 2009). The
conventional treatment model which revolved around the combined use of surgery
and radiation therapy to obliterate localized tumor cells followed by cytotoxic drugs
to destroy any cellular remnants of cancer, which was the main stay of treatments
since the 1940s, was questioned. Between 1993 and 1995, a series of pivotal articles
were written by Schipper, Goh, and Wang who proposed that instead of focusing on
the total eradication of cancer cells, maybe a focus on controlling cancer‘s
progression may be more feasible (1993a; 1993b; 1995).
Shifting the paradigm. Schipper et al., (1993a; 1993b; 1995) proposed that
the war on cancer was not lost, but rather what defined success must be readjusted.
Schipper et al. argued that if the focus of research shifted from the historical end goal
of finding a cure, to a focus on developing therapies that could control the cancer
cell‘s ability to grow, then success could be found. In this proposed alternate
paradigm, success in the war against cancer could also be defined as sustained control
of disease progression (Astrow, 1994; Schipper et al., 1993a, 1993b; 1995; Schipper,
Turley, & Baum, 1996). Schipper et al. (1995) proposed that the cytotoxic, curative
model of cancer therapy was flawed because it was based on a false analogy that
22
cancer was a disease of invasion, similar to diseases caused by bacteria, viruses, and
exposure. Instead Schipper et al. (1996) argued that cancer cells were not foreign
invaders, but rather intimate parts of the human being themselves. As cancer can
originate from a mutation within a single human cell, and the human body often
perceives these mutated cells as self, and not as invaders, Schipper et al. (1996)
argued it was irrational to think that cancer could ever be totally eradicated from the
host. Rather, Schipper et al. (1996) proposed a new model for cancer control that
focused on control of progression, restoration of body function, and the end goal of
enabling patients to live longer with their cancer.
However, Schipper and his colleagues were ahead of their time. When these
articles were published, there was little evidence that such control could be achieved
(Astrow, 1994). The editor of the Lancet, a very highly respected clinical medical
journal, offered the following skeptical thoughts in his editorial in 1994.
Is this proposal plausible? Could an altered mindset break the stalemate in
cancer therapy?...More challenging is Schipper‘s assertion that an established
cancer can be ―tamed‖ without being destroyed…Schipper and colleagues
have made a strong case that cytotoxic chemotherapy holds inherent
limitations, but can show scant evidence at this point that their proposed
regulatory model would prove more successful…We can only await further
development in cancer biology and experimental therapeutics to put these new
thoughts to the test of clinical applicability. (p. 495)
Unraveling the cellular complexity of cancer. Reading Astrow‘s twenty
year old editorial in today‘s world is uncanny. It is hard to believe that in just 20
23
years so much has shifted. Over the past two decades, more and more researchers are
coming to the conclusion that finding a cure may be a naïve hope, because of the
growing awareness of the cellular complexity of cancer (Sparreboom & Verweij,
2009; Tiwari & Roy, 2011; Wallis & Park, 2007). Astrow‘s call for clinical evidence
that cancer control was plausible definitely has been answered. Through shifting the
focus of research from the search for a cure to a quest to control the disease, focused
attention has been aimed on understanding the internal cellular environment of both
the human cell, and the cancerous cell. This has led to remarkable new knowledge,
which in turn has been harnessed to create innovative new treatments.
With a concerted international effort, by 2003, the entire genetic sequence of
the human genome had been mapped (Tiwari & Roy, 2011). Scientists from the
United States, France, Germany, Japan, and China worked collaboratively to identify
the 25,000 to 30,000 human genes. Since then, all genetic information found has
posted with free access on the internet. These identified genes are made up of over 3
billion letters in the genetic code. Scientists have also identified more than 1.4
million single nucleotide polymorphisms. These single changes to the arrangement of
the genetic code letters underpin the cellular uniqueness of each person (Sparreboom
& Verweij, 2009). In 2005, the next step of genetic exploration was initiated under
the project title Cancer Genome Atlas (National Institute of Health, 2012). This
ambitious international project, which is still underway, aims to catalogue the
genomic changes in all the cancers known to humans. It is estimated that the impact
of this second phase of the project will dwarf that of the first, with probable impacts
on cancer screening, diagnosis, treatments, and prevention (Tiwari & Roy, 2011).
24
By 2006, the first sequencing of a cancer genome was published (Sjoblom et
al., 2006). This early work focused on mapping breast and colorectal cancer genomes.
The complexity that was found within these genomes was astounding. The research
team focused on mapping thirteen thousand genes in eleven different breast and colon
cancers and found more unique mutations than expected. For example, in each
individual specimen of breast and colon cancer between 50 to 80 genes on average
were found to be mutated. In one particular breast cancer sample, 127 genes were
mutated. Even within two samples taken from similarly classified tumors, the
mutations between these two samples were not the same. A lead researcher involved
in this work summed this up well. ―Cancer genome sequencing validates a hundred
years of clinical observations. Each patient‘s cancer is unique because every cancer
genome is unique‖ (Mukherjee, 2010, p. 452). As similar as normal healthy cells are
in their structure and function, cancer cells are dangerously different even when
compared to themselves.
Even though this level of complexity was daunting, medical researchers
continued to work toward some approach to make sense out of the chaos of the cancer
cell genome. Researchers have realized that even though cancer looks vastly
different at the genetic level, there is some predictability to the patterns of mutations.
These predictabilities in how cellular mutations are linked have been referred to as
mutation pathways. By examining a single genetic mutation as part of a pattern,
researchers have identified some dependant relationships between certain mutations.
So far, researchers have discovered between 11 and 15 dis-regulated genetic mutation
pathways in any given cancer sample. Through targeting these pathways through
25
novel therapeutics, the effectiveness of the interventions have been improved
(Mukherjee, 2010).
Making cancer control a reality. Medical researchers have harnessed this
growing understanding of cancer‘s cellular complexity and mutation pathways to
identify and develop targeted approaches to cancer treatment. These targeted
approaches have resulted in the creation of a whole new class of drugs, sometimes
referred to as smart drugs, targeted therapies, or cytostatic drugs. Whatever they are
referred to as, these therapies biologically control the progression of particular types
of cancer through a direct effect on the cellular environment of the cancer cell itself.
Two key components of this new cancer treatment paradigm are that control is
dependent on ongoing treatments, and that further mutations may occur within the
cancer cells themselves, and thus different targeted therapy will be required to
maintain control over time (Berlinger & Gusmano, 2011; Berlinger & Lederman
Flamm, 2009; Garfield, Messner, & Crowley, 2008; Mukherjee, 2010; Phillips &
Currow, 2010; Sparreboom & Verweij, 2009; Tiwari & Roy, 2011).
It is important to highlight that these new treatments are not curative, and do
not alter treatments aimed at cure, instead these new targeted drugs offer a multitude
of new opportunities to control disease progression if and/or when the disease spreads
(NCI, 2012). Whenever possible treatments that hold a promise of cure are offered,
but if cure is not achievable, this new class of drugs has shown success at achieving
some amount of control (Healy, 2007; Nathan, 2007; Sparreboom & Verweij, 2009;
Tiwari & Roy, 2011). As a result of these advances, success in the advanced cancer
setting is now being measured in terms of time to disease progression or improved
26
survival time (Dorff, Goldkorn & Quinn, 2009; Gundgaard, Soerensen, & Ehrnrooth,
2008; Healy, 2007; Mukherjee, 2010; Sun, Schiller, Spinola, & Minna, 2007). Just as
Schipper et al. (1993a, b, 1995) proposed the end goal of cancer treatment in the
advanced stage has been redefined, and now revolves around patients living longer
with their cancer. A chronic trajectory in the advanced cancer setting is achievable
and has now been classified as a successful outcome (Haylock, 2010).
With Chronic Cancer New Challenges Emerge
It is undeniable that achieving the ability to control cancer‘s progression
represents amazing success. Given the massive cellular complexity and undeniable
chaos that exists within each cancerous tumor, it is amazing that researchers have
found any structure to guide a targeted treatment. However, it is important to
highlight that these treatments are not ―magic bullets‖ (Sparreboom & Vervwij, 2009,
p. 115). Clearly these new treatments hold great promise for the treatment of solid
and hematological tumors, but even with the successes attained, there are significant
limitations and challenges.
Continued unpredictability. Cancer treatments have always been
unpredictable in terms of how an individual will tolerate a treatment, or how effective
that therapy will be for them. In the situation of chronic cancer that is no different.
The life extension that can be achieved with is unpredictable and varies widely from
years to weeks. The effectiveness of treatments are highly dependent on the cellular
particulars of each individual cancer, and the individual‘s response to them. For
example in the treatment of advanced colorectal cancer, integration of Bevacizumab,
a new therapy that targets mutations in the VEGF pathway, or cetuximab, a therapy
27
that targets the EGRF pathway, have shown promising benefits. Their addition to the
standard treatment protocol for advance colorectal cancer has increased the overall
survival of this population by 1.8 months (Gundgaard et al., 2008). In the situation of
advanced lung cancer, the targeted therapy known as Erlotinib added an estimated
two months to overall survival time when combined with other cytotoxic drugs (Sun
et al., 2007). In advanced renal cell carcinoma, six different targeted therapies have
shown to contribute to a doubling of progression free survival from standard therapies.
Further, the likelihood that these targeted therapies would have any benefit depends
on the particular genetic mutations that exist within the carcinoma. For example, if
the cancer cell possesses mutations on what is known as the VEGFR signaling
pathway, there was a 3.5 month overall survival benefit to having treatment with a
targeted therapy known as Sunitinib, but if they did not have that type of mutations,
there was no benefit at all (Dorff et al., 2009).
On the other end of the spectrum, the addition of targeted therapies has
demonstrated significant improvements in overall survival in chronic leukemia,
lymphoma, myeloma, and breast cancers (Mukherjee, 2010). The most impressive
survival benefit has been in the area of treatment for Chronic Myelogenous Leukemia,
better known as CML. Prior to the advent of targeted therapy, CML was thought to
be chemotherapy resistant (Mukherjee, 2010). Most patients lived about 3-5 years
once diagnosed with this disease regardless of what types of interventions were
offered, with an arch of increasing symptoms, disease progression, and progressive
impact on daily life ending in death. Gleevec, a targeted therapy that acts on the
BCR-ABL tyrosine kinase pathway, which is mutated in CML was introduced to
28
clinical testing in the early 2000s. By 2001, the benefits of being treated with
Gleevec were so obvious to researchers; an ethical decision was made to switch all
patients from the control/usual care arm over to the treatment arm. Follow up
longitudinal research, published by Druker et al. (2006), showed that 87 % of patients
treated with Gleevec were still having a complete cytogenetic response to the drug 5
years post initiation of treatment. The development of Gleevec has rendered CML an
indolent leukemia with an excellent prognosis if the patient remains on continued
treatment with Gleevec and disease mutation does not occur (Mukherjee, 2010).
Complexity. Although this brief review of survival benefits related to
targeted therapies is not comprehensive, it highlights the breadth of impact, and the
complexity of the research that is driving these new treatment options. It is likely that
current trends of discovery will continue, and more and more of these targeted
therapies will enter the world of clinical trials. If proven to increase time to disease
progression or survival time, these targeted therapies will most likely be added to the
growing list of funded cancer therapies that can be selected from to control cancer.
This is fundamentally increasing the complexity of decision making around treatment
options. In the past patients and families may have had one or two treatment
protocols to decide on; now there can be seven, eight, or even nine different treatment
protocols that could offer some benefit.
However, it is important to highlight that these targeted therapies are only
beneficial if they are targeted at a mutation in a particular cancer, and just because a
cancer has a certain mutation, it does not mean these treatments will work. To add to
the complexity there is also no way to know if they will continue to work into the
29
future. This has sparked a new approach to managing this level of complexity in
treatment decision making that is being referred to as Personalized Medicine
(Canestaro, Martell, Wassman, & Schatzberg, 2010; Collins, 2010; Corless, 2011;
Jain, 2009; Salari, Watkins, & Ashley, 2012; Simmons, Dinan, Robinson, &
Snyderman, 2012; Steffen & Steffen, 2013). Personalized medicine is being framed
as a structural model for efficient healthcare. It tackles the unpredictability and
complexity of treating individual cancers by highlighting how knowing the details of
both the individual‘s genetic makeup and the makeup of their individual cancer can
be harnessed to make evidence-based treatment decisions. Personalized medicine
requires the use of genetic sequencing procedures to link clinical and molecular
information to individual patients. The assertion is that this type of unique individual
information can be used to inform optimal treatment decisions (Corless, 2011; Steffen
& Steffen, 2013). This is opening up new questions. Can quality cancer care be
delivered solely on the premise of someone‘s genomic make up? Will telling patients
about their genome and the correlating drug options ease decision making stress? Will
this type of decision making improve treatment effectiveness?
Cost. Another area where chronic cancer is driving new challenges is
financial implications of ongoing treatments. It is well understood that cancer is a
disease of the aging cell, in that as an individual ages, their risk for cellular mutations
increases (Mukherjee, 2010). As Canada‘s population ages, predictions as to the
increasing rate of cancer incidence are staggering. It is estimated that in Alberta, in
the next 20 years incident rates for cancer will increase by 60 % from approximately
15,000 new cases in 2010, to 24,100 by 2030 (AHS, 2011). Specifically, in relation
30
to this topic, the predictions of cancer prevalence are even more problematic.
Prevalence is the measure used to study the burden of disease in a population (Ellison
& Wilkins, 2012). In 2012, Ellison and Wilkins published the first Canadian cancer
prevalence trend estimates, which showed a statistically significant increase in
prevalence has occurred across almost all types of cancer. These authors linked this
increase in prevalence to both an increase in incidence and improvements in survival
related to improved screening, early identification, and treatment options. As the
trend towards treating cancer as a chronic disease with ongoing treatments continues
to play out, the prevalence of cancer will continue to increase (Tiwari & Roy 2011).
As more cancer occurs, and more people with cancer live longer as a result of
ongoing treatments, the cost for cancer treatments in Canada is climbing at a record
pace. In the context of Canada‘s publicly funded health care system, this is reason for
alarm. The cost of developing a single targeted therapy from concept to market is
estimated to be 50 to130 million U.S. dollars. Once a drug is finished all clinical
testing, and is ready for retail, only one in ten drugs receives approval. This means
that pharmaceutical companies might have invested between 500 million to 1.3
billion dollars to get one successful drug to market (O‘Reilly & Venkatesh, 2010).
This reality results in extraordinarily high prices for targeted therapies, as
pharmaceutical companies must recover their costs, reinvest in ongoing research, and
reward their investors (Sleijfer & Verweij, 2009).
O‘Reilly and Vankatesh (2010) offered a useful example of how this has
impacted oncology drug costs in the province of British Columbia (BC). BC has a
population base of 4.5 million. In 1998/99 the provincial oncology drug budget was
31
approximately 20 million dollars. By 2008-09, the oncology drug budget had grown
annually by 20 % to 130 million dollars. In that year, there were 30,000 unique
patients in BC who were on cancer therapies. Based on this trend, and the increase of
patients on continuing treatments, it is estimated that in 10 years (2018-19) there will
be 46,500 unique patients on treatment. If the cost of cancer drugs continues to
escalate at 20 % per year, and the trends towards more patients staying on treatments
longer plays out, the cost of paying for cancer drugs will quickly become
unsustainable. Interestingly, the top ten oncology drugs used in BC in 2008,
accounted for 75 % of the overall budget, and seven of those ten drugs were targeted
therapies for control (O‘Reilly & Vankatesh, 2010).
Another question that comes to the surface when faced with justifying this
massive expenditure of public dollars is the issue of defining effectiveness of the
treatments. Messersmith and Ahnen (2008) asserted that in countries or jurisdictions
that include an analysis of cost-effectiveness related to impact on improvements in
survival, many new oncology therapeutics are not getting approved. This is related to
the fact that targeted therapies may only have a marginal impact on improving overall
survival time. One strategy proposed in the literature is to utilize predictive markers
identified through genetic testing of tumor samples to predict the likelihood of
response (Corless, 2011; O‘Rielly & Vankatesh, 2010; Steffen & Steffen, 2013).
Winning the War by Redefining Success
There is no doubt that over the past two decades, science has provided us with
a much deeper and wider understanding of cancer the disease. The human genome
has been mapped, pathways at the cellular level have been charted, precise mutations
32
particular to specific cancers have been discovered, and innovative new treatments
targeting these biological nuances have been developed which have resulted in the
possibility of a new chronic phase in the cancer trajectory (Ma & Adjei, 2010). Not
all cancers can be controlled, but when they can be controlled through ongoing
therapeutic interventions, cancer still differs dramatically from other chronic diseases
in several ways. Cancer cells are inherently unstable. They are always mutating,
resulting in hundreds of unique mutations in each tumor. Cancer cells also have
several other dangerous abilities including, the ability to resist the signal to self
destruct, the ability to move microscopically beyond the original site, the ability to
signal the body to produce new blood vessels to feed its growth, and the capacity to
develop a resistance to treatments (Mukherjee, 2010).
All these unpredictable realities create a heavy psychological burden to
chronic cancer, where patients‘ anxieties begin to rise in rhythm with the approached
date of the next scan, appointment, or blood test. Will this be the test that shows that
the cancer has mutated? Have the current therapies ability to control the cancer
begun to fail? If it is still working, how long will it continue to work? All these
questions remain unanswerable. Chronic cancer also carries a host of physical
symptoms that arise from either the presence of the cancer itself or from the side
effects from the treatments that are required to live longer. Dealing with
unpredictability, change, and side effects is a norm of life with chronic cancer.
If as Mukherjee (2010) proposed, ―this war on cancer may best be won by
redefining victory‖ (p. 465), then how will that victory be defined? Will improving
time to disease progression, or improving overall survival time be the definition of
33
success (Kantarjian, Wolff, & Koller, 2006)? Will success be defined as a matrix
relationship that accounts for both how effective treatments are at extending life as
well as maintaining and improving quality of life (Witter & LeBas, 2008)? If quality
of life is part of the definition of a successful, then understanding and managing how
symptoms and the disease itself impacts the individual and their family, must be part
of successfully controlling the disease (Berlinger & Lederman Flamm, 2009; Bub,
2006). This requires understanding how the disease and its treatments affect people‘s
lives.
Understanding the Experiences of Having Cancer
Shifting from objective to experiential. Cancer survival rates in Canada are
rising thanks to the amazing progress in the world of cellular research and
pharmaceutical developments. These advancements have translated into a change in
survival rates in the past decade from 56 % to 62 % (Ellison & Wilkins, 2010).
However, what does survival mean? Does it mean being cured, or does it mean
simply still being alive? In the case of cancer survival rates, it is a measurement of
how many people are still alive five years post diagnoses, regardless of their status as
cured, in remission, having ongoing treatments for control, or in palliation.
The scientific advancements that have extended survival are to be applauded,
but must be accompanied by an awareness that viewing such accomplishments from
an exclusively medical or statistical perspective detracts from the broader issues of
the complexities that arise for the individual and their families as they live longer
with ongoing cancer treatments for disease control. The urge to stay at the level of
statistical success is seductive. It exposes none of the messiness of the everyday
34
experience that living with incurable but treatable cancer entails. These statistics and
the quantitative data hold us at a distance from the people and their families whose
lives have been forever changed by cancer, who struggle daily to make the best of a
situation that they did not choose. In many ways, cancer and its ongoing treatments
are becoming a way of life for many Canadians, rather than just a threat to it (Witter
& LeBas, 2008). As medical knowledge and technology deliver improved survival,
the obligation to ensure that this hard earned life-extension is of good quality must
also be responded to.
As the literature about cancer as an experience is extensive and nuanced, I
have chosen to organize this section of the literature review in relation to the
unfolding experiential arch of the cancer journey, specifically around common
experiences that those living with chronic cancer will experience. As this research
aims to explore and understand the experience of families, I will highlight research in
these areas that expounds on the family experience, but I will also integrate literature
about the individual with cancer as it is impossible to look at one without the other.
Locating Cancer within the Family
As living with cancer takes on a chronic dimension, the impact on families
must be considered. Family is a difficult concept to define as it can be understood in
many ways. I have adopted the Canadian Hospice Palliative Care Association‘s
[CHPCA] (2013) broad, inclusive definition of family as those closest to the patient
in knowledge, care, and affection, including biological family, family of choice,
and/or family of acquisition. It is well documented in the literature that families play
a central role in supporting the well-being of individuals within the family who have
35
cancer (American Cancer Society [ACS], 2010; Canadian Cancer Society [CCS],
2008; Duhamel & Dupuis, 2004; Ferrell & Coyle, 2008; Fitch, 2009; Glajchen, 2004;
Gorman, 2006; Institute of Medicine [IOM], 2007; Kuhl, 2002; Plant, 2008). Beyond
the families‘ supportive roles, cancer can also affect the physical and emotional
wellbeing of family members (Gorman, 2006; Hartrick Doane & Varcoe, 2005;
Hudson, Aranda, & Kristjanson, 2004; IOM, 2007; Pasacreta, Barg, Nuamah, &
McCorkle, 2000; Wright & Leahey, 2009; Wright, Watson, & Bell, 1996). When
cancer enters a family it disrupts the network of relations that make up a family,
forever changing relationships between family members (Plant, 2008).
Boyle (2002) identified families facing cancer as the forgotten priority.
Cancer statistics represent individuals with the disease; they do not represent all those
that are impacted by the illness of cancer. Although family members do not actually
have to undergo surgery, chemotherapy, or radiation, through their family connection
they are ―mandated to respond to, struggle with, and integrate into their lives the
turmoil that cancer creates‖ (Boyle, 2002, p. 69). Families suffer parallel
consequences without the physical presence of the disease. The impact cancer has on
the family frequently continues far beyond the scope of the disease and its treatment
(Plant, 2008). In attempting to grasp the enormity of this societal issue, some simple
calculations are helpful. In 2009, over 171,000 Canadians were diagnosed with
cancer (CCS, 2009). Calculations with a conservative average family size of 3 people
(Statistics Canada, 2006) shows us that in 2009 alone over 500,000 Canadians
experienced a new diagnosis of cancer within their families. This estimate does not
include members of the family beyond the nuclear family, families who are already
36
living with cancer, or have lost a family member to cancer or those who have lived
through cancer and have been cured.
Receiving the diagnosis. To be a cancer patient one must have received a
diagnosis of cancer. To be a family living with cancer someone that you define as
family must have heard the phase ―you have cancer.‖ The moment a cancer diagnosis
is received, life in that family is forever re-contextualized as life before cancer and
life after cancer arrived (Healy, 2007). Hearing the words ―it is cancer‖ transports
the family from a pre-illness world that is familiar, predictable, and comfortable to a
world that is uncertain, unpredictable, and frightening (Holland & Lewis, 2000; Plant,
2008; Wells, 2008). Cohen (1993) referred to this moment when everything changes
for an individual and family as the moment of rupture. The diagnosis of cancer defies
any logic, fairness, or justice. It makes no sense. The taken for granted world of the
family abruptly vanishes. All plans become vulnerable. The future becomes
uncertain, and any thoughts of the future ignite fears of death and loss (Cohen, 1993).
Edwards and Clark (2003) examined the psychological impacts of a cancer
diagnosis on families. They studied 48 families who had received a cancer diagnosis.
Their sample consisted of the 48 cancer patients and 99 adult relatives. The authors
drew on the family systems model that asserts that individuals are best understood
within their relational contexts (Wright et al., 1996), and therefore explored their data
at both the individual level and at the family level. The authors concluded that the
diagnosis of cancer affected the whole family, and that the family‘s unique style of
functioning had significant associations with the family members experience of
depression and anxiety. The areas of expressiveness and problem solving were the
37
most important variables in explaining the prevalence of depression. Whereas
communication was the only family functioning variable that had a significant
association with anxiety (Edwards & Clark, 2003). The authors found that family
members had higher anxiety and depression than the patients and concluded that
oncology health care professionals must consider the whole family when providing
care, as the psychological impact of cancer on patients and relatives is considerable.
Holland and Lewis (2000) proposed that the moment of diagnosis triggers the
highest levels of anxiety for patients and families because the bad news has been
given, but there is no plan in place to move ahead and fight it. Another source of
anxiety that accompanies a cancer diagnosis is the fear that it will bring death to the
family. Although the vast majority of cancers are treatable, and some are potentially
curable, many cancers are not, and do result in early death (Rayson & McIntyre,
2007). This has resulted in a predominant fear in our society that a diagnosis of
cancer will lead to pain, suffering and death (Pitceathly & Maguire, 2003). Similarly,
Gotay (1984) identified that partners may in fact express more fear of death than the
person with cancer themselves, as their fear is doubled. They fear the death of their
loved one and the radical changes that will occur in their world if/when their loved
one dies.
Research has shown that most patients and family members remember very
clearly how their diagnosis of cancer was communicated to them (Plant, 2008).
Frank, who is a cancer survivor himself, has written several books about his
experience (1991; 1995; 2004). He vividly recalled his memories of being told he
had cancer. ―The future disappeared…I felt I was walking through a nightmare that
38
was unreal but utterly real. This could not be happening to me, but it was, and it
would continue to happen‖ (Frank, 1991, p. 27).
As clearly as patients and families remember how their diagnosis was
delivered, they often cannot remember details of what was said beyond hearing that
they had cancer. Gabrijel et al. (2008) designed and conducted a study to test
patient‘s recall of information after receiving a diagnosis of lung cancer. Seventy-one
patients and twenty one physicians participated in the study. Physicians were asked
to record the information that patients were given in the conversation when their
diagnosis was revealed. Patients were surveyed three days after their diagnosis to ask
what they recalled of the conversation. Analysis consisted of correlating the patient
recall with the physician record of content delivered. Over half of the patients
reported that they did not recall being told if their treatment was curative or if
treatment was to slow progression, even though physicians reported that all patients
were told this in their consultation. More specifically, even in the patient group
where treatments were aimed at cure, 42 % could not recall that this conversation had
taken place. The authors concluded that more research was needed to understand
what caused this discontinuity of knowledge retention.
Cohen (1993) described how the confirmation of the diagnosis is experienced
differently by the healthcare team and the family. For a physician, the confirmation
of a diagnosis brings closure to a series of questions and hypothesis that the physician
must make as to what is wrong with the patient. Once a diagnosis is confirmed the
path forward is relatively clear to the physician. Each disease has a standard set of
therapies and protocols that have been shown to have some efficacy at cure or control.
39
For the patient and the family though, diagnostic certainty only answers what is
wrong. It does not offer a clear sense of how they should proceed. The families‘
uncertainty quickly transforms from a one-dimensional concept revolving around if
they have cancer, to a multidimensional uncertainty that spreads to every aspect of
family life.
A cancer diagnosis brings many new experiences into the world of the family.
They will have to grapple with understanding complex medical information in order
to make difficult, life altering treatment decisions. Also, the way the cancer presented
itself affects how individuals and families can absorb the fact that cancer has been
diagnosed. In some situations, due to progressive symptoms such as pain, weight loss,
or fatigue, individuals and families may suspect that something is wrong. In this
situation, some of the work of preparing for a diagnosis is done before the disease is
confirmed (Plant, 2008). However in other situations, the family is blindsided by the
diagnosis. It appears out of the blue (Healy, 2007). Alifrangis et al. (2011)
concluded from their research that communication between physicians and families
following a diagnosis of cancer requires particular sensitivities to the unique situation,
and therefore cannot be formulaic.
Having cancer treatment. Once cancer is identified, there are always
questions about treatment. Can it be treated? How would it best be treated? What
treatment would provide the most positive outcomes? What side effects will be
caused by the treatment? In these contexts, the word treatment refers to a variety of
therapies that aim at eradicating or controlling the cancer. Appropriate cancer
treatments can not be identified for a cancer patient until they have had a series of
40
staging investigations to identify exactly what type of cancer the individual has and
the extent to which it exists in their body currently. Colbourne (2008) defined this
period of waiting for a treatment plan to be clarified as a time of emotional
discontinuity, where individuals and families oscillate between fear, uncertainty, hope,
and positive thinking. The individual and family must also process the shock that
cancer is really present, and that an apparently normal, and reliable body has
malfunctioned in some way (Mukherjee, 2010). Knowing cancer exists but not yet
actively intervening makes this period of staging very difficult for individuals and
families (Leydon, Bynoe-Sutherland, & Coleman, 2003). Izod (1996) shared that as a
cancer patient during the period of time while staging examinations were conducted
he felt completely powerless because he could not move forward and deal with the
cancer, and yet he could not get the reality of cancer from his mind.
The experience of powerlessness is not exclusive to cancer. Aujoulat,
Luminet, and Deccache (2007) studied powerlessness in patients with an assortment
of chronic diseases. Utilizing a grounded theory methodology, these authors
interviewed 40 patients who were living with chronic disease. These authors
highlighted several drivers of powerlessness. They found that a key trigger to
powerlessness is that treatments to manage their disease have not yet been initiated or
identified. Powerlessness may also be driven by a loss of control over their bodies,
their emotions, their environment, and how they experience time. Chronic disease
also contributes to a loss of one‘s personal and social identities. Aujoulat et al.
concluded that human beings require a sense of security to make sense of their world.
Physically being able to control one‘s body and its capabilities offers a sense of
41
empowerment and security. It allows people to predict the future and make plans.
The arrival of an unexpected chronic disease illuminates the reality that one is never
in complete control of what is going on within their body, resulting in the unsettling
recognition of the limits of their control.
Treatments represent a tangible way to regain control over what is happening
in the body. Once the uncertain period of cancer staging and diagnostics is complete,
a treatment plan can be created. This can offer some relief from anxiety and
powerlessness, because at least there is a plan and action can be taken (Colbourne,
2008), but no matter what evidence the treatment plan is based on, there is no
guarantee that it will work. Conventional cancer treatments can include surgical
interventions, systemic treatments such as oral or intravenous chemotherapy, and/or
site specific interventions such as radiation therapy. These treatments can be used as
single interventions, but more and more often, they are used as combined, synergistic
interventions. The fact that one or more treatments will be offered to treat the cancer
instills hope because the treatment might be able to eradicate cancer, or control its
progression. However, the lack of certainty around the outcomes of treatment, or
how each individual will respond to the treatment continually challenges the
maintenance of hope (Rosenblum et al., 2009).
This complexity and irresolvable uncertainty makes the experience of coping
with cancer treatments even more daunting for individuals and families (Ptacek,
Ptacek, & Dodge, 1994). Each treatment brings its own set of physical impacts and
side effects and its own set of risks and uncertainties. Surgical interventions include
the risk of general anesthetic, post operative risk of infection, and the often painful
42
journey of physical recovery. Radiation therapy and systemic treatments bring
specific physical side effects that can be very difficult to manage, as well as
complicated risks of negative adverse events. Importantly, beyond these physical
impacts and risks, cancer treatments also bring psychological side effects which can
be equally as impactful on the cancer treatment experience (Holland & Lewis, 2000).
Another complicating fact about cancer treatment is that the plan often
involves multiple interventions and treatments that span an extended period of time.
Even with curative treatment the time span can vary, from aggressive treatment
spanning months as in the case of leukemia and bone marrow transplants (McQuellon
et al., 1998) to five to ten years of ongoing adjuvant anti-hormonal therapy in the
situation of early stage, hormone receptor positive breast cancer (Greil, 2009).
Further complicating this, is each subsequent treatment is influenced by the success
or failure of the previous intervention, so even though the pathway appears certain,
the next step is always contingent (Rosenblum et al., 2009). If the treatment does
show benefits, the health care professional still cannot provide certainty as to how
long the treatment will work, nor can they tell the patient or family which treatment
will be used next as it depends on how the disease mutates. As a result, how long
someone will need to be on a treatment is not definable. It is always estimated with
tentative end dates even in the curative situation, and no end date at all in the setting
of treatments that aim for control (Mullins, Montgomery, & Tunis, 2010).
Treatment decisions always include a delicate balancing of potential benefits
and possible negative impacts (Greil, 2009). Unfortunately even after the treatment
decision is made and concrete action has been initiated, the uncertainty is not erased.
43
Symptoms of both the disease and treatments change over time, and therefore change
for these families is a constant (Berlinger & Lederman Flamm, 2009). Cancer‘s
innate ability to adapt itself to become resistant to treatment is, as yet, an irresolvable
problem. The psychological burden of living with this knowledge that at any time the
treatment could stop working, symptoms could worse, and disease progression could
occur is compounded by the fear that each treatment cycle, scan, or blood test could
indicate that the treatment is no longer working.
Another significant complexity of trying to cope with cancer and its
treatments is that there is no certainty around which side effects will be experienced,
or how severe those effects will be. Cancer itself can cause many difficult and
distressing problems, but so can its treatment (Corner, 2008). In some situations,
when cancer treatment plans are being decided on, the cancer itself may not have
caused any notable impact on the individual but the treatments proposed have
complex and unpleasant side effect profiles such as nausea, fatigue, hair loss, or
diarrhea (Fitch, 2009). Although these physical side effects are most well known,
cancer also affects the emotional, practical, spiritual, and social domains of life. It
also causes an increased need for relevant information (Ferrel & Coyle, 2008).
Dealing with the numerous and diverse impacts of cancer and its treatment is a
complex challenge. Compounding this is the fact that how each individual with
cancer experiences these symptoms and challenges changes over time as the course of
the disease and as treatments unfolds (Fitch, 2009).
The side effects caused by cancer and its treatments are not limited to the
individual, and can radiate out beyond the individual. Hodges, Humphris, and
44
Macfarlane (2005) reported that family members of patients with cancer experience
higher than normal stress levels for multiple reasons including fear of losing their
loved one, concern about their loved one suffering, and the additional demands of
providing emotional and physical support to the ill person. When the person with
cancer is unable to carry out their usual family roles, family members must adapt and
do more. As the length of time that this disruption to roles extends, the caregivers
themselves have an increased likelihood of depression, and other adverse health
effects (Given, Given, Kurtz, & Kurtz, 2004). If caregivers are experiencing high
levels of stress, they may not be able to provide the type of physical or emotional
support that the patient needs (Schultz & Beach, 1999). If the family had problematic
relationships prior to the cancer, and the stress level of family members gets too high,
there may not be enough support within the family for day to day functioning (Syse &
Kravdal, 2007).
Planning for life in the midst of this much uncertainty can leave individuals
and family members frustrated with their situation. Sand, Strang, and Milberg (2008)
identified that when patients and families had to live with prolonged uncertainty,
planning for everyday life and future family activities was difficult. Individuals in
their study described living with the constant feeling that anything could happen at
any time as being difficult, because it was so different than the normal taken-forgrantedness where everyday life is perceived as predictable and stable. The authors
identified that the suddenness, intensity, and lengthiness of the disease trajectory are
cumulative circumstances that make living everyday life incrementally more difficult
for the individual and family.
45
When treatments are for disease control. Although it is never possible to
know for sure that a treatment will deliver a cure, when a disease progresses past a
curable state, which is usually defined as a spread beyond the original localized site,
the focus of treatments shift to disease control. Sometimes this shift from cure to
control is subtle. Treatment routines do not change; instead a new control focused
drug is substituted in. In some situations, the patient may have had curative treatment
and after a period of no treatment, the disease reoccurs and treatment is restarted. In
other situations from the very beginning of treatment, it is understood that no curative
interventions apply, and treatment starts as control focused. Regardless of how one
arrives at treatments aimed at control, once the intent been defined as control, a
significant shift in how success is gauged occurs. In curative treatments, the
successful endpoint is the eradication of all cancer cells from the body. In the control
setting, success is measured in the survival time with the disease still present
(Berlinger & Gusmano, 2010; Berlinger & Lederman Flamm, 2009).
Although few research articles exist specifically about families everyday
experience of living with cancer as incurable but treatable, there are various research
articles that indicate the importance of exploring this topic further. Thomas, Morris,
and Harman (2002) wrote about the ―enduring cultural image of cancer as an acute
and deadly disease that acts swiftly to end life‖ (p. 530). They argued that this
cultural belief predisposes families to view their supportive care role as one that will
probably be of short duration. However, as cancer treatments are designed that are
able to effectively control progression, the journey is becoming longer. This is
46
leaving families unprepared emotionally for this new and sometimes lengthy chronic
dimension of the cancer journey.
Sherman and Simonton (2001) identified that ―if medical treatment is
prolonged, family members may also wrestle with covert anger towards the patient‖
(p. 194). Cherlin, Fried, Prigersonl, Schulman-Green, Johnson-Hurzeler, and Bradley
(2005) reported that communication between physician and family regarding the
incurable nature of the cancer often happens very late in the disease trajectory, and
proposed that ―reducing the delay in communication regarding the patient‘s illness
may provide more opportunities for patients and families to say goodbye, complete
personal and financial arrangements, and plan for the last phase of the patients life‖ (p.
1183). Kristjanson and Ashcroft (1994) identified that when there was incongruence
between the family‘s expectation of the disease trajectory and the actual disease
progression, family exhaustion, conflict and guilt occurred. Langegard and Ahlberg
(2009) described ―doubled suffering‖ (p. 100) in families faced with incurable cancer,
when family members feel the need to protect others from their own suffering and,
therefore, do not have an expressive outlet. Dumont, Dumont, and Mongeau (2008)
pointed out that difficulties in coping could have consequences on the longer-term
psychological and physical health of the family members. Higginson and Costantini
(2008) reinforced that ―the transition from radical, intensive treatment to a phase of
less active life-prolonging treatment and palliative care remains poorly understood‖
(p. 1415).
47
Incurable but Treatable Cancer
Living with advanced cancer. My previous research study (Watson, 2008)
focused on exploring the individual experience of living with cancer that was
incurable but treatable. Gadamarian philosophical hermeneutics informed my
interpretive analysis. I interviewed six cancer patients who had a variety of different
types of cancer, and who were receiving treatments for control. A central message
conveyed by all participants was that no one understands what they are going
through, which contributed to an overwhelming sense of isolation. From this
experience of isolation, the image of being quarantined to an island with no hope of
returning to the mainland (life without cancer) was constructed. The metaphor of
having to live on Cancer Island held the participants‘ varied experiences.
All participants described living on this island as tolerable, because even
though the ongoing cancer treatment, its side effects, and the social isolation they
experienced made their life difficult, they all felt that the benefits of living longer due
to treatments outweighed the option of not continuing treatments. However,
participants spoke of the ongoing challenge of coping with continual and progressive
loss. As they lived longer, side effects accumulated, and the impact of the underlying
cancer grew. They lost the ability to do things they loved like golf, or gardening.
They spoke of how their relationships were transformed. They shared a sense that
friends and family struggled to know what to say and they themselves, in many ways,
worked to keep the full scope of their experience from their family, in an effort to
maintain a normal life. When living on Cancer Island change, loss, and adapting to
unfamiliar territory were constant, but the individuals in the study stayed focused on
48
their goal to live the best life that they could. Given these realities participants
continually worked to maintain their balancing act between dealing with the cancer
and its treatments, and trying to live well.
McCarthy and Dowling (2009) researched a similar topic but focused
specifically on the experience of patients with non-small cell lung cancer receiving
treatments for control. These authors constructed four themes to conceptualize the
experience: ―maintaining my life, the enemy within, staying on the train, and I am
still me‖ (p. 579). These authors also reported that participants felt the need to
protect their loved ones from the details of their diagnosis, and expressed concerns
about stressing other family members. Although this study only explored the
experience of the individual, it did reinforce the complexity experienced by the
individual when dealing with ongoing treatments for control in the context of the
family.
Rosenblum et al. (2009) explored the evolution of hope across the continuum
of a patient‘s trajectory of care while living with a brain tumor. This research
revolved around interviews with 14 patients or family members who were living with
a brain tumor and who had or were receiving treatment for its control. These
participants described four distinct periods of crisis: the crisis of shock and the
unknown when first diagnosed, the crisis of anticipation with every new brain scan
evaluation, the crisis of defeat and limitations upon the failure of the initial course of
treatment, and the crisis of terminal expectations and limited legacy that comes with
the anticipation of eventual failure of therapies, significant disease progression, and
death. Five areas that the participants consistently identified that would be helpful to
49
improve support for patients and families living with a treatable but incurable brain
tumor were: to be honest with them, to be compassionate and caring, to tailor
information and discussion to a patient‘s willingness to hear and ability to assimilate,
to take more time to explain and answer questions, to include family members in the
discussion and decisions, and to highlight those aspects of the situation that are
positive.
Grothe Thomsen, Rydahl Hansen, and Wagner (2011) conducted a grounded
theory study aim at increasing knowledge about the patient perspective of coping with
advanced cancer. The core element that emerged from their data was the experience
of ―struggling to be a participant in one‘s own life‖ (p. 261). The ability to participate
in their own life was impacted by their struggle to maintain influence over their
current situation. Four domains affected their ability to cope. The first was how
progressive their symptoms burdens were, and how dependant they were on external
help to manage. The second was their ability to maintain a normal life, which was
contextualized as everything that lay outside of coping with their disease. The third
was their ability to live with progressive powerlessness, and fourth was their ability to
find courage and strength to continue to try and live one‘s own life, even in the face
of mounting struggles.
Facing the end of treatment options. The biggest fears of individuals and
families who are living with incurable but treatable cancer revolve around being told
that their disease has progressed, that there are no other treatments available to try, or
becoming too sick to continue. Reaching the end of what is possible in terms of
treatments that offer control represents the most terrifying transition in the cancer
50
journey, from living with it, to dying of it. Murray, Kendall, Boyd, and Sheikh
(2005) identified that once the end treatment options for cancer control has been
reached, the end of life trajectory is a relatively short, predictable period of decline
including weight loss, reduction in performance status, and a decreasing capacity for
self care which progress till death. For individuals and families who have had long
periods of successful drug induced control, it can come as a shock to realize that
another type of treatment is not available, or recommended (Schulman-Green,
McCorkle, Curry, Cherlin, Hurzeler, & Bradley, 2004). Patients and families often
want to continue fighting the disease, and will often accept virtually any type of
treatment that may prolong life ((Buiting, Rurup, Wijsbek, van Zuylen, & Hartogh,
2011; Harrington & Smith, 2008). Matsuyama, Reddy, and Smith (2006) concluded
that when someone is facing death, they are more likely to accept aggressive
chemotherapy with the risk of major adverse effects and a small chance of benefit
than people who are only hypothetically making the decision. Silvestri, Pritchard,
and Welch (1998) conducted a descriptive study around the treatment decisions of
individuals with advanced non-small cell lung cancer, and found that some patients
would accept more chemotherapy for a survival benefit as short as one week.
Harrington and Smith (2008) explored the issue of the role of chemotherapy at
the end of life, and concluded that it is also often easier for oncologists to recommend
another option for treatment, even when the margin for benefit is very slight, that
open the discussion about transitions in care. Entering into discussions with families
about transitioning care to comfort care is thought to be more upsetting to patients,
take more time, and is not a familiar or comfortable conversation for most oncologists
51
(Berlinger & Lederman Flamm, 2009; Harrington & Smith, 2008). For many
oncologists, initiating a discussion about shifting treatment goals represents their own
personal and professional failure (Harrington & Smith, 2008). Oncologists also
worry that not offering another treatment will take away the patient‘s hope and
therefore cause more emotional anguish (Buiting et al., 2011). All too often the
overwhelming focus on treatments and the reluctance to address underlying issues of
incurability by both the oncologist and the patient and family complicates the
transitioning to the next phase of their journey (Swetz & Smith, 2010).
For the oncologist, knowing when not to offer another treatment is a grey area.
Decisions on what next steps to offer patients are always complex, as there is often a
chance that some small benefit could be gained by ongoing treatments which must be
balanced by the burdens/symptoms that come with the treatment (Buiting et al., 2011).
With the advent of more and more treatments that may contribute to control, there is a
growing trend toward using chemotherapy and other targeted therapies within weeks
of death (Buiting et al., 2011; Harrington & Smith, 2008). This trend toward opting
for more treatment, even in the face of significantly limited benefits is problematic in
publicly funded healthcare systems. The costs of therapies for control are
significantly increasing healthcare budgets and if they continue to increase as
predicted, will render our publicly funded system unsustainable (Garattini, van de
Vooren, & Zaniboni, 2013; Harrington & Smith, 2008; O‘Reilly & Venkatesh, 2010).
Is it reasonable to prescribe another expensive cancer control therapy when it has
minimal survival benefits but may help maintain the family‘s hope that more time can
be achieved (Garattin et al., 2013)?
52
Treatment guidelines which oncologists rely on to inform their practice often
represent the optimal use of therapies in terms of greatest efficiencies and least
toxicities, but do not consider the cost of the therapies (O‘Reilly & Venkatesh, 2010).
O‘Reilly and Venkatesh wrote that the physician role in advanced disease is to
discuss all therapeutic choices, but not to subject patients to false hope, or excess
toxicity because of reluctance to discuss the transition to palliative. Berlinger and
Lederman Flamm (2009) identified that although there are decision aides available
for oncologists to support decision making about curative treatments, no such
supports are available in relation to chronic cancer control treatment decisions. In
many ways, chronic cancer treatment decisions are being left up to the comfort level
of individual oncologists and the initiation/avoidance of the issue by individual
patients/families. This is becoming an issue of social justice that could affect the
sustainability of the healthcare system, and therefore treatment decisions must also be
looked at for their implications beyond the individual patient/family and oncologist
(Berlinger & Gusmano, 2010).
Once cancer treatments are stopped. The end of cancer treatments is a
difficult time for the family. Epner, Ravi, and Baile (2011) proposed that when the
end of treatment options are reached, patients and families often feel abandoned. The
hope for a longer life together is so central, that when families are faced with the
reality that there will be no further active treatments, it is often conceived as the
system giving up on them. Families develop deep trusting relationship with their
oncologist because the oncologist has guided them through months, and possibly
years of complex and successful decisions regarding treatment options. When
53
treatment ends, care is transitioned to palliative care, or back to their family doctor.
The oncologist, who has always be there to help them help manage the uncertainty of
what comes next, all of a sudden is no longer there to offer advice. This can trigger
feelings of abandonment in the patient and family (Cherney, 2010; Epner et al., 2011).
When individuals reached the end of medical options to control disease
progression, their disease becomes increasing unpredictability and symptoms escalate
( Rydahl-Hansen, 2005). Rydahl-Hansen conducted a study to describe the
experience of hospitalized patients who had incurable cancer, which was no longer
treatable. Twelve hospitalized advance cancer patients between 40 and 70 years old,
who were perceived to be two or more months away from death, were interviewed.
The data were analyzed with Giorgi‘s descriptive phenomenological methodology.
The characteristics of their experience that emerged from the data were ―increasing
powerlessness‖, ―existing in a persistent, and with time, unconquerable struggle to
maintain and regain control‖, and ―increasing loneliness and isolation‖ (p. 217). The
realization that they were losing the fight to maintain control of their life was heart
breaking for patients. Anticipating their own death brought worries about how their
family would cope without them in the future, and further isolation and loneliness for
the patient, as they were removed further and further from the everyday life of their
family by their progressive and terminal disease.
The moment cancer enters into the family‘s world they live in fear of finding
themselves at this crossroad. Hope is a constant companion through the months and
years of treatment. Hope that the treatment will work to slow it down. Hope for
more time together. Hope for a good quality of life. As the hope for another
54
treatment option fades, and the reality of what cancer does in its uncontrolled state
becomes obvious, the issues of preparing for death and coping with increasing
symptoms become forefront for patients and families. Much research exists about the
experience of individuals and families who are in the final phase of their cancer
journey, but as the focus of this literature review was about the experience of living
with chronic cancer, this area of literature was not included.
Where to From Here
Although there is some knowledge about the family experience of living with
chronic cancer, it is limited. This is why I have focused my doctoral research on this
topic so that a deeper understanding of this experience can emerge. Thousands of
families every year in Alberta struggle to adapt to life with incurable but treatable
cancer, and as demonstrated through the literature reviewed here, the experience is
filled with irresolvable uncertainties, progressive losses, and numerous physical,
emotional, and practical impacts that impact both the individual with cancer and their
family. Although this is an exciting time in cancer care, as never before have such
effective treatments for advanced cancer existed, the impact that ongoing treatments
for control have on the everyday lives of families can no longer be overlooked (Plant,
2008). McPherson, Rodney, McDonald, Storch, Pauly, and Burgess (2004) proposed
that ―one of the most important challenges in contemporary health care is to
understand and attend to our ethical obligations to families—as individual family
members, as family units, and as both connected to and distinct from patients‖ (p.
107). Often families are ill prepared to deal with the impact cancer has on their lives.
In the context of chronic cancer, the duration of the illness experience amplifies the
55
effects on the family (Dubenske et al., 2008). Research that elevates the awareness of
the impact that chronic cancer has on families will facilitate cancer care
professionals‘ ability to offer meaningful supports to the individual with chronic
cancer and their families.
In the next chapter, this study and its conduct is situated within the stance of
philosophical hermeneutics as described by H. G. Gadamer in his seminal work,
Truth and Method (1989). Although philosophical hermeneutics is not ―a
methodology of the human sciences‖ (Gadamer, 1989, p. xxii), it is an approach to
creating practical knowledge that arises from practice and relates back to practice
(Gadamer, 2007). Although Gadamer did not elaborate on a system of rules,
philosophical hermeneutics does have ―critical procedures‖ (Davey, 2006, p. 18) that
can guide its application to research which will be explored in the next chapter.
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Chapter Three: Hermeneutics as Philosophy and Research Method
Thus hermeneutics is more than just a method of the sciences or the distinctive
feature of a certain group of sciences. Above all it refers to a natural human
capacity for understanding. (Gadamer, 1977/2007, p. 248)
My purpose in this chapter is to explain why the topic of understanding the
experience of individuals and families who are living with cancer as a chronic disease
turns to interpretive inquiry and philosophical hermeneutics as a guiding approach,
and to illuminate the process I undertook to conduct this research. Gadamer (1989)
suggested the best way to proceed when trying to understand something is to let the
topic be the guide. As the experience of individuals and families who are living with
chronic cancer is complex and multifarious, trying to understand the topic holds its
own answers about how to proceed. The topic demands an approach that is attentive
to what is said, and what is unsaid and is capable of addressing experiences that
involve suffering, fear, illness and bravery.
Interpretive inquiry allows the researcher to enter into a conversation with
patients and families to understand the meanings attached to the particular problems
they are experiencing, the kinds of outcomes they desire, and the kinds of actions that
would be acceptable. Interpretive researchers are encouraged to pay attention to the
particulars and context, avoid generalizations, and to look deeply for meaning (Kvale
& Brinkmann, 2009). Interpretive inquiries do not aim to develop predictive and
prescriptive theory; instead they aim to reveal the nature of human experience (Van
der Zalm & Bergum, 2000). The power of this type of research revolves around the
researcher‘s ability to convey the meaning in an expressive and evocative way
through text, so that the reader can see, feel, or know something different about the
57
topic area, enriching their understanding of the experience or topic (Gadamer, 1989;
Jardine, 2006; Moules, 2002). This shift in how the topic is understood can inform
and alter actions and thoughts in the future.
Enabling this type of transformative experience in the reader is at the heart of
this research. Jardine (2006) offered that interpretive inquiry is educative at its core.
―It wants to listen, to affect and to invite, not merely inform‖ (p. 2). As technological
advancements continue, more and more cancer patients and their families will be
faced with integrating chronic cancer and treatments for control into their everyday
lives. As the goal of oncology nursing is to support the wellbeing of patients and
families living with cancer (Canadian Association of Nurses in Oncology [CANO],
2001; International Society of Nurses in Cancer Care [ISNCC], 2010; Oncology
Nursing Society [ONS], 2010), ensuring that nurses have some familiarity with the
experience of living with chronic cancer is essential.
I have chosen hermeneutic phenomenology informed by the philosophy of
Hans-Georg Gadamer (1900-2002) to guide this inquiry. Philosophical hermeneutics
(Gadamer, 1989) refers to an approach to understanding that moves beyond the
epistemologic preoccupation with method (Madison, 1988) and offers a way of
interpreting human meaning and understanding the world (Jardine, 2000, 2006;
Moules, 2002; Smith, 1991). Philosophical hermeneutics starts from the
philosophical question ―how is understanding possible‖ (Gadamer, 1989, p. xxvii). It
offers a humble starting point, where one acknowledges they are not the expert, that
there is more to be understood and commits the researcher to the task of opening a
relational space so that a different understanding of the topic can emerge (Bergum,
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2004). However, this does not mean that the approach to understanding is without
care or guidance. Philosophical hermeneutics outlines a general philosophy of
understanding steeped in a rich history of theory, philosophy, and practice (Moules,
2002). Philosophical hermeneutics does not offer a set of rules that can simplify this
process, but instead invites the researcher to participate in the process of
understanding and to risk being transformed so that ―we do not remain what we were‖
(Gadamer, 1989, p. 371).
The Historical Evolution of Philosophical Hermeneutics
Hermeneutics is defined as the science of interpretation (Oxford English
Dictionary, 2005). How philosophical hermeneutics is understood today is the result
of a long evolution of the philosophic thinking about interpretation, to which many
great thinkers have contributed. ―Sensitivity to history is part of hermeneutic
consciousness‖ (McCaffry, Raffin-Bouchal, & Moules, 2012, p. 215), therefore
understanding both the history of the approach and the history of the inquiry at hand
are important. Jardine (1992) argued that the historical tracing of method and topic
tethers the research to the world. Much as the last chapter traced the evolution of the
topic and how it is understood currently, the next section traces the evolution of
hermeneutics and some of the pivotal philosophers that influenced what has come to
be known as philosophical hermeneutics.
Linkage back to Ancient Greece. The etymological roots of the word
hermeneutics stretch back to the age of Greek mythology and can be glimpsed
through the common etymologic linkage between hermeneutics and Hermes, the
Greek god of communication and magic (Kearney, 2000). In Greek mythology,
59
Hermes had a very challenging dual responsibility: to translate the wishes of the gods
into language that mortals could understand and to transpose human requests into
language that the immortals could grasp (Davey, 2006). The particular content of the
messages that Hermes carried were not the ultimate concern, but rather how he
interpreted it so that the other could understand (Caputo, 1987). This is reflected in
the Greek verb hermeneuem which means to interpret. Hermeneutic interpretation is
primarily concerned with ―the truth of what is being said‖ (Gadamer, 1989, p. 296).
Hermeneutics draws its definition of truth from the Ancient Greek word for truth
which is aletheia (Jardine, 2006). ―Aletheia means to open up what was previously
shut, to show what was previously concealed, to uncover that which was covered
over, to make present that which was absent, to say that which was silent‖ (Jardine,
2006, p. 14). ―Hermeneutics begins with the premise that the world is interpretable‖
(Moules, 2002, p. 4).
The evolution of philosophical thinking about understanding. The
practice of hermeneutics dates back to the 17th century, when it was used to guide the
process of understanding difficult texts such as biblical scriptures and legal
documents. St. Augustine (354-430) developed some fundamental concepts of
hermeneutics such as that human self-understanding is impossible without an other
(Gadamer, 1972/2007) and that language is fundamentally forgetful of itself
(Grondin, 2003). The Reformation also left a mark on the evolution of hermeneutics
as the reformers believed the original meanings of the scriptures had been concealed
by the church‘s allegoric interpretations. Under the reformers, the aim of
60
hermeneutics became to ―bring a whole new understanding to an existing tradition by
uncovering its lost beginnings‖ (Grondin, 2003, p. 46).
Around the 1600s, philosophic thinking began to shift when Descartes (15961650), a French philosopher and mathematician, began to challenge the traditional
ways of understanding that were based on Aristotle‘s philosophy. Descartes believed
all knowledge was essentially linked together and could be known with the same
method, whereas Aristotle believed that different types of knowledge required unique
methods of acquisition (Ohlen, 2002). After a series of meditations, Descartes
concluded the only thing that could not be doubted was that he existed. This resulted
in his famous proclamation ―I think therefore I am‖ (Audi, 2006, p. 225).
Descartes built the Cartesian scientific method upon the certainty of the
individual thinking self. He valued mathematical data over data from the senses,
because data from our senses could be misunderstood because of the imperfection of
human thought. Thus, in order to avoid error in knowing, Descartes believed that
whenever possible the natural phenomenon should be reduced to quantitative
descriptions. This resulted in the push for scientific knowledge to be mathematized
(Audi, 2006). As conscious experience had no physical form, Descartes believed that
it must be treated differently. Therefore he created a dualistic system where the
thinking self was separate from the physical self. This was referred to as the mindbody split. From that point onwards, Descartes‘ fundamental privileging of
mathematized knowledge over knowledge generated by human senses became the
backdrop for how knowledge was conceptualized leaving human thought as an
imperfect and unreliable way of knowing (Audi, 2006).
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Schleiermacher (1768-1834) was the next philosopher to significantly shift the
evolution of hermeneutics (Grondin, 2003). Now in the shadow of Cartesian science,
Schleiermacher believed the modern conception of method must be brought to
hermeneutics in order to establish validity. Schleiermacher shifted the focus of
hermeneutics from reaching understanding to avoiding misunderstandings. He
conceptualized understanding as a circular process that involved a continual
movement between parts and whole. Schleiermacher believed that the act of
interpretation rendered many more things conscious to the interpreter than to the
original author, and asserted that hermeneutics was for ―understanding everything
that is cast in language‖ (Gadamer, 1989, p. 192).
The interest in, and evolution of, the philosophy of hermeneutics and
interpretation continued through the 19th and 20th centuries into our present day
world. Dilthey (1833-1911), a historian, viewed the lack of logical consistency in
historical thinking as a major limitation within hermeneutics, and set himself the task
of constructing a methodological model for understanding the human sciences in
order to legitimize them (Grondin, 2003). Husserl (1859-1938) recognized that the
quest for objective certainty had almost completely erased any recognition of the
living dimension of the world in which all actions and thoughts were rooted (Abram,
1996). In response to this recognition, he conceptualized the ―life world‖ (Grondin,
2003, p. 73) as ―the world of our immediately lived experience…[it] is the world that
we count on without necessarily paying much attention…[it] is always already there
when we begin to reflect or philosophize‖ (Abram, 1996, p. 40). Husserl then created
phenomenology, a scientific method where the essence of phenomenon could be
62
discovered through a process of bracketing their prior knowledge and describing
things as they exist in the world (Grondin, 2003).
Heidegger (1889-1976), who was Husserl‘s student, carried forward some of
Husserl‘s fundamental phenomenological concepts, such as life-world, fore-structures
of understanding, temporality, horizons, and the productive role of language (Caputo,
1987), but diverged with Husserl over method and interpretation. Heidegger radically
opposed Husserl‘s method, contextualizing method as a constructed approach to
avoid recognizing the finite nature of human being (Smith, 1991). Heidegger argued
that the starting point for understanding should be the ontological question ―what is
being?‖ (Inwood, 2000, p. 9).
Heidegger used the German word Dasein (being) as a way of referring to both
the human being and the type of Being that humans have. Heidegger proposed that
human beings understand themselves ―in terms of a possibility of self‖ (Heidegger,
1962/2008, p. 33) and that human Being always involved a thrownness, because it
can neither choose to be born, nor can it choose what situation to be born into, rather
human Being is always thrown into life. What Being must decide is not so much to
be, but more accurately how to be. Therefore a human Being‘s potential exists before
it is actualized (Inwood, 2000). Heidegger links this forward projection of thinking
and actualization into an ontological loop where understanding and Being are
indivisible (Caputo, 1987). ―We understand as we do because we exist as we do‖
(Caputo, 1987, p. 61). Thus, Heidegger separated the concept of understanding from
its methodological boundaries, establishing understanding as the original character of
human life itself (Gadamer, 1989). In this way, Heidegger elevated hermeneutics to a
63
new dimension. He showed that the structure of Being is thrownness and projection,
and ―that in realizing its own being, Dasein is understanding‖ (Gadamer, 1989, p.
254).
Gadamer (1900-2002), who was Heidegger‘s student, is considered one of the
most important and influential philosophers of the 20th century (Grondin, 2003).
Gadamer‘s philosophical hermeneutics could not have evolved without the
phenomenological opening that was created by Husserl or the ontological turn of
Heidegger‘s philosophy (Davey, 2006). However, Gadamer moved beyond both
Husserl and Heidegger by articulating an ontology of the in-between, and by
attempting to uncover what occurs within the transformative process of understanding
(Davey, 2006). Gadamer‘s major motivations were to overcome ―the age of
epistemology‖ (Madison, 1988, p. 108) and to outline a general philosophical theory
of understanding (Madison, 1988). Gadamer (1989) himself clarified that he did not
intend ―to elaborate a system of rules to describe, let alone, direct the methodical
procedure of the human sciences‖ (p. xxv), stating that his main concern was
―philosophic‖ (p. xxv).
Philosophical Underpinnings of Gadamarian Hermeneutics
One of Gadamer central arguments was that because of the modern
dominance and deferral to scientific methodological knowledge as the most reliable
way of knowing, how understanding actually occurs in the practice setting is
generally overlooked (Gadamer, 1996). It is important to note that Gadamer did not
argue that scientific, methodological knowledge was not valuable or that a
methodological approach to creating knowledge was somehow inherently wrong.
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Rather he argued that a balance between both ways of knowing is attainable and
required (Ross, 2004). Gadamer (1996) acknowledged that methodological science
has provided general laws, causal mechanisms, and biological knowledge, but the
people using that knowledge must still decide how to apply it. Gadamer (1989)
asserted that this requirement to apply general knowledge to the particular case is
universal. It cannot be erased. Gadamer proposed that in order to become the type of
person who can do a good job applying general knowledge to the particular situation;
one must develop the ability to make good decisions (1963/2007). In Truth and
Method (1989), Gadamer leads the reader on an extended reflection on how
understanding happens and how one can become someone who makes good decisions
in the moments when required.
Historically effected consciousness. The first task that Gadamer (1989)
undertook in Truth and Method was to rehabilitate the humanistic concepts of culture,
common sense, judgment, and taste. These concepts play a central role in
philosophical hermeneutics, because they represent types of knowledge that are not
the result of proof, demonstration, and mathematics but rather are supported by
tradition, received wisdom, and practical experience (Davey, 2006). In the shadow of
Cartesian science, these ways of knowing are seen as merely opinion, and specifically
within healthcare are ranked as not reliable for informing our actions (Morse, 2006).
Contrary to this Cartesian view, Gadamer (1989) positioned that people are shaped by
their historical traditions and culture and that these types of historically informed
knowledge underwrite all human knowing. Gadamer used the phrase ―historically
65
effected consciousness‖ (1989, p. 301) to describe that one‘s history is always a part
of how one sees the world. Humans are historical beings.
Culture, common sense, judgement, and taste are all ways of knowing that
require a certain level of self-awareness and introspection (Davey, 2006). Rather than
objective knowledge that is pre-packaged and can be understood independent of a
particular situation, this type of knowing demands the knower to engage who they
are, where they come from, and what they have already experienced, to make a
decision about what the situation requires. Gadamer (1989) offered the notion of
being situated within a historical horizon to capture the range of everything that one
knows including their historical ancestry. Gadamer offered that one can learn to
acquire a larger horizon by learning to look beyond what is close and familiar, to see
how it fits proportionately into the larger whole. In this way, the horizon of the
present is constantly being formed from the historical horizon of the past. Gadamer
stated that ―understanding is always the fusion of these horizons‖ (1989, p. 305).
Experience as formative. Bildung is the German word for ―formation,
cultivation, and education‖ (Davey, 2006, p. 37). This concept is central to how
Gadamer explained how one becomes the kind of person who can make good
judgments. Many types of knowledge are required to become cultured, but
knowledge itself is not enough. It is the process of being affected by the experiences
one undergoes that drives the process of becoming cultured (Davey, 2006). This
process cannot be achieved within academic settings, although it can start there.
Rather, becoming cultured involves the accumulation of meaningful, practical
experiences within a discipline, so that one can offer spontaneous and yet informed
66
responses to questions (Gadamer, 1996). Gadamer (1989) asserted that experiences
are the structures through which our horizons of understanding are formed.
Philosophical hermeneutics has a very deep connection with the concept of
experience, because what is learned through experience always extends beyond what
is learned from a formalized methodological approach (Davey, 2006). Gadamer
(1989) philosophized that experiences arise from events that no one has control over,
and as such can be defined as resulting from what happens to us ―over and above our
wanting and doing‖ (p. xxvi). Experience only becomes recognized as such when it
does not align with what was expected and always originates from what surpasses
what we thought we already knew (Gadamer, 1989). Therefore to become
experienced, one must be open to the fact that one‘s knowledge is incomplete. A
person does not need to know everything there is to know of a topic, rather because of
previous experiences and the knowledge drawn from them, an experienced individual
is open to having new experiences and learning from them (Gadamer, 1989).
According to Gadamer (1989), experience is not something that we have; it is
something we undergo. Jardine (2000) described experience as having the character
of a journey that transforms us. Through the experiences one endures in life, one
becomes who they are. It is through experience that we learn to ―acknowledge the
real‖ (Gadamer, 1989, p. 351). Gadamer (1989) wrote that experiences involving
suffering are particularly important because they offer insight into the limitations of
humanity. ―The idea that everything can be reversed, that there is always time for
everything and that everything somehow returns, proves to be an illusion‖ (p. 351).
To recognize that all human life is finite and that humans are the master of neither
67
time nor future is to acknowledge the limits of what is knowable and controllable
(Gadamer, 1989).
Fore-structures and prejudices. A lasting implication of Descartes
scientific method has been the concept that past understandings of a topic will bias
the researcher, and make any knowledge achieved unreliable. Gadamer (1989)
argued the opposite, asserting that fore-structures or what we understood before we
attempt to understand something new are essential precursors to any new
understanding. This is not to say that interpretation is arbitrary and based on one‘s
own preconceived notions. The first and constant task of understanding is to be
guided by the topic itself (Gadamer, 1989). A person who is trying to understand
must project the anticipated meaning on their existing knowledge of the topic area. It
is when the projected meaning does not align with existing knowledge that one is
alerted to the possibility of difference. Thus the process of trying to understand is
initiated.
When a judgement is made without consideration of all elements determining
the situation, it is referred to as prejudice (Gadamer, 1989). However, one can never
know all elements that determine a situation. At some point, a judgement or decision
must be made. Therefore considering many possibilities of what something could
mean is central. Gadamer instructed that to understand the meaning of another, one
does not need to forget or bracket all fore-meanings concerning the content or our
own prejudices, but rather we must be prepared to encounter difference. When
difference is encountered, a judgement must not be made in haste or solely based on
authority; rather understanding must proceed from the middle ground where tradition
68
and history can address us and inform us. ―Our historical consciousness is always
filled with a variety of voices in which the echo of the past is heard‖ (Gadamer, 1989,
p. 285). Hermeneutic research aims to raise inquiry to a higher stage of reflection
where the past and present are constantly mediated in the efforts to understand the
topic (Gadamer, 1989).
Language as multiplicity. How one comes to any understanding with the
other is through the common bond of language (Gadamer, 1989). Language has a
formative capacity as it is what enables ―the building of a cultural world over and
above the natural environment‖ (Davey, 2006, p. 46). Language in dialogue is also
transformative because language allows for the sudden emergence of new thoughts.
This occurs because the meanings of words are not constant; they have many
meanings (Gadamer, 1970/2007) and can always mean more than the speaker
intended them to mean. However the multiplicity in potential meanings is often not
recognized by either the speaker or the audience. Hermeneutics instructs us to be
with language, not as an object, but in a playful way that honours the multiple
meanings each word holds. There can be no final closed meaning to language
(Davey, 2006), only the possibility that further meaning can arise from the collision
of pre-understandings with what comes to meet us in language. It is in these
moments of intersection that the possibility of understanding differently emerges.
Gadamer‘s philosophic approach to understanding reminds us that we need to
engage in conversation truly hermeneutically, by being open ―to what has been said;
the language in which the text addresses us, the story that it tells us‖ (1989, p. 295).
Gadamer reawakens the concept of aletheia by highlighting that words can both offer
69
meaning and conceal meaning. Hermeneutic understanding works to uncover what is
hidden (Caputo, 1987; Gadamer, 1989). That linguistic meaning always includes a
multiplicity of possibilities calls to mind Hermes and the age-old challenge of trying
to understanding what another means. The goal of understanding is never to arrive at
the final meaning, but rather to keep the meaning of words at play and open so new
meanings can emerge. ―Language has its true beginning only in dialogue…placing a
subject matter before those communicating like a disputed object set between them.
Thus the world is the common ground‖ (Gadamer, 1989, p. 443). The world is where
people connect, and through sharing language come to a different understanding of
any subject at hand. The world is where people are always in the process of
becoming more than they were.
The ontology of the in-between. Gadamer proposed that understanding
always involves an encounter that provokes the individual to recognize the possibility
of difference (Davey, 2006). Sometimes the encounter with difference comes
through language shared with another person or through an new experience, but
sometimes this encounter can be within the self involving the recognition of an
―unquestioned past self-understanding‖ (Davey, 2006, p. 16). The moment the
possibility of difference is recognized is simultaneously the moment when the
possibility of a transformative experience opens up. Within the recognition of
difference, an opportunity to expand one‘s horizon exists. Davey asserted that a
hermeneutically conscious Being is always open, vulnerable and in question. The
space between what is familiar and strange is where understanding originates. As
Gadamer (1989) stated, ―the true locus of hermeneutics is this in-between‖ (p. 295).
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Exploring Method: Bringing Philosophical Hermeneutics to This Inquiry
The aim of research within the interpretive paradigm is to explore human
thoughts, feelings, and behaviors within a shared experience, rather than from outside
the situation (Bergum & Dossetor, 2005). It has long been held that the relationship
between nurse and patient is fundamental to quality nursing care (Benner, Tanner, &
Chesla, 2009). There is also a growing awareness that nurses require the ability to
apply ethical knowledge-in-action, as nurses operate in a contextually rich,
situationally diverse, constantly shifting moral landscape where they are repeatedly
required to make decisions about what is the right action (Varcoe et al., 2004). As
interpretive research is contextual, tentative, co-created, and located in daily life
(Hartrick Doane & Varcoe, 2005), it holds great potential for creating a textual
landscape which can offer a glimpse of what knowing-in-action looks and feels like.
Texts can create a familiarity similar to actual experiences if they capture the
imagination of the reader, and invite the reader to apply the text to their own
experience of nursing. Interpretive research is pedagogic at heart in that it teaches us
a different way of understanding (Jardine, 1992).
Although Gadamer (1989) did not outline a methodological step-by-step
process for understanding, his philosophy can, and has, served as a guide to exploring
topic areas that involve human relationships, suffering, and experiences. It offers an
approach that can guide interpretive inquiries that is both theoretical and practical, in
that it seeks to apply the universal principles of understanding and interpretation to a
particular topic. It offers the researcher an approach to becoming the kind of person
who can understand a topic, not as someone who stands apart from the topic and
71
observes it from an unaffected stance, but rather as one who thinks alongside the
other, as someone who shares a bond to a particular topic, and as someone who is
changed by the experience of trying to understand the topic differently.
The address of the topic. Interpretive research guided by philosophical
hermeneutics must start ―when something addresses us‖ (Gadamer, 1989, p. 298). To
be addressed is like being in a crowd and hearing your name called; it is personal and
compelling (Caputo, 1993). The call asks us to hold open a space where it can be
heard in all its otherness; it asks that we resist the role of expert (Tapp, 2000), and
embrace vulnerability, acknowledging that we do not know all there is to know
(Boston, Towers, & Barnard, 2001). It asks us to see the topic as worthwhile, as
something worth spending time with, as something we can learn from (Jardine, 2008).
Something in the address is familiar, yet strange. In the tension between familiarity
and difference, lies the topic. It is not the task of interpretive inquiry to define, once
and for all, what exists in this space, but rather to explore what understandings this
instance makes possible (Jardine, 1992). As I wrote about in the first chapter, the
topic of understanding cancer as an incurable but treatable disease has addressed me
in a variety of ways over the last decade, and it was through the multifariousness of
the address of this topic that I was compelled to create and conduct this research
study.
Ensuring Ethical Conduct
While creating the proposal, careful attention was paid to the guiding
principles of the Tri-Council policy statement (2010) specifically in regards to the
vulnerability of this population. The ethical dimensions of respect for human dignity,
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free and informed consent, vulnerable persons, privacy and confidentiality, justice
and inclusiveness, balancing harms and benefits, minimizing harm, and maximizing
benefits guided the development of this study. The proposal was reviewed by my
supervisory committee and approved by the Conjoint Health Research Ethics board.
All participants consented prior to the initiation of the interviews after reading a letter
of introduction (see Appendix A and B for adult and child letter) and by signing the
appropriate consent (see Appendix C and D for the adult and child consents
respectively). All participants agreed to have their interview audio recorded, and
were aware that they could withdraw from the study at any time.
Recruitment of Participants
Moules (2002) wrote ―[h]ermeneutics chooses the best players, on purpose‖
(p. 14), not to capture a description of their experience but to further nurture how the
researcher can understand the topic. Interpretive inquiry is not validated by the
numbers of participants (Smith, 1991) or the repetition of themes (Moules, 2002), but
rather by its ability to ―open up and reveal something to us about our lives together
and what it is that is going on, often unvoiced, in the ever-so commonplace and day to
day acts‖ (Jardine, 1992, p. 157). Nurturing an understanding of the topic should add
to the understanding of our lives (Jardine, 1992). This nurturance can occur through
reading the literature that exists around the topic, exploring the history of the topic,
and gathering other‘s experiences with the topic.
In order to gather other‘s experience, I purposefully sought out families who
were willing to share their experiences of living with chronic cancer with me. The
inclusion criteria for this study included: 1) one member of the family must be
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receiving treatments to control the progression of their advanced cancer, 2) the family
must be aware of the prognosis, 3) the cancer patient and some family members were
willing to participate in the study, 4) the family was not in extreme emotional duress,
5) and that the family spoke English. Posters (see Appendix E), which invited
patients and their families who met these criteria to share their experience as part of a
research study, were placed in various locations at the local cancer centre, at
Wellsprings, and at the local day hospice facility.
Six families referred themselves to the study by calling the phone number on
the poster. Five of the participating families had a family member who was receiving
life-prolonging, but not curative treatments. One family wished to participate and
share their experience even though their father/husband had recently passed away.
As the deceased patient had been involved in my previous research into this topic and
had expressed a deep desire for him and his family to participate in this research, an
exception was made to allow this family to participate. As per the consent, all
participants agreed to take part in a one to two hour unstructured interview. Families
could select if they wanted to be interviewed together, individually, or in small
groups. The individual with cancer in each family was interviewed as well. Eleven
interviews were conducted in total.
Gathering data through conversation. In interpretive inquiry, conversation
is fundamental to understanding the topic differently. Although Gadamer never
specifically wrote about conducting a hermeneutic research conversation, he did write
about conducting hermeneutical conversations where two partners are bound together
by a common subject matter, and common language is found so that an agreement
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about meaning can be reached (1989, p. 389). In the context of a hermeneutic
research conversation, the researcher enters the conversation to understand something
specific. Binding and Tapp (2008) encouraged the researcher to approach these
research conversations from a ―hermeneutic stance‖ (p. 129). They defined this as
questioning ―from a stance of not knowing…We question in order to learn about the
topic…We question because the topic addressed us‖ (p. 129). By assuming a
hermeneutic stance, the researcher can nurture a deeper understanding of the topic
through conversations with the participants.
To create the space for conversations, interviews were set up with the
participating families in locations that were convenient for them. Many of the
interviews occurred in the participants‘ homes, but one participant requested to meet
at my home. Some families opted for all members to be interviewed together,
whereas other opted to be interviewed as husband and wife, separate from children.
The unstructured interviews were audio recorded, and transcribed verbatim. Each
family member was offered an opportunity to share their experiences of how chronic
cancer had affected their individual and shared experience of everyday life. Even
though I could not totally grasp the utter complexity of their experiences, or recover
the past as it actually was (Koch, 1998), a new and different understanding of this
topic emerged through our sharing of language and the back and forth of
conversation.
Conducting data analysis: Parts and the whole. Within interpretive
research, the interiority of understanding makes it difficult to bring the process of data
analysis to language (Davey, 2006). Although interpretation began prior to and
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during the interviews, the work of data analysis began in earnest once the interview
transcripts were created and I could read and reread the text with a continual focus on
how the other‘s shared experience was both familiar and strange. This was where my
own family experience was so valuable. It allowed me to constantly compare our
experience with incurable but treatable cancer with that of the participants. Although
my own family experience differed from the other participants, as Doug did not live
with chronic cancer as long as they did, there were definite similarities. As the
researcher, I purposely opened up this space in-between what our experience was and
that of the other families, and attempted to dwell in the tension, ―continually at the
mercy of the push and pull of ideas, images and their associations‖ (Davey, 2006, p.
113). The data analysis continued with the reading of each transcript as a whole, and
the identification of parts of the conversation that stood out to me as different,
powerful or informative. I then wrote about this in my journal. After that process
was completed for each transcript, I read over my journal entries, so that a view of the
whole could begin to take shape. It was from the process of reading, reflecting and
journaling that possible interpretations of the data emerged. I continually focused on
opportunities that emerged where familiar concepts around the chronic cancer
experience could be examined in new ways.
The data analysis continued in this circular fashion aligning well with the
Gadamarian concept that understanding emerges from within the hermeneutic circle
(Gadamer, 1989). Understanding requires moving between our expectations of
meaning based on our prior understanding of the subject matter and the specific
content at hand (Gadamer, 1989). As understanding has no end, interpretive research
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does not provide understandings that are ―fully determinate, unchanging, timeless,
and eternally selfsame‖ (Madison, 1988, p. 34). Instead, philosophical hermeneutics
raises the interpreter‘s awareness of the moments when difference occurs, not that
this discloses ―a definite or final meaning, only that what is revealed transforms what
we have understood of ourselves so that, as a result, we become different to
ourselves‖ (Davey, 2006, p. 123). The work of analysis within hermeneutic research
is to keep these moments of difference open, and exploring what understanding those
instances differently makes possible (Jardine, 1992).
Dwelling with the topic. Jardine (2008) referred to this process of spending
time with a topic as ―whiling over a topic‖ (p. 2). One needs to spend time lingering
with the analysis, ―working at it, composing it, composing ourselves over it,
remembering and cultivating one‘s memory of it‖ (p. 2). I have spent much time
whiling over this topic. As I described in chapter one, shortly after I completed my
last family interview, my brother in law was diagnosed with incurable but treatable
cancer. For eleven months, my family lived this topic. I wrote about this experience
in the introduction, as I needed to ―out it,‖ to ―give it a place‖ so that I could move
beyond it, but not to leave it behind but rather to reflect back on what both our
experiences and the experiences of the families I interviewed had to contribute to the
possibility of understanding this topic differently.
Working it out in writing. As discussed above writing is an integral aspect of
data analysis. It is not something that happens after the interpretation is done.
―Interpretive writing involves reading the text, interpreting, lifting from the pages as
it were, what the text is trying to say‖ (Binding & Tapp, 2008, p. 127). Koch (1998)
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explained how the maintenance of a journal is a helpful way to achieve this. Koch
offered that journaling moves beyond documenting occurrences, as it is productive. It
incorporates new thoughts that strike us, emotions that were experienced, and records
thoughts that interrupt and thoughts that linger. During our own family experience
my sister Marie and I kept journals, not particularly for this research purpose, but
rather to work out in writing our own learnings from this difficult experience.
Journaling during the data analysis phase was also a good opportunity for the me to
locate myself and my experience in the analysis, as hermeneutic data analysis is as
much about what struck me from the data, as it was about what was happening inside
myself self as a result. Journaling also provided me with an opportunity to bring
other voices into my writing from the literature, and from other media exposure.
Through this process of writing, exploring the literature, reading, thinking,
wondering, and writing again the researcher begins to create a memory of the topic
(Jardine, 2008). ―Memory, in such a case doesn‘t simply ‗store‘ these
events…Memory ‗works‘ each event in relation to the other, working to ‗place‘ them
properly and safely‖ (p. 4). Within this slow gathering and remembering, memories
are not only stored, but ―restored, measured, shaped, and formed in relation to and in
the witness of each other‖ (p. 5). It is from within this process of spending time with
the topic, writing about it, that concepts merge, familiarities are found, threads of
meaning are woven, and somehow what began as separate experiences and thoughts
emerges as something whole.
Composing the interpretation. In the final phase of interpretive writing, I
worked to compose my interpretation. To compose literally means to ―put together
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and arrange‖ (On-line Etymology Dictionary, 2013). In interpretive writing, the
attention to language is central. ―Words do not have a single unchanging meaning;
rather, they possess a fluctuating range of meaning, and precisely this fluctuation
constitutes the particular risk of speaking‖ (Gadamer, 1970/2007, p. 25). It is within
this slippage of linguistic meanings that the composition can begin (Davey, 2006). I
have tried to write in a way that allows the topic to be seen in all its nuances,
familiarities, and history. Importantly, I have not attempted to remove my own
subjectivity from the writing, but rather have applied myself to it ―with a sense of
responsibility to deepen understanding‖ (Moules, 2002, p. 16). Through committing
my interpretation to writing it has become both concrete and open, as it exists
independently from me, but can be reinterpreted again and again by future readers
which will once again free it from its one dimensional state (Binding & Tapp, 2008).
My interpretation of how the everyday lives of families are impacted by
chronic cancer revolves around contextualizing their experience as a hero‘s journey.
In the following chapters, I will expand on why I have selected this particular
interpretation as the most meaningful way to present the findings of this research. A
hero‘s journey is a journey which is often long in duration and particularly
challenging because of its path through unfamiliar lands. Hero‘s journeys have
heroes and villains, obstacles that must be overcome, and are organized around a
quest. Although I struggled against using the metaphor of a journey, as it somehow
seems so common and every day, this is exactly what brought me back to it. That our
life journey, which we anticipate will move seamlessly through childhood into
adulthood, and then ends somewhere in old age, can be interrupted by the arrival of
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cancer is important. It is what makes every example of how cancer affects families
familiar to all of us. We are all on a journey. Utilizing this as the central metaphor
was purposeful as hopefully it will allow for readers to see the familiar and yet
recognize the difference that chronic cancer brings.
Assessing Interpretive Rigor and Validity
The soundness of interpretive research must be ascertained differently than
research conducted within other paradigms because of the specific philosophical
underpinnings of the interpretive paradigm (Sandelowski, 1993). Angen (2000)
offered, when evaluating interpretive inquiry, the term validation is more helpful as it
implies the process that each reader must take up while coming to a judgment of the
trustworthiness of the research. Madison (1988) offered that although ―no
interpretation can ever be shown to be the correct one, some interpretations are
nonetheless clearly better than others‖ (p. 34). I offer the following parameters,
developed by Madison, prior to the interpretation chapters to help the reader engage
in their own process of validating the findings of this interpretive inquiry. The
parameters include: (a) Do the interpretations offer a coherent view of the topic? (b)
Is the meaning offered comprehensive? (c) Does the interpretation make visible the
work done to address the central lack of understanding of this topic? (d) Is the
interpretation thorough in that it attempts to deal with the questions that it poses? (e)
Does the interpretation deal with questions that others living this experience would be
concerned with? (f) Were enough historical and cultural details provided to tether the
topic to the life world? (g) Can the reader follow the author‘s interpretation to the
logical conclusion that the author drew. (h) Does the text open questions for the
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reader that are novel? (i) Does the research offer the potential for further discover,
research, or different thinking?
Opening a Space for Understanding to Emerge
It is my hope that, through the sharing of this interpretive writing, a space will
be created where those interested in this topic can dwell together amidst the historical,
cultural, experiential, and interpretive contexts offered, and that a different
understanding of this topic can emerge. I have resolved myself to the fact that this
topic will never be fully understood. I will never be done with this topic. There will
always be another case, another situation, another experience that will alert me to the
fact that my understanding is incomplete. I have also come to terms with the fact that
my interpretation could have been shaped differently and in shaping it as I did, I
inherently closed other possibilities off. In the next chapters, the families who
participated in this study will be introduced and the topic will begin to emerge anew
through the voices and experiences of the participants and through my interpretations.
This interpretive work has been painful. In many ways, it would have been so
much easier if I had selected an approach that had a method I could simply follow to
do things right. Watching my brother in law die, and being helpless to change the
fact illuminated the boundaries of human finitude. Walking with him and my family
on his hero‘s journey with cancer offered me a perspective I could not have achieved
without a personal experience like this. I opened this dissertation with a quote from
Caputo where he painted a picture of life as a narrow path bounded on either side by
chaos, disaster, and illness. In the follow chapters, I explore just how difficult
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walking that narrow path can be once incurable but treatable cancer enters the
family‘s reality.
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Chapter 4: Cancer as a Family Experience
Family is what you make it. It is made strong not by the number of heads
counted at the dinner table, but by the rituals created, the memories shared,
by the commitment of time, caring and love you show one another and the
hopes for the future you have as individuals and as a unit. (Kennedy, 2013)
Cancer does not just happen to an individual, it happens to a family. Family
can be defined in many ways, with the most common definition being parents and
children who live together as a unit (Oxford English Dictionary, 2005). Wright et al.
(1996) offered that ‗families are individuals who ‗give a damn‘ about each other‖ (p.
45). This definition of family expands beyond the traditional criterion of blood
relations, adoption, marriage, or cohabitation to hold the complexity of modern
families. Families are unique as every family has different boundaries, members,
strengths, weaknesses, beliefs, fears, memories, dreams, traditions, knowledge, and
are temporal in that they have a unique past, present, and hoped for futures. Families
also have multilayered functions which include care giving, economic provisions,
emotional support, and providing safety for its members (Hartrick Doanne & Varcoe,
2005). These functions take different positions of priority based on the structure of
the family, the tasks they are engaged in and the particular challenges that arise in
their day-to-day life (Buchbinder, Longhofer, & McCue, 2009). Families are
complex relational units that are the foundational unit of society (Hartrick Doanne &
Varcoe, 2005).
When cancer enters a family, how that particular family will respond is based
on the unique elements identified above. The life stage of the family, the type of
cancer they face, their ethnicity and culture, their financial situation, and who in the
family is sick also have specific impacts on the family experience (Plant, 2008).
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Seven families participated in this research study, six through structured interviews,
and my own family through direct experience. The families included in this study
varied in many ways including their structure, socio-economic status, and members
who chose to participate, but were all from similar cultural backgrounds. All families
shared how living with incurable but treatable cancer had irrevocably changed their
families‘ lives.
Introducing the Families
The Wilsons. Mr. Wilson was part of my master‘s study, but sadly passed
away from his cancer prior to us being able to conduct the family interview for this
research. As he passionately wanted his family to participate in this study and
indicated his consent in writing prior to his death, I interviewed his family about six
months after he died. The interview participants consisted of Mrs. Wilson, and her
three adult daughters (Shannon, Jodi, and Beth). Mr. Wilson had Multiple Myeloma,
a type of blood cancer which is incurable upon diagnosis. The aim of all therapy for
Multiple Myeloma is life prolongation and optimization of quality. Fortunately, over
the past decade a number of new treatments for Myeloma have increased the
possibility of controlling the disease and thus the average life expectance with
Myeloma continues to rise (Rajkumar, 2012).
Mr. Wilson lived with Multiple Myeloma for over five years. During that
time period, he had two stem cell transplants, which failed to deliver remission.
Therefore he required continual treatments to achieve disease control. The Wilson
family shared their experiences of loss, anger, joy, and hope on their collective 5-year
journey with their dad. They spoke of the constant struggle to cope with uncertainty
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of what was coming next. The Wilsons were the only family interviewed who had
actually experienced the death of their loved one.
The Smiths. The Smith family was also living with Multiple Myeloma,
except in their family situation, the cancer had affected Mrs. Smith. At the time of
our interview, Mrs. Smith had long since outlived her prognosis, as she had been
living with Multiple Myeloma for 11 years. Diagnosed at the age of 35, she
underwent a stem cell transplant, which resulted in a three-year remission. During
those years, no other active treatments were required to control her disease. However,
since her cancer reoccurred seven years ago, Mrs. Smith has been receiving continual,
ongoing treatments for disease control.
The Smith family elected to have me conduct two interviews, the first with Mr.
and Mrs. Smith, and the second with their three adult daughters (Jessica, Sarah, and
Megan). Their son chose to not participate. The Smith family was the only family
interviewed where the cancer journey intersected with the family‘s primary task of
raising children. At diagnosis, the children‘s ages ranged from 10 years old to 18.
This interview offered many insights into the complexity of juggling ongoing noncurative cancer treatments with the day-to-day realities of a young family. Another
interesting part of this family story was that, at the time of the interview, Mrs. Smith
was still working full time due to financial need, even though she suffered numerous
side effects, had significant physical limitations from her ongoing treatments, and was
technically considered palliative.
The Olsens. The Olsen family differed from the Smith and Wilson families
in that the Olsens were both in their later life when cancer entered their world. At the
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time of our interview, Mr. Olsen, who was retired, had been wrestling with Multiple
Myeloma for two years. Mrs. Olsen was still working. Mr. and Mrs. Olsen, who had
been married for 30 years, both had children from previous marriages, but had no
children together. None of the children lived with them. They had a couple of
grandchildren. Mr. Olsen did not qualify for a stem cell transplant due to his age at
diagnosis so, since diagnosis he had been on ongoing non-curative treatments.
A unique aspect in the Olsen family experience was that they knew for over
25 years that he was at increased risk for Myeloma because Mr. Olsen had a blood
condition called MGus. MGus stands for monoclonal gammopathy of undetermined
significance and is a non-cancerous condition (Gravenor, 2010). MGus occurs when
plasma cells begin to produce an excessive amount of one particular type of antibody
called a para-protein. Many people with MGus never experience any negative effects
from this condition, as this para-protein is neither helpful nor harmful in moderate
amounts. However, as each year passes, a person‘s risk of developing Multiple
Myeloma increases by about 1-2 % annually (Gravenor, 2010).
The Johnsons. The Johnsons were also living with Multiple Myeloma. Mr.
and Mrs. Johnson were in their late 50s and had two grown children. At the time of
the interview, Mr. Johnson was on long-term disability, and Mrs. Johnson had
recently decreased her hours of work to a casual position so that she could spend
more time with Mr. Johnson. At the time of the interview, their daughter Kristi and
her son Daniel (7 years old) were living with them. The Johnson‘s adult son chose
not participate in the interview.
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In 2003, Mr. Johnson became aware that something was not right in his blood.
He was also told that had MGus. However, unlike Mr. Olsen‘s long experience with
MGus, Mr. Johnson‘s MGus turned into Multiple Myeloma after just four years. Mr.
Johnson‘s experience with Multiple Myeloma also differed from the other
participants who were living with the same type of cancer because very early on in
his journey, Mr. Johnson‘s kidneys were severely damaged by the Multiple Myeloma
resulting in total kidney failure. At the time of our interview, Mr. Johnson was on
peritoneal dialysis four times a day. Mr. Johnson‘s reliance on peritoneal dialysis
made controlling his Myeloma far more complicated than usual. Finding the optimal
dosing of his cancer therapies was more challenging because it is impossible to know
exactly how much medication was being removed through the numerous daily
peritoneal dialysis exchanges required to manage his total renal failure.
The Andersons. The fifth family that I interviewed was the Anderson family.
With this family, I conducted two interviews. In the first, I spoke with Mr. Anderson
who was in his mid fifties and had been living with incurable but treatable colorectal
cancer for 4 years. Mr. Anderson had one child from his first marriage. He had remarried a few years ago, however his current wife did not participate in the study. I
conducted a second interview with his daughter (Vanessa) and his granddaughter,
Keisha. At the time of the interview Keisha was 9 years old.
Unlike the disease trajectory of Multiple Myeloma which is classified as
incurable from diagnosis, Mr. Anderson‘s initial surgical treatments for his colorectal
cancer was offered with curative intent. Unfortunately, the disease progressed shortly
after his surgery and spread to his lungs. From then on, treatments received have
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been for disease control. This was the only family where a young child was able to
share their perspective of the impact that living with incurable but treatable cancer
had on their family. Although Mr. Anderson hoped that his wife would participate in
this research, at the time of the interview she was not emotionally prepared to talk
about her experience.
The Browns. The sixth family that I interviewed was the Brown family. This
family was also unique in that Ms. Brown was in her mid-fifties and lived alone in
Calgary, while her family resided in Saskatchewan. Ms. Brown had been divorced
for many years, and had three adult children. Ms. Brown‘s daughter, Janaya,
participated in an interview over the phone from her home in Saskatchewan. I also
conducted an interview with Ms. Brown‘s two sisters, Rhoda and Donna, when they
were in town visiting their sister. At the time of the interview, Ms. Brown had been
living with Multiple Myeloma for seven years. She was a participant in my master‘s
research, and participated in numerous public speaking events about her experience of
living with chronic cancer. Unfortunately, six months prior to this dissertation being
completed, Ms. Brown was hospitalized as a result of disease progression. While
being prepared for a second stem cell transplant as a ―last ditch‖ effort to slow or stall
her cancer‘s progression, she died from complications. At the time of Ms. Brown‘s
death, she had been living with Multiple Myeloma for 8 years.
My Family. The fact that incurable but treatable cancer entered my own
family just as I was moving into the data analysis phase of this research was uncanny.
I discussed with Marie and Doug the idea of formally including them in my
dissertation and they indicated they wanted their experiences integrated. They both
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requested that I use their real names, as they wanted their story to be known and were
not concerned with the fact that their contributions and experiences would be
recognized.
At diagnosis, Doug and Marie were both in their early 50s. Their one son,
Levi, was 13, and in grade eight. Doug owned and operated his own successful
renovation company and Marie was vice-principal at a school near their home. Up
until Doug‘s diagnosis, he was the picture of health. He was a vegetarian, ran
marathons, and never smoked. His diagnosis with stage four lung cancer came as a
shock to all that knew him. Post diagnosis, his cancer was attributed to asbestos
exposure from years earlier when he worked with his father‘s company demolishing
old high-rises. Doug and Marie were told upon diagnosis that his disease was
incurable, and the focus of any treatment would be control and symptom management.
Doug received radiation therapy for his brain metastasis and bone metastasis followed
by six months of chemotherapy to slow his cancer‘s progression. Unfortunately, his
cancer grew and 11 months after his diagnosis Doug died of his cancer at the age of
51. The major difference between our experience and the other participating families
was that the control that Doug‘s treatments brought was shorter in duration than other
participants.
Using Metaphors to Make Sense of the Varied Family Experiences
The arrival of cancer within a family profoundly disrupts their everyday world
and alters their futures, but how this experience plays out in the lives of each family is
as varied as the patterns of a snowflake. Just as no two snowflakes are the same,
neither are two families. They define themselves differently, have different histories,
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and each are at different stages of maturity. Just as every snowflake is pulled by the
universal force of gravity and will find a resting place on the ground, every family
with incurable but treatable cancer is moving towards a common inevitable endpoint
but will all travel their own path. Through the voices of these families and through
my own experiences, I have come to recognize to recognize that each journey with
incurable but treatable cancer is exquisitely unique, and yet in many ways, similar.
Kleinmann (1988) wrote that chronic disease is defined by its many sided and
differing effects on those who live with it, but cautioned that focusing too much on
the content of each individual experience makes it difficult to understand the broader
meaning of the experience. As I have tried to make sense of the data and my own
experience, I have navigated between the unique experiences of individuals and the
generalities, and explored the tension between the similar and the different. Gadamer
(1989) wrote that understanding emerges from within such polarity.
The families all referred to their unfolding experience of living with cancer as
being on a journey. Some spoke of living with chronic cancer as a new chapter in
their life journey, while others spoke of cancer as an entirely new journey. Framing
the experience of living with cancer within the metaphor a journey seemed to help the
families explain their experiences. Becker (1999) argued that metaphors are cultural
resources that people draw on to re-order their lives after a major disruption is
experienced. As metaphors are both interpretive and creative, they are useful when a
crossroad has been reached that will forever separate what has been and what can be
going forward. Metaphors also facilitate the ability of someone outside of the
experience to recognize something of their own experience in it. For all of these
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reasons, I have chosen to use the metaphor of a journey as the organizing metaphor of
this dissertation.
Life as a Journey
The meaning of the word journey has remained very constant from its original
Old French meaning from the mid 14th century of ―to travel from one place to
another‖ (On-line Etymology Dictionary, 2013). When traveling from one place to
another, travelers‘ experience many new things, and these experiences, if they are
meaningful will endure as significant memories of the journey. Just as a journey
occurs over time, Gadamer (1989) wrote that ―experience is a process‖ (p. 347) and
thus includes a temporal dimension. Although in English there is only word for
experience, in German there are two: erlibnis and erahrung (Gadamer, 1989).
Erlibnis comes from the German word leben which means to live and refers to first
hand experiences (Vessey, 2007). Erfahrung refers to experiences that connect
directly to judgments and constructed from the German word fahren which means to
travel. Erfahrung infers that the realizations gained through experiences move and
transform the person who has undergone the experience (Vessey, 2007). In this way
life itself ―is ordered toward the formation of enduring units of significance. Life
interprets itself. Life has a hermeneutical structure‖ (Gadamer, 1989, p. 220). As a
result of this inner connection of life, experience and understanding, life as a journey
is a pervasive metaphor in today‘s world (Becker, 1999).
People go through life from birth to death in much the same way that people
journey from a starting point to a destination. Phrases that link journeying and life
such as choosing one‘s path in life, putting one foot in front of the other, or getting
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off track are common place in our everyday language. They represent a predominant
discourse in Western culture that conceptualizes life as predictable, knowable,
ordered, continuous, and linear (Becker, 1999). The life as a journey metaphor is so
commonly used in our everyday language that it is often not even recognized as a
metaphor (Turner, 1997).
The life as a journey metaphor allows the events and actions of everyday life
to be understood as linked and orderly, and encapsulates the unfolding temporal
nature of experience. The journey metaphor helps to normalize the unexpected,
because on a journey there is no way to know what is around the next corner. It
provides a framework to tell one‘s story of a life lived. Individuals can find meanings
in the full range of their personal experiences from major events to everyday
experiences by framing them as part of their journey, reinforcing that there is an
internal structure and logic to their lives (Turner, 1997).
The common use of the life as a journey metaphor is not just a modern
phenomenon, it can be found in myths, narratives, and stories from every culture from
ancient times to the present (Campbell, 2008). Campbell, who was an American
mythologist, proposed that the journey metaphor has existed from the beginning of
our awareness and that the whole of humanity has been involved in reciting a single
journey story over and over again. Campbell argued that the prevalence of myths that
revolve around a similar journey metaphor is related to the journey metaphor‘s ability
to reveal deep truths about the experience of human life and its ability to teach people
how to move through the stages of life.
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Campbell (2008) referred to this one common story that has been retold across
history as the ―hero‘s journey‖ (p. 23). The plot of this monomyth involves a hero
who must, for some reason, venture away from their familiar territory into a world
that is unknown. Once the hero reluctantly enters the unknown world, they must face
many challenges, overcome numerous obstacles, and learn to find their way in this
foreign world. Somewhere on this journey, the hero often meets a guide who gives
advice on how to navigate and survive in the unknown territory. The climax of the
story revolves around the hero facing the ultimate challenge in which their life is in
peril. In this monomythic structure represented in Figure 1, the hero survives the
ordeal and is transformed by the experience, and then journeys back to their ordinary
world to share their learning with all who remained safely in the land of the known.
Figure 1: The hero‘s journey. This figure depicts the cyclic hero‘s journey as
developed by Cambpell (2008). Image retrieved from Wikimedia commons which
provides copyright free material
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Living with Cancer as a Hero’s Journey
The story of the hero‘s journey has survived the test of time because it brings
meaning to the events of life, and offers a collective recognition of the unpredictable
nature of life. Sometimes things happen in life for no apparent reason like the arrival
of cancer in the life of a family. A cancer diagnosis instantaneously transforms the
family‘s journey from one that is predictable, orderly, and planned into one which is
unfamiliar, inhospitable, and frightening. Cohen (1993) described the moment of
diagnosis as shattering the relatively stable, taken-for-granted pre-illness world. The
arrival of cancer ruptures the family‘s pre-illness world. It is gone, and cannot be
reclaimed. The family cannot go back. Once cancer has arrived, they are always,
already on a new journey—one which revolves around figuring out what can be done
about their cancer, how to live with the ramifications, while still meeting the
everyday needs of all family members. The phrase ―you have cancer‖ transports
every cancer patient and their family, regardless of their type of cancer or its
prognosis, into the unknown world of cancer. The moment of diagnosis becomes a
milestone seared into the family‘s story, forever dividing life into what happened
before cancer arrived, and the journey after.
The crisis of diagnosis. Cancer always arrives unexpectedly (Fitch, 2009). It
disrupts the everyday, and its arrival erases the future that was envisioned. It does not
play fair. It does not selectively arrive to people who are taking risks with their
health, rather it can happen to every kind of person at every age, and once it arrives,
life can never fully return to what it was before. Cancer‘s arrival precipitates a crisis.
The word crisis is linked etymologically to the Greek word krisis, meaning ―turning
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point‖ (On-line Etymology Dictionary, 2013). The moment cancer is confirmed a
turning point has occurred in the life journey of a family. It is a moment when the
trends of all future events are determined (Oxford English Dictionary, 2005). All
families participating in this study recalled the moment when cancer became a reality
in their world in vivid detail, and spoke emotionally about how the arrival of cancer
initiated a change that was beyond their control.
(The Wilsons) We were so shocked…he was so healthy…we couldn‘t believe
this was happening to him…We were hoping it was a kidney stone, but it was
the worst case scenario. We just couldn‘t believe we were in that spot, and
dealing with it. He was so young, and we were so young. We were just so
shocked. …our grandfather had cancer, but it was different, he was older, he
was a smoker, you kind of expect something like that, but not to happen to our
dad, he was so healthy.
Mrs. Brown‘s daughter, Janaya, spoke of how finding out her mom had cancer was a
crushing blow.
(Janaya) I guess it was probably just pretty much a crushing blow. She was
living in Calgary at the time and we were home here. So she came home,
didn‘t tell any of us that she was coming home and so she actually just showed
up at our house. And so that was quite a nice surprise. And then she told us
that she had been diagnosed and -- gosh, I don‘t even remember a whole lot
other than it was devastating at the time. And I couldn‘t really think forward,
and I didn‘t have a whole lot of hope. To me it was a death sentence, I guess.
In my own experience, I clearly remember the day Doug was diagnosed. My
sister called me at my office at 10:30 in the morning to tell me that Doug had been
admitted to the hospital because he had a seizure at work. Doug had no history of
seizures or neurological issues, so this came as a complete shock. Marie told me that,
once admitted, he had been sent for a CT of his head that had shown some lesions,
and that he was off having more scans. We talked a bit more about how Doug was
feeling prior to his seizure. Unfortunately, based on what she told me, I felt fairly
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certain that Doug and Marie were about to receive a very dire diagnosis. I told her
that I was going to drop everything and come as soon as I could to the hospital.
Every moment of the three-hour drive between my home and theirs, I hoped and
prayed that I would arrive prior to a diagnosis being delivered, but unfortunately this
was not to be. When I was about 30 minutes away from the hospital, Marie called me,
and through her sobs, told me that the doctor had just told them that Doug had stage
four lung cancer.
(Marie) I just remember thinking that they must be mistaken. How could
Doug have lung cancer? He did not smoke. He was so healthy. They must
have looked at the wrong scans. And what did stage four mean? I had no
idea. Was there a stage 6 or 7? I had no idea what they meant by stage four.
They told us he had cancer in his brain, bones and in his one lung. We just
sat there stunned. This could not really be happening. It was just impossible.
People often only recognize health when it becomes compromised, but the
ability to have an everyday life actually relies on the proper functioning of our bodies
(Becker, 1999). What happens when a body breaks down involves physical processes
within the body, but the impact of those physical processes extend beyond the body to
the life that is lived through the body, and to the life of the family in which that body
is embedded (Frank, 1991). After a cancer diagnosis is confirmed, family members
can often look back and see the physical signs indicating that something out of the
ordinary was going on, but until the diagnosis is made, the connection between the
signs and the possibility of cancer is often not perceived.
In the Smith family experience, identifying what was wrong took over a year.
During this time of not knowing what was wrong, Mrs. Smith‘s increasing levels of
pain impacted their family‘s life dramatically.
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(Mrs. Smith) It took a really long time for them to figure it out. It took about a
year; a year of pain. Bone pain, which I didn‘t know at the time that‘s what it
was excruciating; at times I couldn‘t get out of bed, couldn‘t get out of a car,
couldn‘t walk downstairs, and it just got progressively worse, but nobody was
looking for myeloma. There was always some other advice—I can‘t tell you
all the things they told me to do, physiotherapy, massage, anti-inflammatory
medications… whatever. They just weren‘t looking for Myeloma in a 35-yearold healthy woman…And you can only go to the doctor so many times and be
told they don‘t know what is wrong -- I mean one time the doctor actually told
me to go to physio and I was like oh, okay…she had no idea how much pain I
was having. It was bad. It was really bad. I mean I couldn‘t sleep because if
I turned the wrong way at night it was excruciating. I remember coming back
from summer holidays and thinking I can‘t do this anymore. I couldn‘t even
look after my kids anymore. I didn‘t know what was wrong, just that
something was and we all needed some serious help.
In the Anderson Family, Mr. Anderson described how he had experienced troubling
symptoms for 2 years prior to being diagnosed, and how he just wrote them off as
being normal, a result of his age, or because of his busy life.
(Mr. Anderson) The cancer journey…I guess…well, I used to fly fish and
guide here on the river, and in the summer in 2007 I started noticing
exhaustion problems. I just attributed that to being in poor shape, and
dehydration during the summer heat. I was working 12-14 hour days at the
time, so that is all I thought it was…exhaustion.
In the summer of 2008, I noticed I was short fused…I mean I had no patience,
no energy. I was having a hard time coping with my long work days, and then
I started having bowel problems too.
We happened to have friends come and visit us, and she had been treated for
colon cancer, so I asked her some questions about how she found out she had
cancer, and she said she had blood in her stool. At that point I had not said
anything to my wife, but I was already having that symptom, but thought it
was just hemorrhoids.
It was after that conversation with a friend that Mr. Anderson went to his doctor to
report his rectal bleeding which led to his diagnosis.
That motivated me to talk to my doctor in October 2008. He booked me for a
sigmoidoscopy, but that did not happen till March 2009. It took six months
for me to get that test done. Well when they were doing this test, he was
barely inside of me when he said ―oh my‖. As soon as I heard that I though
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―oh crap‖. He took a small sample of that and then told me I needed to speak
to a surgeon. He left the room and called the surgeon right away. He came
back in and told me that I was to see the surgeon the next day. He told me
that he had been doing sigmoidoscopies for 20 years, and he had never seen
one like this…He said ―this one really scares me.‖ I went home to worry and
wait for surgery. At that point we still did not know it was cancer, but I was
pretty sure. I had the surgery on April 9th, and the surgeon confirmed it was
cancer.
Doug‘s situation was similar in that it was only once the diagnosis had been
made, previous minor physical annoyances were understood as the sinister symptoms
of the growth and spread of the cancer cells deep within his body.
(Marie) It seemed like his seizure came out of the blue, but now that I look
back there were some small things that maybe we should have recognized.
Doug‘s energy had not been right for a while. Six months ago he bought
himself a juicer because he just thought he could improve his energy level by
increasing his vegetable intake. Then about three weeks before his seizure he
started complaining of a sore back. We just thought he had strained it curling.
He went to the chiropractor and a masseuse to deal with this new ache. That
had always worked in the past, but not this time. About two weeks before his
seizure, he began waking up with headaches, and we thought it was because
his pillow was too flat, so we bought him a new pillow to try. The symptom
that really got our attention was when 4 days before his seizure his right foot
was a little droopy. It just wasn‘t working right, but Doug was convinced it
was related to his sore back, and thought maybe he had a pinched nerve.
When his foot got droopy we called the doctor and booked an appointment for
the next week. He had his seizure on Thursday. We never made it to that
appointment.
In six out of the seven families in this study, the arrival of cancer took them
directly into a journey with incurable but treatable cancer, as their particular cancers
were incurable upon diagnosis. For the Anderson family, their cancer diagnosis came
with the possibility of a cure through surgical intervention.
(Mr. Anderson) So they did the surgery and removed the entire tumor and put
me back together again. They tested the lymph nodes too, and they all came
back negative…but the tumor was definitely cancerous. They said ―We got
the entire tumor. We looked at your lymph nodes and there was nothing‖.
Based on that the surgeon said he was pretty confident that I was going to be
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ok.…they were recommending a chemo regiment just to be on the safe side,
but then life would go on…they told me that they got it all…
The hope for a cure for cancer is pervasive. Etymologically, the word cure
originates from the Latin word curare which means to take care of (On-line
Etymology Dictionary, 2013), but the modern understanding of cure is healing or
restoring health, or finding a remedy (Oxford English Dictionary, 2005). Families
faced with cancer hope for a remedy that will cure them and return them to health.
Families who believe that their cancer will be cured tell restitution stories which
revolve around a similar plot line; ―yesterday I was healthy, today I am sick, but
tomorrow I will be healthy again‖ (Frank, 1995, p. 77). In Mr. Anderson‘s situation,
all evidence supported that the cancer had been successfully removed, and yet six
weeks after surgery, new evidence emerged that showed his cancer had spread. The
spread meant that Mr. Anderson‘s cancer was no longer considered curable. The
focus of his treatments shifted from cure to control, but Mr. Anderson recalled that it
took him a full year to grasp exactly what that meant.
(Mr. Anderson) Well, I was back to see my surgeon, you know to check the
scar, and he said something about ―it was a type 2 but now it is a type 4
because it is in an organ now‖ But nobody explained that to me. No one
clarified what that really meant, you know… So when the Oncologist was
explaining this all to me later, at my cancer clinic appointment, about the 25
small nodules in my lungs, I still did not get it. I did not understand what they
were saying…The process just went on…they scheduled me for a port, and
then I was scheduled for my first treatment the last week of June 2009. I still
did not know how bad this cancer was. To me, with all the treatments, and all
the news, I was still positive that I was curable. I did not realize I was
palliative.
So I underwent about a year of treatment, and then my original oncologist
retired so I met a new doctor…so me being the joker I am asked him ―hey doc,
what is your success rate with something like this?‖… and he stopped…he
just stopped what he was doing and looked at me and said ―Mr.
Anderson…We can‘t beat it; we can only prolong your life.‖
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The punch of being told you have incurable but treatable cancer changes
everything. In the hero‘s journey, after the hero faces the ultimate challenge and
survives, they can return to their familiar world with the wisdom gained from the
experience. Up until families are told that their cancer is incurable, hope remains that
they will be able to overcome cancer and have a hero‘s return to their everyday life.
However, once cancer is labeled as incurable, the chance of such a heroic return to
everyday life is erased. Families can no longer tell restitution stories; instead, they
find themselves in a chaotic state where life without cancer is no longer a viable
anticipated future (Frank, 1995). What the future will look becomes uncertain. The
reality that the family member with cancer will never be without cancer is a painful
reality.
In situations where families were initially told their cancer was curable, being
told that their cancer is now incurable represents another milestone, another turning
point in their journey. In these situations, the family‘s return to a world without
cancer becomes contingent on the death of their family member. The restitution plot
line is destroyed. There will be no return to a pre-cancer norm for the individual or
family with cancer. Only when their loved one dies, will the family find themselves
back in a world that does not revolve around cancer and its treatment, and even then,
their world will never be the same again.
Moving beyond the crisis. The crisis of diagnosis is a moment which the
family never forgets. Years into the future, exactly how family members found out
about the incurable diagnosis will be recalled in vivid detail because their lives
changed that moment. The diagnosis marks the beginning of the journey with cancer
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and the crossing of the threshold into the unknown world of cancer. Although the
family feels their world has been destroyed, and question how they will go on, time
continues to pass, and life does go on.
I will never forget arriving at the hospital that day when Doug was diagnosed.
I got off the elevator and there was my sister, standing outside the door to Doug‘s
hospital room. I ran to her and threw my arms around her, and we wept. We were
ushered into a quiet room across the hall, and two young doctors appeared. The
conversation was short and painful. The doctor explained that based on the clinical
evidence they were 99 % sure that Doug had an aggressive type of lung cancer that
had already spread to his lymph nodes, brain, and bones, and that his life expectancy
was about 3 months. More words were exchanged, but I cannot remember them
exactly. Then the doctors got up and left the room, pulling the door closed behind
them.
Marie and I sat in stunned silence, with tears rolling down our faces,
wondering what came next. I have no idea how long we sat there, but at some point I
remember speaking to offer my best guess at what would happen next and what I
thought we needed to do. He would need a bronchoscopy to confirm the diagnosis.
He would need a referral to the local cancer facility. They would discuss treatment
options for his lung cancer, and radiation for his brain. That was going to be the
priority. We needed to tell our families. Doug‘s Mom and Dad were on holidays in
Mexico, and we needed to call them. Who should we tell first? How were we going
to tell Levi? How could we face Doug?
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Although neither of us wanted to face the realities that were waiting outside
that door, we both knew that we had to. As much as we wished it was not real, it was,
and there was no way out. The only way we could move was forward. We got up,
and together we opened that door and stepped out into the chaos. With every person
that we told, the chaos spread, rippling out like shock waves from an earthquake.
Somehow, we made it through the next few hours, we did what we had to do, and
night came. Marie stayed with Doug at the hospital, and I took Levi home so that he
could sleep. The poor kid was broken. I held him in my arms until his sobs settled
and his tears dried and he fell into a restless sleep. I must have slept, because
morning came, and a new day dawned. Levi and I got up and ate something. I
remember thinking as we drove to the hospital how strange it was that everything
looked so normal, and yet nothing would ever be normal again. That day we started
our hero‘s journey into uncharted territory, but at least we were together. That day an
old family prayer took on new significance for me.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
(Niebuhr, 1934)
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Chapter 5: Crossing the Threshold into an Unknown World
Only the unknown frightens men. But once a man has faced the unknown, that
terror becomes known. (de Saint-Exupery, 2013)
The arrival of cancer erases the harmony and predictability of ordinary life
(Rassmussen & Elverdam, 2008) and transports families to an unfamiliar, uncertain,
and frightening world. As discussed in the previous chapter, families clearly recall
the watershed moment when they became aware of their cancer, and how its arrival
shattered their anticipated future. Families come to realize that they have crossed a
threshold, and although they can remember where they were, they cannot return.
Etymologically, threshold links back to the old English word precold, which meant
―doorsill, point of entry‖ (On-line Etymology Dictionary, 2013). Once a family finds
out they have cancer, they are already across the threshold. They can neither turn
back, nor stand still. They must venture forward into the foreign and unknown world.
(Mrs. Wilson) I guess at the root of all this is that you are never ready for
what comes at you on this journey. There are different degrees of messiness
in life, and you are prepared for some degree of challenges in your everyday
life, but you don‘t want this heavy wet stuff tossed at you. You want the more
manageable stuff. But you don‘t get a choice about what comes your way.
You just have to deal with it the best you can.
In the monomythic structure of the hero‘s journey, the first step of the journey
is referred to as ―crossing the threshold‖ (Campbell, 2008, p. 64). Stepping across a
threshold takes courage, as the hero recognizes the risk of the unknown and yet steps
into it. Families with cancer differ from the mythic heroes as they do not choose
bravely to cross the threshold; rather families are catapulted across, transported by the
diagnosis into the world of cancer. Venturing forward is their only option. As
families journey into the unknown, they learn to make compromises, let go of ideas
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that do not fit anymore, make decisions, and keep moving forward even when the
journey is difficult.
(Mrs. Wilson) I wouldn‘t say I was totally dependent on him, nor was he on
me, but we definitely had a partnership. He was the outgoing one, whereas I
was not so much…and then all of a sudden he gets this diagnosis and I‘m the
one that has to step up to bat. I don‘t think I even consciously thought about
that, I just did it. It‘s just part of that partnership…when your partner needs
something-- you have to figure out how to become what he needs. As he got
sicker, I had to do more. You just kind of fall into that role of helping
however you can, being the care-giver. That‘s just what you do. That‘s why
you‘re here. I found my purpose in life by being there to care for him.
Campbell‘s (2008) book title, A Hero with a Thousand Faces, is very fitting.
Heroes come in all shapes and sizes, and demonstrate their heroism in different ways.
How people show their heroism is as varied as the faces of the family members who
are on this difficult journey.
(Ms. Brown) How we die affects our families, because…well, if a bus hits you,
there is no warning. Nobody gets to plan or deal with things. Their loved one
is just gone…and on the other end of the spectrum is something like the
journey I am on…a long drawn out journey of dying…when you are living
with something incurable but treatable, there is no clear path, you have to
face each problem as it comes. Ultimately the problem that can‘t be
overcome is that you are on a long drawn out path to death, and your family
is right there with you every step of the way.
Venturing into the Chaos
In the hero‘s journey monomyth, the hero crosses the threshold only when
they have accepted the call to adventure (Campbell, 2008). For families, there is no
option, nor do they see it as an adventure. In contract to heroes who are excited by
the notion of an adventure, families fear and dread what lies ahead, and yet they move
forward. Families may not fit the big ―H‖ hero stereotype, but they display little ―h‖
heroism everyday as they journey in the unknown. Therefore, I have not used the
language of adventure to capture the family‘s journey in the unknown world of cancer.
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Instead, I have chosen to use the language of venturing. The word venture originated
in the 1500s as a non-romantic reference to a ―risky undertaking‖ (On-line Etymology
dictionary, 2013) and thus fits better with the families journey than the more romantic
notion of an adventure.
To venture into the unknown world of cancer is to move forward without the
comforting belief that life is predictable, coherent, and linear. The predominant ideas
that Western families hold about the courses their lives will take are based on the
cultural values of productivity, setting goals for the future, and human ability to
control the environment (Becker, 1999). The arrival of incurable cancer shatters
these beliefs, and illuminates the lack of control that the family actually has. Families
must move forward knowing the brutal reality that things happen for no reason, and
that control is an illusion.
(Marie) The doctor who told us Doug‘s diagnosis was a young doctor. He
came into our hospital room, stood at the bedside and simply told us that all
the tests confirmed that Doug had stage 4 lung cancer...and that although
there were treatments that could slow the cancer down, there was no cure for
this type of lung cancer. I just stood there in shock. I think I said something
like ―you have got to be kidding‖ to which he said ―no I am not kidding‖.
Then he asked if we had any questions. I did not even know what to ask. At
that moment nothing was sinking in…I remember thinking, ―Oh my God, I am
going to be a single mom.‖ I was shattered. Doug was not going to be with
me to see Levi graduate or to go on vacations with us. We were not going to
grow old together. This couldn‘t be happening and yet it was.
Families must venture forward without any of the familiar securities of the
past. Dreams about how their lives would unfold evaporate with the reality of
incurable cancer. Goals for the future become contingent on how successfully the
cancer can be treated, and how long it can be controlled. Cancer illuminates a fatal
flaw in their world. They are not in complete control of their life path. The
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recognition ―there is nothing deep to sustain what we most cherish, no guardrails
around existence, no net to catch us‖ (Caputo, 1993, p. 240) causes the family to
recognize the fundamental uncertainty of the world. Families find themselves in a
world of chaos.
Chaos originates from the Greek word khaos meaning, ―that which gapes open
and is vast and empty‖ (On-line Etymology Dictionary, 2013). In Greek mythology,
Khaos, was the first goddess to emerge at the creation of the universe. Khaos ruled
the vacant and infinite space. Out of this void, Gaia (earth), Tartaros (the
underworld), and Eros (Love, the bringer of life) emerged to provide structure and
predictability. However, as structure emerged, Khaos remained the goddess of the
space between sky and earth (Theoi Greek Mythology, 2011). Just as air that is so
vital to life invisibly fills the space between earth and sky, chaos remains part of our
everyday world, invisibly surrounding all of us, waiting to be recognized, and to
consume us.
(Vanessa, Mr. Johnson‘s daughter) It is hard to believe that one day I went to
bed and the world was normal, and the next day everything changed. I did
not see Dad‘s cancer coming. I had no idea that he was having symptoms.
Maybe if we lived in the same house I would have known something was up. I
did not handle the news well. All of a sudden I started having anxiety attacks.
All of a sudden I couldn‘t even handle my own everyday life. I had to go on
medications and then I went for counseling. I think the thing that helped the
most was that Dad and I went to counseling together. We figured out how to
go forward in this strange new world together.
Chaos follows the diagnosis of cancer because cancer erases the map for the
future. The future gapes open without shape or structure. What the next step should
be becomes uncertain, unknowable, and yet families must proceed. Where the family
once perceived predictability, order, and structure, now decisions must be made
without the usual guardrails and signposts of the everyday.
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(Marie) I did not know what the next step was supposed to be. Our world was
upside down. What would happen next? What should we do?
The abyss was another name used to speak of the primal chaos that existed
before the creation of earth and sky (Oxford English Dictionary, 2005) and is linked
etymologically to the Greek word abyssos meaning bottomless (On-line Etymology
Dictionary, 2013). Caputo (1993) used the word ―abyss…as…another name for what
happens…for the fact that events happen because they happen‖ (p. 239). The crisis
precipitated by the arrival of cancer in the family‘s world results in chaos, exposes the
abyss, and makes knowing what to do next very difficult. That the sun will come up
and another day will appear, but beyond that detail it seems there is just vast and
uncharted space.
(Marie) All of a sudden, I could not even plan a day ahead. I had no idea what
the next day would bring. My world got very small. There was me, Doug and
Levi. I knew that morning would come, and I hoped that at the end of the day
we would all go to bed in our own house, but I did not have any ability to fill
in the blank of what would happen in between.
Cohen (1993) argued that a person who became fully aware of all the
uncertainties of everyday life would become incapacitated. She asserted that
conceiving events as unpredictable consequences of uncontrollable forces would
destroy any sense of coherence in everyday life. Cohen theorized that, to protect
ourselves from the fundamental instability of our world, humans cognitively create a
livable world based on accumulated knowledge, values, beliefs, and expectations.
Within this assumptive world, decisions are made and actions are taken based on
predictable events, routines, behaviors and social relationships. Common sense
knowledge of everyday life and a human preference to believe that what has been true
in the past will continue to be true in the future forms the assumptive world where a
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stable and predictable future is taken for granted. Within the assumptive world, the
unexpected is not expected.
When cancer enters the family‘s world, the unexpected happens and their
ability to predict the future becomes compromised. The background uncertainty
managed through living within a created assumptive world is thrust into the forefront
by the sudden illumination of the family‘s inability to predict the future. There is no
basis for the family to predict which next step would be best. The family‘s knowledge,
beliefs, expectations, and values all come into question. The natural order and
organization of family life is disrupted, throwing assumed sequences and
relationships out of order.
(Mrs. Smith) Before the cancer arrived, my regular days were so busy and
full of stuff, and we were going here, and going there, and all of a sudden, its
like, no…you don‘t get to do anything now…you‘re not going to work, you‘re
not going to go to ringette, you just need to sit. You don‘t feel well enough to
do anything else. It is like all of a sudden there is a vacuum. And yet our
world was bedlam. The kids still had hockey, volleyball, school, homework…I
can‘t even remember how we got through it, but I know everyone had to help
out big time.
There is no sense of logic, justice, or fairness. The taken for granted world
abruptly disappears. The everyday is no longer the everyday. Every day is a new
day—a frightening, chaotic, unpredictable day and unfortunately, it is all very real.
(Mrs. Wilson) All we have to work with are the facts, you know, it‘s like we
can‘t change what is really going on…we need to understand what this person
is going through…what the actual disease is doing -- that‘s what the reality is,
and we need to know that because when all is said and done we‘re left with
two things, reality and finality. That‘s it. Its real and its final.
Chronic Cancer: It is About the Journey not the Destination
Ralph Waldo Emerson‘s famous quote ―Life is a journey, not a destination,‖
(1855) describes living with incurable but treatable cancer well. All families are
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traveling towards the death of their loved one, but how the family manages their
journey makes all the difference and, if the treatments work, the journey can last a
little longer or be a little more tolerable.
(Mrs. Olsen) So my brother asked me, ―How long is he going to be on the
treatment? And I said, oh, forever. And he looked at me and said what? And I
said well, it‘s treatable, it‘s not curable. He‘ll be taking some sort of pills
forever, for the rest of his life, you know, just like you take a pill for your heart.
As explained in the literature chapter, that advanced cancer can be
successfully controlled for longer amounts of time due to ongoing treatments is a
relatively new reality. New pharmaceutical interventions have allowed the possibility
of chronic cancer to emerge, creating a world where a belief is growing that it may be
possible someday, that a cancer patient may never be post-treatment (Berlinger &
Gusmano, 2011).
(Ms. Brown) When I was first diagnosed, death seemed a lot closer, but now
as I have been able to live longer because of the different treatments I have
taken, I don‘t feel as though death is imminent. I have been sort of dying for
seven years now, but I am still living, so all that stuff that I had to face at the
beginning when I was newly diagnosed doesn‘t seem so near anymore.
Sometimes I feel hopeful that I could live a long time yet, but then I remember
that I have already lived longer than they thought I would…so really, how
much more can I hope for?
Chronic means to have a long duration, as opposed to an acute event, which
refers to a brief, severe experience (Oxford English Dictionary, 2005). The word
chronic can be traced back to the Greek word ―khronos‖ which means time (On-line
Etymology Dictionary, 2013). In Greek mythology, Khronos was the Titan god of
time. He ruled the passage of time and was made king of the island of the blessed,
where heroes were sent to dwell in paradise after their death (Theoi Greek Mythology,
2011). In some versions of this myth, Khronos is also the god of harvest, Father
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Time, and the grim reaper, who comes to harvest the souls of the dying (Novareinna,
n.d.). Through the creation of novel cancer therapies aimed at control, families living
with cancer can gain more time to journey together before they are separated by death.
The difficult reality that cancer cannot be eradicated from their loved one‘s body
means that the remaining segment of their life journey will be completed with cancer
as an unwelcomed companion.
(Mrs. Johnson) It is just always there, you know…We don‘t know when it is
going to get worse…it is obvious that everyone is doing their best to control it,
but I am afraid of the day I will lose him. It helps to hold his hand…that is all
I can do…but still I know the cancer is always there, lurking, just waiting to
overcome the treatments, waiting to take him away from me.
Treatments become the family‘s lifeline. Without ongoing treatments, the cancer will
begin to grow and divide again.
(Mrs. Brown) I‘m on Velcade, Revlimid and Dexamethasone again because
the type of Myeloma that I have is one that does not go into remission -- I‘ll
probably never, ever be able to go off treatment. Like right now we‘re trying
a cycle of Velcade and then we are skipping a month, and then do another
cycle, but I‘m continuing with the Revlimid all the time, and it‘s just holding it
at bay. If I quit treatments then the cancer just jumps ahead. It just starts
moving again, so I‘m one of the types that will always have to stay on some
type of treatment all the time pretty much. So that‘s why we‘re trying to see if
I can skip a month of Velcade, as it would be easier to live with it that way.
In situations where a the disease can be controlled through ongoing treatments,
there are no standard protocols for controlling cancer‘s progression (Berlinger &
Lederman Flamm, 2009). Instead, decision-making needs to be guided by ongoing
quality of life considerations and continual balancing between the interventions
potential to relieve cancer symptoms and the treatments potential to cause toxicities.
(Mr. Anderson) So they put me on chemo that comes in capsules called
Capcitebine. I was on that from the end of June till November 2009. So then in
November they said I could have a ―break‖ from the pills. They had to give
me a break because I developed hand and foot syndrome. That means that my
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hands and feet dry up and then crack open, peel and the skin falls off. And my
feet got so bad this summer, the heels…I couldn‘t even walk on them. And
under my toes…you could pretty much see the bones. So they gave me a break
to let it clear up. I remember my medical oncologist said… ―let‘s give you a
quality of life break for the summer.‖
Advancements in chronic cancer therapies are giving families more time to
journey without affecting the destination. Ensuring that an acceptable level of quality
can be maintained for the family is becoming more and more important. When
cancer was an acute experience, much disruption could be tolerated for short periods,
but as the time that individuals must stay on treatments stretches out, the family is at
further risk of illness and dysfunction (IOM, 2007) and, therefore, efforts to minimize
the disruption caused by cancer and its treatments are becoming more and more
important.
The Emergence of Structure Out of the Chaos
The irreversibility of time is the mechanism that brings order out of chaos.
(Prigogine, 2013)
Prior to the arrival of cancer, and the disruption of everyday life, the family
moved through their everyday routines without attention to their bodies. When daily
life is disrupted by the arrival of cancer, the body itself becomes an unknown territory
that must be relearned. The lack of everyday routines and the shattering of
assumptions about the predictability of the future leave experiences as disjointed and
without meaning. The result is a void that is filled with chaos. To bring order to the
chaos, ―people must redraw their relationships between self, body, environment, and
daily life‖ (Becker, 1999, p. 82), and that takes time.
Learning to navigate by the stars. As families spend time in the unfamiliar
world of chronic cancer, they begin to become familiar with this new world. To be
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familiar with something is to have a sense that it ―bears a ‗family resemblance‘‖
(Jardine, 2006, p. 56). Just as early explorers learned to locate themselves in the
world based on their relation to familiar stars in the sky, the same process is at work
within families who are journeying in the unknown world of chronic cancer.
Navigating in the foreign world begins with recognizing what is familiar. Once
familiarity is recognized, the family can begin to reorient themselves in their new
world.
(Kiesha, Mr. Anderson‘s Granddaughter) So we just have to plan things
better now. When Grandpa has just had his treatments, it is not a good time
to go out camping together. He just tells us straight on…he will say ‗OK
today is a good day, let‘s go fishing‘ or he will say ‗today‘s not such a great
day, so let‘s just snuggle on the couch and watch a movie‘…and you know
what, even just sitting on the couch chatting, or having lunch together is
great…those teeny things can create great big moments.
People still need to eat, sleep is required to function, and mundane tasks such
as grocery shopping and laundry still need to be completed. The family‘s resumption
of daily life revolves around what the ill family member is able to do, and how
physically and emotionally compromised their body is.
(Marie) As we got the dosing figured out on the anti-seizure drugs, Doug
started having seizures less often. For a while, I couldn‘t even go into a
different room for fear Doug would have another seizure and I wouldn‘t hear
him or be there in time to give him the Ativan. We ended up buying a baby
monitor so that I could hear him even if I was in a different room. As the
seizures became less prevalent, I was able to have Doug‘s sister come and sit
with him while I went out for groceries or to do the everyday errands that
needed to be done. Being able to trust that the medications would work made
our lives easier to live.
Becker (1999) asserted that redeveloping a sense that the body would function
predictably offers the family an opportunity to regroup and make the necessary
alterations in their daily life to accommodate the changes. This process takes time.
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In the case of chronic cancer, the functioning of the body directly depends on how
successful the treatments are at controlling the symptoms of the disease itself.
(Mrs. Smith) Somebody told me you don‘t realize how much pain you‘re in
until its gone, and once it was gone, I remember thinking I don‘t know how I
survived that. It was pretty remarkable how my pain settled down and
actually went away once we started the treatments…It was devastating to hear
I had cancer, but that someone was going to help me with this pain was such a
relief. So once I got through that initial insanity, and the first set of treatments,
things kind of went back to normal. We had four teenagers who were playing
hockey, ringette, and swimming. Those things didn‘t change; we just had to
find a way to get what needed to be done, done, while still managing the
cancer.
All of the participating families shared a similar experience of having a
positive response to the treatments that allowed them to re-engage in some aspects of
their everyday life. Ms. Brown spoke of this process of finding a new every day.
(Ms. Brown) Cancer changes you. You‘re not the same person anymore…I
don‘t know if I was a better person before the cancer, or if I have become a
better person since the cancer…people say, don‘t let the cancer define you,
but it is hard not to because you are living a different experience every day
because of it. It defines what your everyday looks like—and even as we‘re
living longer; it still defines how you will experience your life—even if you
don‘t think about it every day. It becomes a part of you. It becomes your new
normal. Whether it‘s normal or not, it is. It‘s part of your life and always will
be and you just know it.
Restoring a sense of normalcy, even if what has become the normal is still not
normal to others, is an important step in re-ordering the family‘s life. Restoring a
sense of continuity for the family does not transport the family back to their precancer world, but rather step by step, experience by experience, the still unknown
world of living with cancer becomes transformed into a more familiar world. The
more effectively the disease is controlled, the more predictable and stable the
unknown world can become.
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Finding a guide. In the hero‘s journey monomyth, the first thing that
happens, once heroes begin their journey, is that they meet a mentor who offers
advice and protection, preparing them for the journey ahead (Campbell, 2008).
Examples of such mythical guides are the helpful crone, or the fairy godmother. All
these entities, regardless of how they appear, represent the protecting power of
destiny. When a family finds themselves thrown into a journey with cancer, finding a
guide who can help them understand and manage their journey becomes of utmost
importance. Connecting with a medical professional who can interpret the symptoms,
diagnose what is wrong, and identify the best treatments possible is fundamental to
getting the disease under control.
Families spoke of how imperative it is that the
oncologist takes time to talk with the patient about the disease itself, to understand
how it is affecting the person who is living with it and their family. It is essential that
they communicate in a way that the family can understand what is being said, and
what it means.
(Jodi, Mrs. Wilson‘s second daughter) We were really lucky…our oncologist
was an easy man to talk to, so when he says something to you, when you don‘t
get it, you can say to him ‗can you back up…can you explain that to me, or
what exactly does this mean, or what does this indicate, and why is it this way
still, while this is changing‘. Every time he answered our questions, he was
patient with us. When he answered it in a way that we could get it, it helped
us so much. We also had to learn to ask good questions, because it was all so
new at first we didn‘t even know how to ask…but if you don‘t ask the right
question, you won‘t get the answer you need.
In the context of cancer as incurable but treatable, the relationship between the
patient, the family and the cancer care team takes on a whole new level of importance.
In contrast to the situation where cancer is experienced as an acute disease, when the
family‘s engagement with the cancer care system is relatively short, in incurable but
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treatable cancer the relationship with the cancer care team is long term, and for some
patients, the healthcare team becomes almost like family.
(Mrs. Brown) I think the relationship between the oncology team and the
patient really has to change because actually your medical team becomes
almost as much a part of your family as your real family. I see my medical
team more than I do my family.
Individuals who are living with incurable but treatable cancer need a trusting,
open relationship with their cancer care team because, at anytime, the impact of the
treatments shift from tolerable to intolerable, and when that happens, the person with
cancer has to be able to share their experience with the cancer care team, be heard,
and feel respected. Mr. Johnson shared an example of how his disease, its treatments,
and the impact on his quality of life guided shared decision-making around his
disease management. Mr. Johnson remembered how his blood counts were climbing
which caused the oncologist to increase the dose of the medications in hopes of
regaining control.
(Mr. Johnson) So the oncologist doubled my dose of Revlimid, and that is
when the pain got so bad…it was never this painful before. And so we had a
serious discussion, and it was me that said…I am not taking this anymore
because it hurts more than I can manage.
When we looked at my blood work…even with the dosage doubled my
numbers were still going up…so I realized I was going through all this pain
for nothing…So right now I am not on anything. The oncologist wants to see if
the neuropathy will settle but unfortunately it is not settling down.
In fact the next time I see him I am going to ask if he can send me to see
someone who can help with the neuropathies and the pain.
People who are living with incurable but treatable cancer want and need a
deeper, more collaborative relationship with their cancer care teams because these
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relationships can span years. The quality and stability of this relationship has a direct
impact on how the cancer journey is experienced.
(Mrs. Brown) We don‘t want just a traditional doctor/patient relationship
anymore because the medical team is a very important part of our lives. In
my case, one of the best things has been the continuity of my medical team,
and having the same nurse and the same doctor for all these years. I know
other people who have had to adjust to a new doctor or nurse on a regular
basis, and then you have to start all over again, telling your story. Telling you
story can get exhausting and it is painful to recall all those things that you
wish were different.
When cancer is experienced as incurable but treatable, ―symptom relief—
either directly or by reducing the disease burden—is the goal of any intervention
under consideration‖ (Berlinger & Lederman Flamm, 2009, p. 18). The goal is more
than just treating the cancer, the goal also includes enhancing the patient and family‘s
ability to understand and live with it.
(Mrs. Olsen) When he first started treatment he got really sick a few times,
and ended up in the hospital. He got pneumonia. His blood count got so low
he needed a transfusion. So the doctor explained to us that they were going to
decrease the dose because his bone marrow was too sensitive. They also
explained to us things we could do at home to help him not to get sick again.
Since then things have gotten better. He is still really tired a lot of the times,
and he can‘t really work anymore, but there are lots of things he can do. We
don‘t really think about it too much anymore…it is just another day, and we
do our best.
Finding a New Normal
Although numerous innovations in cancer treatments have been developed
and the ability to manage cancer as a chronic disease is emerging (Wallis & Park,
2007), it does not mean that living with chronic cancer is easy. Symptoms from the
cancer itself still remain. Every day the disease threatens to mutate and become
resistant to the treatments. Issues ranging from physical symptoms such as pain,
nausea, and fatigue, to emotional effects such as anxiety, depression, and worry are
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constant companions on this journey. When a chronic trajectory can be achieved, the
family‘s new everyday life becomes a juggling act between balancing treatment
regimes, trying to maintain the highest level of wellness by keeping symptoms under
control, and managing the everyday needs of the family. Moody (1999) wrote, ―The
good news is that advances in modern medicine have extended life; the downside is
that it has also extended dying‖ (p. 41). As new chronic cancer therapies do not offer
to change the ultimate destination, just extend the journey, supporting families to find
some type of new everyday will make their journey more tolerable. In this next
chapter, I explore the complexity of the new everyday life of families living with
chronic cancer and make visible the courage, inner strength, and heroic efforts that
families manifest to live the best life they can live given that chronic cancer and
ongoing treatments are their companions.
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Chapter Six: Finding a New Everyday
We…are in part living in a world the constituents of which we can discover,
classify and act upon by rational, scientific deliberately planned methods; but
in part…we are…submerged in a medium that, precisely to the degree to
which we inevitably take it for granted as part of ourselves, we do not and
cannot observe as if from the outside…it is itself too closely interwoven with
all that we are and do to be lifted out of the flow and observed. (Berlin, 1978,
p. 71)
Everyday life is difficult to define because we can never get outside of it, and
what one person experiences as the everyday is different from another‘s. The concept
of everyday life refers to the flow of experiences where one‘s ordinary routines and
activities unfold in a predictable, easy, uninterrupted stream and minimal attention is
required to accomplish the task at hand (Bloch, 2002). Examples might be drinking a
cup of coffee in the morning while reading the paper, or washing the dishes.
Everyday life has a predictable routine which reinforces a sense of continuity and
order (Becker, 1999). Everyday life happens without drawing attention to itself.
Being in the flow is a linguistic metaphor for a process in which action
follows upon action according to an internal logic which seems to need no
conscious intervention on our part. We experience it as a unified flowing
from one moment to the next, in which we feel in control of our actions, in
which there is little distinction between self and environment, between
stimulus and response, or between past, present, and future.
(Csikszemtmihalyi, 1975, p. 43)
Being in the flow depends on the proper functioning of the body. When
bodies function as expected, the physical body can be taken for granted, but when
illness is present, the self becomes aware of having a fallible body (Becker, 1999). In
the case of chronic cancer, the everyday of the past vanishes. The ever-present threat
of death created by cancer generates profound disorder, draws awareness to the
impending loss, and creates chronic uncertainty. ―People who experience the sudden
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onset of a chronic illness face the destruction of life itself, the destruction of the
habituated, embodied self, as well as uncertainty about whether they have time left to
create themselves anew‖ (Becker, 1999, p. 46). For patients and families with
incurable but treatable cancer, that treatment will provide time for their family to
create a new normal and that the everyday will be experienced again becomes goals
in themselves.
(Mrs. Wilson) A fellow that Mr. Wilson used to play hockey with came up to
me one day and asked ‗what makes people keep going? What is it that makes
one keep fighting this disease?‘ And I said, well, I don‘t really know, but I
think a lot of it has to do with hope, having hope, having faith. Because you
think that if you go in and have that stem cell transplant that maybe six
months later you can put on your skates and play a game of hockey again.
And then you think, if I take this nasty drug for a year and a half or however
long it takes to put me in remission, I‘m going to go out there and golf with my
friends again…So I think that‘s part of it because the drugs are there, we are
willing to try them, because it just might be the one that makes a difference…
We are always hoping for a better day.
Everyday Heroism: Being Initiated into the World of Chronic Cancer
True heroism is remarkably sober, very un-dramatic. It is not the urge to
surpass all others at whatever cost, but the urge to serve others at whatever
cost. (Ashe, 2013)
In the hero‘s journey, the purpose of adventure is to overcome insurmountable
challenges and claim the treasure (Campbell, 2008). Campbell identified the part of
the journey in which the hero must survive a series of challenges to prove their worth
as the ―road of trials‖ (p. 81). By moving through sequential challenges, the hero is
initiated into their new world. During this phase of initiation the hero learns many
important lessons about life in this foreign world and discovers inner and outer
strengths he did not know he had. The purpose of the initiation is to teach the hero
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important lessons that will prepare them for the ultimate challenge which usually
involves facing perilous danger.
The initial part of a family‘s journey is an initiation to life with chronic cancer.
The word initiation originated from the Latin word initiationem which meant to
participate in secret rites (On-line Etymology Dictionary, 2013). Challenges and
trials faced when living with chronic cancer are very much like secret rites of passage,
as only those on a similar journey of living with incurable but treatable cancer can
understand, recognize, and have a memory of such events. Learning from each
experience encountered makes the next similar challenge easier to navigate.
Although Campbell‘s schematic for the hero‘s journey (see Figure 1) works
well to describe the structure of an illness journey, however, the sticking point is the
notion of hero (Frank, 1995). Our understanding of what being a hero means has
evolved from mythical stories such as Achilles, Hercules, and Odysseus, where
heroes undertook strange quests, sailed fantastic voyages, killed villains and monsters,
and saved beautiful princesses (Campbell, 2008). Heroes therefore are most
commonly understood as a person displaying distinguished courage, ability, or
strength who is admired for brave deeds and noble qualities (Oxford English
Dictionary, 2005). Ill people and their families do not often define themselves as
heroes. I once asked my sister, Marie if she felt she was a hero, and she adamantly
said ―no‖! She stressed to me that she had not done anything spectacular, but simply
had done what needed to be done. Yet in my eyes she was, and still is, a hero. She
demonstrated through months of daily presence and action during Doug‘s illness her
selflessness and commitment to try and make things better. She let go of things in her
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daily life that would take her away from Doug‘s side. She learned everything she
could about his disease, his symptoms and how to manage them. She acquired new
skills needed to care for Doug including how to give injections, how to do a pivot
transfer, and how to do a bed bath. She learned how to take over the business
responsibilities that Doug no longer could manage. She supported Levi through those
difficult months as he tried to come to grips with the fact his Dad was dying. She
worked to make sure that Doug had opportunities to do the things he wanted to, even
if it took significant efforts on her part. She did all of this in the midst of her own
grief, fear, and sadness.
Allison and Goethals (2011) identified eight character traits that heroes tend to
have which include being strong, smart, resilient, selfless, caring, charismatic, reliable,
and inspiring. Although Marie did not identify herself as a hero, she surely
demonstrated many qualities of heroism.
(Marie) I have had to take on all the tasks he used to do like paying the bills,
doing the yard work, and fixing things while doing all my usual jobs. You
know like doing the laundry, cooking, cleaning, and making sure Levi gets to
school on time, and gets his homework done. Then there was the medical
learning and the application of that learning, like making sure Doug gets all
his medications on time, watching for symptom changes and that he was at all
his appointments on time. I have even learned how to give an injection
because he needs daily blood thinner to prevent more clots. I need to be
strong for him too as we are all a little afraid to look at what is coming down
the road. We have always been people who took our life purpose seriously
and have taken our personal growth seriously. We realized that as a result of
this cancer, we would have to walk that talk in ways we could never have
imagined. Doug and I, from the onset, said, if nothing else comes of this,
perhaps we can at least be good examples to others. It‘s been a long and
winding road just like that old song says. You do it for love.
Frank (1995) argued that it is beneficial if family members see themselves as
heroes in their own stories because it moves them from a passive observe role to
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active change agents. It empowers families to see how their individual actions are
implicated in the journey, and it gives them a frame for understanding their own
personal learning and growth from the experience. However, many times, families
identify the oncologists as the hero of their illness story, as they are the one who
define and initiate the action that results in the disease control.
(Mrs. Brown) I take what my doctor tells me to take. My belief is that when the
scientific stuff doesn‘t work, that‘s when I‘ll go to that alternative stuff
because to me it‘s been the science stuff, the chemo‘s, and the treatments that
have kept me alive, it hasn‘t been the Reiki. I do believe in stuff like that but
for me it‘s the chemo, and the treatments that are responsible for me still
being here. My doctor has been amazing. Without him I would not still be
here.
For the oncologist, slaying the beast of cancer is itself the purpose of their
quest. For them, conquering cancer is the treasure and goal of their actions. However,
in situations where the cancer is incurable, the beast cannot be slayed. Instead, those
journeys revolve around taming the beast, so one can live well. There are numerous
everyday heroic acts required to live well with cancer. Oncologists demonstrate
professional heroism (Farley, 2012), but the person and family with incurable cancer
demonstrate situational heroism. According to Franco and Zimbardo (2006),
situational heroism involves a behavior or action taken on behalf of another person or
a moral cause. They identify that this type of heroism must be voluntary, be done in
the service of others, involve some type of risk (physical, social, or in terms of quality
of life), and be done without expectation of material gain. The arrival of cancer in the
family‘s world demands situational heroism. Chronic illness demands that this
heroism be sustained over an extended time.
(Mrs. Wilson) It was not just about me or him or our kids, it is about our
family, our future, and having more time together. But after a while it got to
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the point where we were not really ourselves anymore. Living with cancer is
like carrying this massive weight that consumes you, wears you out. And it
gets so that its all that you can deal with, even though you really have to deal
with all the other things going on in your world too…sometimes it is
exhausting, but really what other choice do you have? You just have to keep
moving.
What specific heroic acts are taken is not as important as the recognition that
families and individuals with cancer are real heroes in their own journey. Framing
the family‘s journey as a hero‘s journey brings meaning to their action and supports
them in charting their own course. It provides a sense of control in an out of control
world where the rules have all changed. In the remainder of this chapter, the heroic
traits that the families displayed during their initiation into life with chronic cancer
will be explored.
Persevering in the face of death—On being strong and resilient.
There are things that we don‘t want to happen, but have to accept,
things we don‘t want to know, but have to learn,
and people we can‘t live without, but have to let go. (Author Unknown, 2013)
In the journey with incurable cancer, the individual is faced with the
imminence of death, and family members must face the reality that their time together
is limited. In cancer thought to be curable, the fear of dying can be held at bay by the
reassuring words of the cancer care team who hold out the possibility of a cure
through medical interventions or treatments. However, when a family is faced with
living with cancer that is incurable but treatable, the safety net of a possible cure is
not there. When a terminal cancer diagnosis is received, mortality becomes a tangible
concept. Being fully aware of one‘s own mortality is a difficult experience. Yalom
(2009) compared it to staring at the sun, pointing out that you can only stand looking
at the sun for so long, and then you need to look away. This resonates with how
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Doug described his own efforts to cope with his fear of dying, and the suffering that it
invoked.
(Doug) So I hear them. I am not in denial. I know that my cancer is not going
to go away and that I will probably die of it. But I can‘t stay in that awareness
for long. It is too painful. It makes my heart break to think that I won‘t be able
to see my son grow up or love my wife into old age. So I put it away. I hold on
to the hope that somehow, I will make it through…somehow I will live.
Yalom (2009) argued that ―death anxiety is the background music of life‖ (p.
11), and all human beings live in the shadow of the knowledge that life is a process of
growing, blossoming, and inevitably dying. For ages, philosophers have attempted to
theorize how to live a life of harmony and peace in the shadow of mortality. Epicurus,
a Greek philosopher who was born shortly after the death of Plato, proposed that the
goal of philosophy was to alleviate human suffering, and that the root cause of human
suffering was our omnipresent fear of death (Yalom, 2009). Once incurable but
treatable cancer comes into the family‘s world, the fear of death becomes amplified.
It is no longer in the background. It is front and center in the family‘s experience and
this causes suffering.
Mr. Anderson explained how his wife was able to cope with his initial
treatment because they thought they could cure his cancer, but once they became
aware of his disease spread, she has had a much more difficult time coping.
(Mr. Anderson). My wife, she is a basket case. When I was first diagnosed she
was pretty strong through the surgery part, but when we found out that it had
moved into my lungs, that was disturbing…but then when I came home and
told her ―it‘s over…I‘m palliative…the treatment is purely to keep me alive as
long as they can, and I am not going to beat this thing‖…she has never really
recovered from that. She can‘t recover.
I will catch her sobbing at the kitchen sink some days. Not as often as she
used to…she hides it from me now…It is easier for me than it is for her…by
far…Individually I can accept death…that it is coming and that at some point
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it will be over for me. My story will be over. Her…she has to pick up and go
on. She will have to try and pick up the pieces, sort out the financial stuff and
all that and find a way to go on.
How can an individual or family recover from knowing that death is coming?
There is no way to erase the cancer, or change that it is incurable. Recovery has been
defined as to get back or regain something that is lost or has been taken away, to
regain the strength, composure, and balance of oneself, or to regain health after being
sick (Oxford English Dictionary, 2005). It is impossible to regain what has been lost,
because what has been lost is the possibility of a future together without cancer.
(Mr. Anderson) She‘s in mourning, and I‘m not even gone yet. She has
admitted to me that is how she feels. She says she feels guilty about it because
right beside her is the guy she is mourning for, but she can‘t help herself. It is
an interesting way to look at it. She has already started the grieving process
which is good for her in some ways because it helps her deal with things, but
for me, it is difficult because I catch her crying and I want to say ―smarten
up…I am right here…don‘t waste our precious time.‖
Kierkegaard once said, ―the most painful state of being is remembering the
future, particularly the one you‘ll never have‖ (2013). All the families in this study
grappled with the shared and individual losses of their anticipated futures, which
caused pain and suffering. All found some way to be strong.
(Mrs. Johnson) He is so full of life. I know I should not be this way. He is
not lying in bed dying. He does everything he can. He may lay down and rest,
and then I am alone, and I think oh my god, this is what my life will be
like…then I tell myself, don‘t get so emotional…it is not time to mourn now. I
know it is hard on him to see me sad, and he says… ―come on now, don‘t cry‖,
but it comes…I mean from one second to another it is just there. It is my
reality. I have to keep telling myself it is not time to mourn yet. When that
time comes you can, but not now…I know he doesn‘t like to see me sad.
Anticipatory grief is very real, and has been defined as ―a behavioral and
emotional response to the awareness of impending death and the recognition of
associated losses‖ (Lewis & McBride, 2004, p. 45). In the setting of chronic cancer,
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anticipatory grief is complicated further by the fact that the trajectory of dying is not
clearly visible. When the diagnosis is delivered, the idea of death is forefront in the
family‘s mind and throws the family into chaos. If effective treatments are found, the
individual with cancer will improve instead of worsen. If this happens, families are
paradoxically challenged to face death while living with the hope that death can be
delayed. Participants spoke of how hard this simultaneous challenge was. Being
simultaneously aware that their life together would be cut short, while hoping
treatments would control the progression and symptoms for an indefinite amount of
time was a challenge for every single family in this study.
(Mr. Anderson) I know the stop sign has been brought a lot closer than most
people, but I don‘t know how close. We all have a stop sign in our future…like
those poor kids that were killed in that car crash this weekend…that is how
fragile life really is …They are gone. They had no disease, no warning, and
yet they are gone.
So even if my stop sign is a lot closer, it is not in my face. I still can‘t see it,
so…
So it is disturbing when they come in and tell you that your longevity is
greatly reduced…that is not a fun piece of information to play with…because
now you have stirred curiosity. You know there is no way for them to really
answer the question that you want to ask…They can give you averages…they
can tell you about treatments that could buy some time, but they can‘t tell you
how long you have left…
As heroes in their own journeys, families must find a way to persevere in the
face of impending loss and death. Persevere originates from the Latin word
perseverare which meant to continue steadfastly, to persist (On-line Etymology
Dictionary, 2013). This takes the heroic traits of resiliency and strength. Resiliency
originated from the Latin word resili, meaning to spring back or rebound. That the
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disease cannot be eradicated means the only way forward is to accept the uncertainty
of life, to find a way through the chaos, and that takes both inner and outer strength.
Living in the moment--On selflessness and caring. The temporal
dimension to life is illuminated when families are faced with living with chronic
cancer. The span of the family member‘s life, presumed to be until old age is
suddenly a main focus of concern for the family. Cohen (1993) wrote that after the
family‘s assumptive world is ruptured by the arrival of cancer, time is experienced as
discontinuous. The previous taken for granted, everyday world of family life can not
be returned to, and yet future orientated thinking or planning is too frightening
because of the multiple uncertainties that exist. The effect is that families are
virtually tethered to the present moment or very proximate future. The past is gone
and cannot be reclaimed, and the future is uncertain. Families are left to live one day
at a time as this makes the uncertainty of tomorrow more manageable.
(Marie) Sometimes the only way we could maintain our sanity was to not
think any further than that day. What was going to happen tomorrow was too
uncertain. It depended on if the medications worked, if his pain stayed under
control, and if he did not have any more seizures. If things went badly we
could be back in emerg or be admitted or worse... We found that if we stayed
focused on the moment we could handle it. Staying in the moment helped us
to cope and make the most of what we had. We have a poster hanging in our
bathroom and even Levi memorized it and repeated it to us often. ―Live each
present moment completely and the future will take care of itself‖ It became
our mantra. It still is. When I would start to feel overwhelmed about how this
was all going to play out, I just reminded myself to take deep breaths, and put
one foot in front of the other. That really was all any of us could do. We were
on this journey and we could not change it. We could however accept it and
walk together. We talked together, stayed as brave as we could and planned
where to place our next step on the path of life.
Living in the present moment is an effective way of reducing anxiety. Buddha
once said ―the secret of health for both mind and body is not to mourn for the past,
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nor to worry about the future, or to anticipate troubles, but to live in the present
moment wisely and earnestly‖ (Thum, 2013). The experience of living always plays
out in the present moment. The present moment is the only moment where the
temporal dimension of time does not exist. It is the moment where the ―future is
encountered, lived in the present, and transformed into the past‖ (Bub, 2006, p. 32).
By living in the moment, families hold at bay the uncertainty of how much time they
have together. They know for certain that they have that moment.
(Mrs. Wilson) It was a shock, and then you begin to process—like you always
see people‘s hardships and think, oh, man. I don‘t know that I could‘ve
handled that, and then all of a sudden you‘re put into a scenario like that, and
you go step by step…but there are logical steps that need to be taken, doctors
gave us options and schedules that we just followed, and that was helpful. I
think that made things for me a little less emotionally heavy. We just put one
foot in front of the other and followed the steps.
Learning to live in the moment requires families to develop the heroic traits of
being selfless and caring. To be selfless is to be devoted to the welfare or interests of
an-other (On-line Etymology Dictionary, 2013). To care is to be compassionate and
to suffer together (On-line Etymology Dictionary, 2013). It does not take much for
the fabric of everyday life to unravel (Caputo, 1993). Four small words, ―you have
incurable cancer,‖ can unravel it in a moment. Knitting life back together again
begins when one responds to the suffering of someone else, and efforts are made to
minimize and repair the damage, and to restore the rhythm of the ordinary so that joy
can once again be experienced (Caputo, 1993). When witnessing the suffering of a
family member, families are pulled to action by the obligation to try and make things
better. There is no definitive answer for what needs to be done to make things better,
but rather what should be done must be found in the moments when obligation calls,
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when the other is suffering and when compassion and companionship are required
(Caputo, 1993). Responding to these obligations in the moment they arise is an
everyday act of heroism.
Doing what it takes—On being smart and reliable. Managing incurable
but treatable cancer involves continual negotiation between achieving disease control
and maintaining the highest level of wellness possible given the situation. Often
families need to incorporate new skills, activities, and supports to best manage the
realities of what life with incurable but treatable cancer is like for them. Each family
who participated in this study had to incorporate different things, but they all had to
find a way to do what was needed. This required family members to be both reliable
and wise.
Mr. Johnson shared a good example of how his family had incorporated doing
what it takes into their lives. Even though kidney failure can result from Multiple
Myeloma, it is uncommon. Unfortunately in Mr. Johnson‘s case, it became their
reality early on in their disease trajectory.
(Mr. Johnson) When they found out that my Multiple Myeloma had knocked
my kidney function right out we were all shocked. As if having Multiple
Myeloma wasn‘t enough, now I had to face the fact that I had to rely on hemodialysis to survive. I ended up staying in the hospital for 42 days just to get my
creatinine under control…
On top of having cancer treatments to control his Multiply Myeloma, Mr.
Johnson ended up on hemo-dialysis three times a week for two years. Mr. Johnson
had to face the fact that he had two internal processes at work that were life limiting:
kidney failure and Multiple Myeloma which complicated his decision making even
more. Many of the medications used to control Multiple Myeloma are excreted
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through the kidneys, so without regular kidney function, his body could not clear the
medications, and so he was at increased risk of toxicities. With hemo-dialysis, the
blood levels of the medication could be directly controlled, but Mr. Johnson found
being tied to the hemo-dialysis unit so distressing, that he argued with his oncologist
to be switched to peritoneal dialysis so that he could manage his dialysis at home.
(Mr. Johnson) My doctor really argued against me on this one. He said that
we would be able to do a lot more with the Myeloma if I stayed on the hemodialysis. There would be a lot more precise dosage because he knows it would
be all taken out of my system. It would give us markers because on peritoneal
dialysis, there is no way of knowing for sure how much drug is being taken out.
However, even though hemo-dialysis offered medical advantages to the
treatment of his disease, Mr. Johnson argued for a change based on his quality of life,
and he won. He started on peritoneal dialysis in 2009. In peritoneal dialysis an
indwelling catheter is inserted into the peritoneal space so that dialysate fluid can be
instilled, left to dwell for a few hours, and then drained off. Waste products transfer
by osmosis into the dialysate, and are drained out of the body with the cycling of the
dialysis solution (National Institute of Diabetes and Digestive and Kidney Diseases,
2010). In Mr. Johnson‘s situation, this process, which takes about two hours, must be
repeated four times a day. Even though this approach to removing bodily waste is
more labor intensive for him and does not offer as much certainty with his treatment
for Myeloma, Mr. Johnson is very happy with his decision to switch to this type of
dialysis.
(Mrs. Johnson) People think it is horrible for us to do this four times a day,
but it is our daily routine. And sometimes I even have to remind him.
(Mr. Johnson) That‘s true…When she says its ―our‖ daily routine, it really
is…because there will be days like…did you do your dialysis, and I am like
Oh my gosh…I know how long it takes…at minimum the fluid has to be in two
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hours, so I‘ll be ok…I‘ll have to stay up late, but then I can get them done
back to back.
Mr. and Mrs. Johnson have figured out ways to integrate this required activity
into their daily lives in order to maximize their ability to maintain everyday activities
such as travel, gardening, and going out for supper. To them having to do four cycles
a day in their own environment was far better than having to go to the hospital for
eight hours every other day.
(Mr. Johnson) I am pretty flexible. I‘ve been known to do an exchange in the
back seat of the car if we are traveling.
(Mrs. Johnson) Yeah, he will just lay the fluid bag on the front dash of the car
and let the sun heat it up, and then if we stop by a golf course or a gas station,
he can let the old fluid out and hang the new one. It doesn‘t matter where we
are.
(Mr. Johnson) Since we have been switched to this type of twin bag dialysis,
we have been able to travel. We have been to visit my wife‘s dad in Germany
and we are going there in 17 days again. And I still sing in my choir and
travel sometimes with them.
(Mrs. Johnson) He is living life, not living Myeloma.
Managing both the kidney failure and the Multiple Myeloma has become part
of this family‘s everyday experience. In Mr. Johnson‘s perspective, the cancer is
more in the background than the kidney failure because right now the cancer itself is
less intrusive.
(Mr. Johnson) The Myeloma really doesn‘t stop us from what we want to
do…its just there, but the dialysis, we have to deal with that every day. So the
dialysis is almost more important than the Myeloma, as far as having to
manage it. Whatever needs to be done for the Myeloma we have to do, but the
dialysis is an everyday thing.
The diversity in how cancer physically impacts the individual with cancer and
their family is overwhelmingly complex. The disease process at the cellular level can
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be understood, and evidence of its action can be determined, but the chain of events
that the cellular activity set in motion ripples outward through the body and into the
family. Managing this type of constantly evolving situation requires continual
learning, adaptation, and reliable actions. At any point, if Mr. or Mrs. Johnson did
not take the need for routine peritoneal dialysis seriously, Mr. Johnson would become
very ill. Learning how to incorporate whatever it takes into daily life, and
consistently acting on it is everyday heroism in action.
Hope for a better day—On optimism and courage. Hope is powerful.
Emily Dickenson wrote ―hope is a thing with feathers that perches in the soul, and
sings a tune without the words, and never stops—at all‖ (2003). Families with
incurable but treatable cancer hope that the treatments will buy them more time or
control their symptoms so as to lessen their suffering. Having hope allows families to
gain a sense of control even in the face of sustained uncertainty (Hollis, Massey, &
Jevne, 2007; Miller, 2007). Hope was a tangible part of the experience across all
families. What the families hoped for varied across experiences and time.
(Mrs. Olsen) Well, I hope the treatments are going to help…I hope the
treatments will get him into remission or keep it from getting worse…and I
hope he will be around for a long time.
Mrs. Johnson remembered how the physician offered them hope by speculating that
Multiple Myeloma would become a chronic experience due to ongoing treatments.
(Mrs. Johnson) I remember he said…I hope in ten years or so even though it
is not a cancer we can cure, it will be able to be treated. But he didn‘t promise,
he just said we might find something so that people can live with Multiple
Myeloma like diabetes and insulin. That gave us hope.
Mrs. Wilson remembered back to how hope played an important role in Mr. Wilson‘s
ability to manage the reality that he was not getting better.
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(Mrs. Wilson) So I think for him there was always that hope, and maybe that‘s
part of what helped him cope with everything too, even though he couldn‘t do
some things, he had that hope that he was going to get to do it again. Like
golfing and the new Callaway driver he bought…he probably knew that he
wasn‘t ever going to use it, but he still wanted to buy it, to have that reminder
of his hope that he would get better and be able to golf again.
Hope has been defined as a cognitive construct which reflects one‘s
motivation and capacity to strive towards personally relevant goals (Snyder, 1994).
Snyder (1994) proposed that hope depends on the individual‘s perceived ability to
pursue goals despite obstacles (agency), and their ability to generate plausible routes
toward their goals (pathways). Hope is a flexible construct through which individuals
and families are able to productively cope with any outcome (Hollis et al., 2007). As
the disease progresses, what the family hopes for shifts.
(Doug) I heard their estimates about life expectancy. It seemed so strange that
they were talking about my life, and my body coming to an end. At first I held
on to the hope that the treatments would work, and that somehow they were
wrong. I have always had a positive outlook on life and was sure I was going
to be in the 5 % still alive at 5 years. I have always taken such good care of
my health, but the treatments have not worked as well as we all hoped they
would, but I still hold out hope that they will find something that can help me
live longer.
Hope brings us back to the hero‘s journey. In the hero‘s journey, once in the
unknown world, the hero must face their worst fears and overcome significant
challenges. Even though the obstacles seem insurmountable, and the hero must
question their own survival in the face of adversity, something propels the hero
forward. A deep and compelling hope that they will overcome the challenge
motivates the hero to believe that through perseverance, focus, and courage, he or she
will triumph (Campbell, 2008). Just as Snyder (1994) proposed, the hero must be
optimistic that they have the ability to overcome obstacles, and the ability to plot a
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pathway forward. The hero must also possess the courage to keep going, even when
the journey is difficult.
When treatments prove effective in controlling progression or symptoms, a
feeling of hope and optimism is ignited within the individual and their family.
However, treatments also come with a cost. There is a schedule of clinic visits, tests,
scans, as well as untold side effects. Starting on another new treatment always
requires courage and hope, because one does not know if it will work or what kind of
side effects will be experienced. Mr. Anderson shared that his oncologist was
thinking of changing his treatment, and he was already anticipating the side effects
that would come with it.
(Mr. Anderson) They are going to put me on new stuff in the fall…I can‘t even
remember the name but its side effects are that I won‘t be able to handle the
cold…I won‘t be able to handle cold at all...breathing it, putting my hands in
the fridge…he said putting my hands in the fridge will drive me crazy…
In Mr. Johnson‘s situation, the side effect that was most troubling to him was
neuropathies caused by both his dialysis and the therapies controlling his Multiple
Myeloma.
(Mr. Johnson) The neuropathy started with the thalidomide and then with the
Revlimid it has just gotten worse, and now it is my biggest problem. My hands
hurt like they have just been burnt. As if I grabbed something hot and it just
never gets better. And then because I can‘t feel anything but the burning, I
don‘t feel when I am actually hurting my hands (with heat), so I have to be
really careful.
And because my feet don‘t burn, I don‘t realize how bad they are, but I don‘t
feel anything on my feet anymore. I can still walk, but I trip easily and
sometimes I have to shuffle to not trip.
All of this, and yet Mr. Johnson goes on. He continues to take his Revlimid.
He continues to do his dialysis. He continues to hope that something can be found to
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help him deal with his side effects. He continues to hope for a better day. Victor
Frankl, a holocaust survivor, wrote a book called Man‘s Search for Meaning (2008).
In that book he wrote about how hope, courage, and faith in the future were closely
connected to a person‘s will to live. He shared an example of how the death rates in
their concentration camp rose beyond all previous experiences between Christmas
1944 and New Years Day of 1945. The camp doctor did not believe this was because
of harder working conditions, deterioration of food supplies, change of weather, or
new epidemics, but rather because many prisoners had hoped that they would be
home by Christmas, and when that did not happen, they lost hope. The loss of hope
meant the future was hopeless, and many simply gave up their will to live and died.
Neitzsche once said ―he who has a why to live for can bear with almost any how‖
(2013). People need a why to keep journeying. Families spoke of how having more
time together was worth every difficult aspect of how that was achieved.
(Marie) When we were first told that Doug had stage 4 cancer, we hoped and
prayed for more time to be together, to get things in order, and to enjoy
another summer. So we got that. I feel that because we had this time together,
he knows that I am able to take on what I need to. I can‘t imagine what a mess
things would have been if Doug would have died the day he had his first
seizure. I would have been lost. I will always treasure those eleven months
together, because even though dealing with the cancer and its relentless
progression was difficult, we had time together to talk about things, make
some plans for a different future and let each other know how much we were
loved. I was able to ask Doug about how to do certain things that I knew I
would have to do. When he could, he would even show me. He begged me to
let him cut the grass one more time and I knew how much he loved to do those
simple things. It was heartbreaking to know that the everyday joys of our life
together would be gone but with that awareness we were able to make the
most of what we had and somehow we found the courage to carry on. Our
love for each other only deepened.
Constant vigilance—On details and attention. As families strive to find a
new everyday, they quickly learn that managing their chronic illness ―takes constant
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vigilance so that problems can be detected early and corrective action taken‖ (Cohen,
1993, p. 91). The word vigilant originated from the Latin word vigilantia which
meant wakefulness (On-line Etymology Dictionary, 2013). Wakefulness has been
associated with survival. In tribal times, after a big kill had been made, someone had
to stay awake to ensure their food was not stolen. Wakefulness would ensure tribal
families could survive. In similar ways, families living with cancer must be constantly
wakeful to what is going on around them. When the families are new to their journey
with cancer, they can see no pattern to their symptoms or experiences. Chaos is
everywhere. As time passes, the family learns what signifies a problem is coming, or
what indicates that a call to the clinic is required. They develop keen assessment
skills, and through trial and error, formulate a familiarity with how the disease
presents itself, what might be helpful to try, and what they should do. The more
success the family achieves in responding to issues that arise as a result of the cancer
and its treatment, the more comfortable decision making about what should be done
next becomes. Eventually what took a focused effort to be attentive to what each
symptom might mean and what action might be required is replaced by the
development of a sixth sense that enables them to know when something is going
wrong, sometimes even before there are any visible signs to indicate that something is
going sideways.
(Mr. Johnson) When I was first diagnosed, everything was foreign to me. It
took me a while to figure out what I needed to know, what I needed to watch
for. Now I watch my blood counts, and I put them all in a program called
Myeloma Manager. It helps me stay on top of the trends in my blood. I have
learned that if certain proteins start going up I need to be proactive.
Infections really are my weakness now, and that is a challenge because I have
to worry about everyday stuff like colds and the flu. But we have all learned
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to be careful. We bought hand sanitizer and as soon as anyone comes in we
have them use it to clean their hands, and that has really helped.
Families with chronic cancer, who must live life moment by moment, face
many episodes and events that involve worsening symptoms in the course of their
journey with cancer. Some have serious consequences, while others cause only minor
disturbances. To cope with natural fluctuations of chronic illness and minimize the
disruptions, the individual and family must always vigilantly pay attention to the
details of bodily processes (Kleinmann, 1988).
(Marie) Staying on top of the smallest things became so important. Keeping
track of when his last bowel movement was, how much fluid he was drinking,
or what his pain level was became so important. If his pain got out of hand
everything just escalated or if he got constipated he became agitated. So I
became really attuned to his body and what was going on. The quicker I could
anticipate a problem, the less disruption it would have on our day to day life.
Attention must be focused on potential indicators of disease progression or the
emergence of troublesome symptoms, so that appropriate management can be
initiated. This continual attention to details and correlated appropriate responses
occurs on the backdrop of an everyday life filled with a variety of other pressures,
challenges and responsibilities. When constant vigilance becomes second nature and
becomes integrated into the flow of family life, a new everyday can be found.
(Levi) I learned to recognize when Dad was starting to have a seizure. They
always started in his right foot. It would just start to twitch in his foot, and I
would say ―Dad is that a seizure starting?‖ and then I would call for Mom to
come fast. If she could give him his medication right away, then we could
prevent the seizure from moving up his leg. One time we weren‘t with Dad
when his seizure was coming on and by the time we got into the room his
whole body was twitching. That was such a scary time.
As families move through the trials of initiation, they find ways to manage
their journey in the world of chronic cancer. As the family learns things from each
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event or trial, a new memory is formed of this foreign land so that it is no longer as
foreign. As time passes, families become more comfortable in their new reality. They
understand what things mean, and what to do if things happen. Families who are
living with chronic illness become experts at managing their disease and its impact on
their life (Larson, 2009).
Recognizing a New Everyday: On Being Transformed
If treatments for control are successful, and the family is granted enough time
to become familiar with their new world of chronic cancer, the family may once again
find themselves able to experience their days as predictable, orderly, and flowing.
Even though the undercurrent of chronic illness remains, like a volcano silently
waiting to erupt again, the family learns how to go on. A quiet heroism is found by
bravely meeting each problem that is encountered and by adapting everyday life to
incorporate what is required to managing their illness (Kleinmann, 1988). Life is
reorganized. The situation is not hopeless. Family members find strength that they
did not know they had, and the individual with cancer finds themselves supported in a
web of relationships that include family, friends, and their medical team, where a
sense of getting through things together prevails.
(Mrs. Wilson) I think we have come out of this being stronger, because we
had to deal with things that we could not have thought of ourselves dealing
with before. You know it is like when you hear about someone who has a
terrible tragedy and you just think, man, I could never handle that…but you
know what…you now have the life experience to say that you have handled
that, and you could do it…you have no choice…you just have to deal with it,
and that makes you stronger. It has made everyone closer. We were always
and always will be in it together.
On the journey to a new everyday, families often find within themselves
heroic strengths that they did not know they possessed. This can be a treasure from
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this journey, the transformation from oblivious to aware, from assumptive to vigilant,
from distracted to present, from passive to active. Families find they can handle more
than they ever thought possible. Even though they are in a foreign world that is
uncertain and treacherous, they forge new connections that allow for reinterpretation
of past events. The awareness that they do not have forever is real, and they take
comfort in all the yesterdays, but even more importantly they value today and that
they are together for now.
(Mrs. Wilson) People say to me, what did you learn from all of this? And I
say…you know what, I‘m not sure exactly what the lessons were, but I know
that we have all learned something. What I know for sure is that family is so
important. I can‘t imagine what this type of experience is like for people
without a supportive family. That is really what got us through. We all pulled
together and did what we needed to do.
Being Unable to Return: Living with Chronic Illness
The final step in the hero‘s journey is the ―return‖ (Campbell, 2008, p. 167).
This final phase involves going full circle with the hero returning home. As part of
their return, the hero has a responsibility to share stories and experiences with those
who have not been on such a journey. In the case of a family journeying with chronic
illness, even though the disease is under control, and from the outside perspective life
has returned to a more stable, predictable state, families are still unable to return to
their previous world. Although a familiar space has been reclaimed, it is not the
everyday life they had before cancer.
Family members are transformed by their journey with cancer. They tell new
stories about their ventures in the land of chronic cancer, and the heroic acts that it
took to live well there. Realizing that living with chronic cancer will be a part of their
everyday life for as long as their loved one survives drives the need for new
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metaphors to frame their experiences. ―Metaphors lie at the intersection of what has
been and what can be; the use of metaphor thus represents a critical moment in which
the known field of reference is suspended and a new, more comprehensive picture is
invented‖ (Becker, 1999, p. 60). In the next chapter, I offer a synthesis of
interpretation and creation, thereby conceptualizing the mode of travel in the world of
chronic cancer as being limited to either hitchhiking or walking.
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Chapter 7: Is Hitchhiking a Fitting Metaphor for Life with Chronic Cancer?
Metaphors have a way of holding the most truth in the least space.
(Card, 2013)
To hitchhike is defined as ―to travel by standing on the side of the road and
soliciting rides from passing vehicles (Oxford English Dictionary, 2005). As most
people have either seen a hitchhiker or been a hitchhiker, hitchhiking is a familiar
concept and thus useful as a metaphor. Recently, physicians at the MD Anderson
Cancer Centre developed a new model to conceptualize cancer control which they
refer to as the Hitchhiker Model of Cancer Control (Kantarjian, Wolff, & Koller,
2006; Witter & LeBas, 2008). In this model, cancer patients who have incurable but
treatable cancer metaphorically ―hitch‖ a ride on a cancer therapy that offers to
control their cancer. The patient continues to ―ride‖ this drug as long as the drug is
taking the patient in the desired direction, which is either disease control or to
minimize troublesome symptoms. If the drug stops serving the desired purpose, or
because the drugs themselves start causing too many side effects, patients can choose
to get off the drug and wait by the side of the road. If the drugs have become
ineffective, then the patient must wait on the side of the road until another drug that
offers disease control presents itself. If the reason for getting off the drug is because
of escalation of side effects, the hitchhiker may need to take a break from treatment.
After this quality of life break they can get back on the same drug and continue their
journey (Kantarjian et al., 2006).
This new model offers an innovative framework in which families can recontextualize their experience of being dependant on continual treatments to live
longer. Metaphors can help families recreate a sense of continuity, make sense of
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what has happened, and re-order their lives (Becker, 1999). Metaphors ―can provide
a transforming bridge between the image of the old life and the new one‖ (Becker,
1999, p. 60). In my interview with Mrs. Brown, I asked her if she felt that this
metaphor resonated with her experience.
(Mrs. Brown) I can totally relate to the notion of being a hitchhiker and
having to wait at the side of the road until the next treatment comes along.
Every day I have to deal with my fear, and it‘s a big fear, that if these drugs
stop working…will there be another one that can buy me some more time? –
Right now I am on Velcade and Revlimid, but when they quit working, will
there be another one that will work for me? Doctors tell me that there are a
lot of promising treatments that are being worked on -- but they‘re still not
geared towards a cure, they‘re geared towards maybe keeping us alive a few
more months, if you are lucky it will keep you alive for a little longer, maybe
until the next treatment gets developed, but really once you have chronic
cancer, living longer depends on which drug you can hitch a ride on.
Although the hitchhiker metaphor fits the experience in many ways, it also
over-simplifies the experience. In the everyday world, a hitchhiker sets out on their
journey with a specific destination in mind. It is common to see hitchhikers holding
signs that identify exactly where they want to go. The purpose of their journey is
clear; it is to get from point A to point B. In the world of chronic cancer, it is exactly
opposite. Individuals hitchhike to avoid getting to point B. In the chronic cancer
setting, people hitchhike to prolong life and avoid death.
(Janaya, Mr. Wilson‘s daughter) That was the beauty of it. Just when you
thought that the disease was getting the best of him, we would get a glimpse of
our real Dad. The treatments would work, and his symptoms would get a bit
better, and poof there he was. It was so fun when we would get those glimpses.
It was just like he always was before…full of life, sparkle and laughter. That
was the guy we missed, and he was there again. So those were good times,
but that‘s what living with an incurable but treatable disease is like. You
really have to take those moments and cherish them, because unfortunately
they don‘t last forever. Eventually Dad got sicker and sicker. It was so hard
when he died. We just felt robbed. We did not have enough time.
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Another important difference is that, in the real world, if someone is
hitchhiking, it does not mean that they will always be a hitchhiker. The hitchhiker
may very well have a bus ticket in their pocket or a car at home waiting for their next
journey. For the hitchhiker with chronic cancer, they hitchhike for survival, and
although the hitchhiker remembers owning their own car and driving themselves
where they wanted to go, that mode of travel is no longer available. They can
hitchhike or they can walk, that is it.
Another distinction revolves around the most common perception that
hitchhiking is free. This is not the case in the world of chronic cancer, as hitchhiking
carries a steep price. The treatments that control cancer are very costly, and if the
family does not have good health insurance or benefits, the loss of income due to
illness and the increased expenditure on medications can quickly become a significant
stressor for families.
(Mr. Anderson) So if someone had told me 15 years ago… ―when you turn 50
you are going to get cancer and need these benefits that this company that you
are working for now has‖…I would have never gone contracting…In that
alternate reality, I would have effectively retired now…on long term
disability , and then we could have really enjoyed whatever good time we
could find, but I didn‘t stay put and I don‘t have any benefits or long term
disability insurance…so every day I get up and go to work. I struggle with the
fact my contract is coming to an end, and what the hell am I going to do then,
because who wants to hire a tired, sick 50 year old? Sure I could get nongroup blue cross, but really it is not the cost of the drugs that is doing me
in…it is the fact I don‘t have any salary replacement. Some people ask me
how I find the energy to go to work every day, and I say it is my incentive
plan…If I don‘t get up and go to work I have no income.
Exploring the Fit of the Hitchhiker Metaphor
Hitchhiking as an individual. Imagine having your car stolen, and being in
the middle of an inhospitable desert, with the sun beating down, with no water or
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food and no cell phone coverage. To stay where you are is to face certain death. The
only viable option beyond trying to walk to your destination, which really is not that
viable, is to hitch a ride with a passing vehicle and hope for the best. Although the
risks of hitchhiking are many, the risk of not hitchhiking often trumps. This type of
hitchhiking is not glamorous. It is not done in rebellion to the system, as a sign of
teenager resiliency, or as a cheap way to travel but rather it is done out of desperation.
It is a matter of survival. All families in this study had to rely on hitchhiking to live
longer, and to avoid reaching their final destination. All had to learn to rely on cancer
treatments in some way to live longer.
(Mrs. Olsen) The most difficult thing, at first was the big ―C,‖ and having to
tell people about his diagnosis. Of course everyone at work knew we were
going to the doctor, so there was lots of question about how Mr. Olsen was
when I returned to work. And I had to tell them he had cancer, and that it is
incurable. I tried to explain how there were treatments he could take to live
longer, but that they weren‘t going to cure him. That is a difficult thing for
others to get their mind around—that we would always need to be on some
type of treatment to stop the disease from killing him…heck, it was hard for us
to get our mind around...
When someone stops to offer a ride, the first question a hitchhiker will ask is
―what direction are you going?‖. If the car is not going in the right direction, even
though they could hitch a ride, it would not make sense so the opportunity to catch a
ride is not taken, leaving the hitchhiker standing, waiting, hoping for another vehicle
to stop and offer a ride.
(Doug) So the first thing that they did was a bronchoscopy, because that was
the only way to find out exactly what kind of lung cancer I had, so that they
could figure out what treatments would work best against it. We were hoping
that the biopsy would show I had the kind of lung cancer that the newer, more
effective drugs could control, but unfortunately, my cancer did not have the
right markers. The doctor explained to us that even if they gave me that drug,
it would not work, because it targets a specific mutation that my cancer does
not have.
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Even when the driver indicates they are going in the right direction, the
comfort of the ride depends on the type of vehicle in which you are catching a ride.
Some cars have soft seats, air conditioning, and soothing music on the radio, whereas
in another vehicle you may have to ride in the box of the truck, out in the elements.
(Mr. Olsen) I am on Revlimid now, and the only side effect I have is that I get
tired easily. It is so much easier to take this drug than the last one, because
Revlimid is just pills. I don‘t have to go and have an IV put in and have an
infusion like the last drug I was on. That one was tougher to take…sometimes
they could not get the IV, and then when they did the drug would really burn
going in, and then after I was so nauseated. So after that experience, taking
these pills and feeling a little tired seems like a pretty easy ride.
Even if the ride looks like it will not be very comfortable, if there is no other
car around to take a ride from, sometimes you have to take it, even though all
evidence points to the fact that the journey will be fairly uncomfortable.
(Mrs. Smith) I find taking the Dexamethasone is the hardest. The Revlimid
isn‘t really that big of a deal, but the dexs…it makes me wingy. It‘s like…I‘m
on steroids today folks, so be ready to duck. I take my dexs on Thursday night
so that I‘m only a little bit wingy at work on Friday, and then the majority of
the side effects are on the weekend, so that by Monday I am ok again to go to
work. The doctor said that I have to take the Decadron to maximize the effects
of the Revlimid, so I really don‘t have an option there. I just need to plan
around it.
The hitchhiker always has the choice to not hitchhike, to not stick their thumb
up, but in the middle of nowhere with no other means of transportation beyond
walking, choosing to not hitchhike has some serious consequences.
(Mrs. Brown) So I have been on some kind of treatment for a very long time,
because I want to keep living. I am not sure what it will be like when there
isn‘t another drug to take. Maybe by then I will be ready to not take another
kick at the can. Maybe by then I will be ready for what comes next, but I am
not sure. It is a scary thought, kind of like being left naked on the side of the
road. I would be at the mercy of the elements, and I would not survive long.
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Hitchhiking always involves some degree of danger. You cannot be sure if
you will be safe in the car or on the side of the road. Parents lecture their children on
the risks of getting in a car with strangers and give their children tips about how to
remain as safe as possible if one absolutely needs to hitchhike. In much the same
way, patients are always told of the risks of the treatment prior to consenting to have
the treatment, but often it is more so that proactive action can be taken. Even when
the side effects are daunting, the effects of not having the treatment are often worse.
(Marie) I remember sitting in the exam room in the radiation therapy
department, and the doctor was talking to us about the risks of having
radiation to the brain. The side effects sounded horrific. They listed things
like dementia, memory loss, personality changes, hearing damage, headaches,
and nausea. Doug and I were shocked. It sounded so dangerous. But the
doctor told us, that even with the treatment, Doug would probably die before
he experienced the side effects, but without the treatment he would die even
sooner…so given that, we had the treatment.
Being a hitchhiker means not being in control of the vehicle or the roads that
are taken by the driver. At any time, the driver may choose to take a turn that starts to
take the hitchhiker towards that dreaded point B, or down such a bumpy road that the
journey becomes unbearable. Then the hitchhiker must decide if they will get out of
the car. The hitchhiker wonders, maybe the quality of the ride will improve, should I
tough it out? Will another car come along this particular stretch of road? If one does,
will it stop? Will this be the last ride that can be hitched?
(Doug) I don‘t think I can handle another treatment. With every cycle it
seems I am getting weaker, and the side effects are getting worse. At first I
would bounce back really quickly from the treatments, and I would only have
a few bad days, followed by a lot of good days. Now it seems I have lot of bad
days, followed by one or two good days. If this trend continues, soon I won‘t
have any good days. I don‘t think I will have the energy for another treatment.
And I am not sure if there is anything else we can try. All I know is that I am
getting tired and the journey is getting harder.
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Depending on hitchhiking or walking as your only modes of travel is stressful.
Neither mode is completely safe, yet those are the only options to choose from. What
is the best decision? Walking is tiring, and slow, but hitching has risks too. However,
with hitchhiking, the likelihood is that life will be longer. This decision is faced
every time one drug fails and another is offered. Families dread having to face that
decision again. There is no map to plan the journey with. The next turn is always just
out of sight.
(Mr. Johnson) Because the neuropathies are causing me so much grief, my
doctor actually recommended that I take a break from the Revlimid for a
while. So right now I am not taking any treatments, but unfortunately the
burning does not seem to be getting better. I worry about being off treatment
too long because I know that my Myeloma will get worse without the drugs,
but at the same time, I don‘t think I can keep my sanity if this pain gets much
worse. It is really a catch 22. Dammed if you do, dammed if you don‘t. Next
time I see him, I am going to ask for a referral to a pain specialist, but I really
don‘t think going back on treatment right now is the right thing for me, but I
guess we will see.
Traveling as a hitchhiker, even in the most comfortable car is exhausting. The
hitchhiker needs to travel when the opportunity presents. As long as the driver
decides to drive, the hitchhiker rides along.
(Mrs. Smith) If they could do another stem cell transplant…that would be the
only way that I could see myself not being on drugs for the rest of my life
because that is the only thing that can put this disease into remission. But
otherwise I am just going to have to live with it. Some days I think the pills
are going to keep me kicking forever, and that is a good feeling. I don‘t know
if it is true, but I choose to believe it because it is easier to live my life that
way. Sometimes I get so tired of the treatments, side effects, appointments,
schedules…It is exhausting, but what other options do I have. If I don‘t keep
up the pace, if I don‘t stay on these treatments, I know that the disease will
progress and then I might as well kiss my family goodbye.
There is also a stigma attached to being a hitchhiker. Non-hitchhikers look
out of the windows of their comfortable cars as they pass the hitchhiker on the side of
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the road, and wonder why they are hitchhiking. What kind of person chooses to
travel that way? Sometimes the people in the cars do not even notice the hitchhikers
on the roadside. In Mrs. Brown‘s experience, she compared being identified by her
cancer care number on arrival at the cancer clinic the number that concentration camp
prisoners had tattooed on their arm.
(Mrs. Brown) Ever since I got my red card, I have always thought of it
similar to how the Nazi‘s in the Second World War tattooed the Jews in the
concentration camps with a number that identified them…that is what my red
card has been to me. Having cancer and having a cancer number brands you,
and sets you apart. That‘s your number. Everywhere you go, you have to
show that number…show your red card. You become just another number. I
have had to say to people…I am not a number, I am Pat. Call me Pat.
Sometimes the nurses refer to us by the treatments we are having too…like
when they give report…over there is a velcade, or that‘s a rituxan running
over there. That is so degrading. We become known as our numbers, our
cancers or our treatments, but not as the people we are. It takes away our
personage, our humanness.
Just as every hitchhiker on the side of the road has a story but it cannot be
known through the window of a car, so too does each individual and family living
with chronic cancer. They are more than a cancer patient on a specific treatment for
control; they are people with families, with hopes and dreams, with struggles and
challenges who want to be known as the people they are.
Hitchhiking with a family. One time when I was driving, I saw a truck
ahead of me stop to pick up a hitchhiker. As a vehicle slowed, the hitchhiker quickly
motioned to the two little kids who were playing unnoticed in the ditch. All three of
them hurried forward to climb into the vehicle. Witnessing that event made me
profoundly sad. It seemed to me that hitchhiking would be a difficult way to travel
with kids. I passed that vehicle as the small family crawled into the truck cab and I
wondered why they needed to hitchhike, to take such a risk, and I silently hoped they
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would arrive safely at their destination. Individuals with chronic cancer are like that
hitchhiker whose kids were passing time in the ditch; they must bring their families
along when they hitchhike. The effectiveness of the treatment providing the ride
directly impacts family life. The longer and more successfully the treatment controls
the disease, the closer to normalcy the family can get, but when signs of disease
progression/treatment failure begin to appear, the façade of normalcy is shattered, and
families once again are forced to recognize that their time together is dependent on
the drugs that are keeping the disease at bay.
(Janaya, Mrs. Brown‘s Daughter) I worry about Mom‘s disease progressing.
They can tell when her treatments are becoming ineffective because her
proteins start to go up. When I find out that they had to increase her dosage
because her numbers went up, it rattles me. It reminds me how dependant we
are on those drugs to keep her alive. Over the years there have been times
when some of us have gone out there to stay with her when she has had to go
through some treatment changes or was having a rough spot, but I know that
there will come a time when someone is going to have to stay with her more
long term and that will be difficult. Like I have thought about if I will have to
leave my job or what I would do with my own kids.
The family‘s ability to find a new normal in this world of chronic cancer
directly correlates to the effectiveness of the drugs, the prevalence of symptoms and
side effects, and the duration of time that control can be maintained. The threat of
being thrown back into the chaos is never far from the minds of families.
(Mrs. Johnson) This is our daily routine. Dialysis, chemo, neuropathies. But
we have other daily routines. Like we sing in a choir. We love to do that. If
he is feeling well enough we can even travel with the choir to perform.
Sometimes, for a few minutes we can forget that he has incurable cancer and
kidney failure, but only for a few minutes. It seems like we are always waiting
for the other shoe to drop. We don‘t know when it is going to get worse, but
we know it will.
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Being a hitchhiker involves a lot of uncertainties for the whole family. Not
knowing where or how far the ride will take the family, or if there will be another ride
available when this one takes an unwanted turn is an emotionally draining experience.
(Mrs. Olsen) When he first started treatment, he got really sick a few times,
and ended up in the hospital. Then his body reacted too strongly to the
treatment and his hemoglobin dropped, so he needed a transfusion. I
remember thinking…how long does this go on for? Will this get any better or
is this what life is going to be like going forward now?
Hitchhikers and their families do their best to cope with their reliance on
hitchhiking, but it is hard to feel like your family‘s life is normal, if your whole
family is sitting in a ditch waiting to hitch a ride.
(Megan, Mrs. Smith‘s youngest daughter) I remember—everyone tried to keep
my life the same. Like nothing was allowed to change. I had to go to every
ringette practice; I had to go to school every day. People kept asking me if I
was ok all the time but what was I supposed to say…I felt like screaming…MY
MOM HAS CANCER…HOW CAN I BE OK? But I really couldn‘t say that,
so we just floated along, doing every day stuff, life just went on as if it was
normal, but nothing was ever really normal.
When you are hitchhiking with a family, it is not often that the driver of the
car asks how hitchhiking is affecting your family. For the Smith family, their
youngest daughter was so significantly impacted by the journey that, by age 16, she
had tried to kill herself a couple of times with pills.
(Mrs. Smith) Thank God they were able to get my cancer under control and I
am able to live with it, because if I had not made it, I think he (husband)
would have had a hell of a road ahead of him with our youngest daughter. It
has taken the two of us to get her through it…she tried to kill herself a couple
of times when she was 16. She is 21 now, and is just finishing high school. If I
was not here, I am not sure if he would have succeeded in getting her through
on his own. In the long run it would have been so much better to get her help
up front, instead of having her hit rock bottom and then pick her up…but we
just didn‘t realize what we were in the middle of.
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Having to hitchhike is very hard on families. Knowing that there may be no
next ride to hitch is a hard reality to live with. Family members spoke of efforts to
protect each other from the full brunt of how difficult hitchhiking really is for them,
and this went both ways. The individual with cancer protected their families, and the
families protected their loved one with cancer. Even though Mr. Anderson was the
one physically struggling with cancer, the side effects and the treatments, he
acknowledged how he protects his wife from having to experience the full brunt of
his experience.
(Mr. Anderson) Don‘t fool yourself. It is the person with the cancer who is
supporting the family. I have to face the reality of my own cancer every
day…I live it, I feel it, I am changing because of it…but I can tell myself to
stop sniveling, and get on with living. I have gotten used to the fact that this is
the path I am on, and I am doing ok right now. I want to go with that…stay in
the space where I am feeling ok now, so when my family gets down and
depressed that I am sick, then I have to try and somehow get under
them…hold them up.
Mrs. Smith also felt it was her job to keep her family‘s life as normal as
possible, which in her mind meant not giving the cancer any more attention than she
had to.
(Mrs. Smith) Once we got through our first set of treatments, and figured out
how to live with the schedules and side effects, we just tried to go back to
having a normal life…we had a job to do and that was raising our kids. We
didn‘t have time to dwell on how our lives were changing because of the
cancer. We just kind of went on our merry way…when you have little kids,
you just get on with it…I don‘t take anyone when I go up there for my
appointments. I don‘t need any help. I don‘t drag my family up there…is just
not a fun place, so I always thought…why put them through it.
However, the Smith daughters felt that, although they understood Mrs.
Smith‘s drive to protect them from the harsh reality, it actually made their lives
confusing and more complicated than it needed to be.
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(Jessica, Mrs. Smith‘s oldest daughter) I think Mom thinks she is doing us a
favor by keeping everyone in the dark…she goes to all her appointments alone,
she doesn‘t tell anyone what happens at her appointments. She is really
secretive. But we would rather see things coming than be hit broadside with
something. It would be better to know her counts are going up over time,
instead of suddenly just finding out her cancer is back in full force because
her counts are way up. That is not how it works…your counts don‘t just go
suddenly way up, it is a gradual thing, kind of like a warning phase. But if she
doesn‘t tell us we can‘t prepare ourselves.
When the next ride does not come. Every family member journeying
through chronic cancer dreads the day when no more rides can be hitched. As
exhausting as life with ongoing treatments can be, families clearly recognized what
not being on treatments would mean. Even when hitchhiking is going smoothly and
the family has caught a good long ride, they worry about reaching that place in the
future when there are no more rides to be hitched.
(Mrs. Brown) I have thought more about dying than most people because it is
part of my everyday life, you know…I wake up and the death thing is just sort
of there, always just on the periphery, a shadow that can creep in and make
even the most bright and joyous moments sad. I know some day the
treatments will fail, and I will have to leave my family behind, and go on to
another world without them. That makes me profoundly sad. Some days, if I
let myself have a pity party, I could just cry all day at my bad luck to have
gotten incurable cancer, but what good will that do me or my family. Whether
I am sad and dread the end or I focus on the moments and live each day, there
will be the same number of minutes in my life…so I choose to focus on the
moments that I have.
Mrs. Brown‘s words that describe the fear of death as a shadow that is always
there on the periphery waiting to creep in paints a vivid picture. Just as the words
―you have incurable cancer‖ elevate the family‘s awareness of that death is not far
away, the words ―there are no further treatments that we can offer you‖ allows the
shadow of death to move in from the periphery, slowly inching in until every moment
of every day is under the shadow of death. Once it is recognized that hitchhiking is
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no longer an option, the families must face that the disease now has free reign to grow,
invade and destroy, symptoms will worsen, and a return to chaos will ensue.
(Mrs. Wilson) Little did we know what was going on inside his body. Nobody
explained to us that what was going on could be related to his disease
escalating. He could not keep any food down and was throwing up all the time.
They told us he needed laparoscopic surgery to remove a blockage in his gut.
We did not know at that point what a significant moment in his journey this
was. We asked the doctor if this was because of his cancer, but they said they
did not have enough ―evidence‖ to say that. We did get a feeding tube put in,
but really we just did not think that what we were seeing was his body
signaling he could not fight any more. His body was telling us that his cancer
was getting the upper hand. It took us a few more weeks of watching him get
weaker every day till we understood that the end of his journey was near. It
was so sad to watch and not be able to change what was going on.
Walking to their destination. When no further treatments are available, the
family journey in the world of chronic cancer that started the day that they were told
someone in their family had incurable cancer enters its last leg. With their nomadic
hitchhiking days behind them and their destination in sight, the family walks forward
together.
(Marie) Doug was admitted to the cancer hospital in a pain crisis. He was
having seizures again even though he was taking all his medications, and
every day the pain was getting worse, to the point that I could not even get
him out of bed. They gave Doug some more radiation to his brain because the
scan showed his brain tumors were growing again, and they put him on
Dilaudid for pain, but there was nothing else they could do. We went home
with new prescriptions but no follow up appointment. We knew we were on
our own now, and we knew where we were heading.
Families who are told there are no further treatments available realize that
soon another moment will be etched into the family memory, the moment when their
loved one dies. At that moment, another threshold will be crossed, catapulting the
surviving family members into a new journey—a journey to become whole again,
even though they will never be whole again.
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(Mrs. Wilson) I remember one night after Mr. Wilson was already admitted to
the hospital and things were going downhill fast. The kids left the hospital,
and we were alone, and he said to me, ―Am I dying?‖ What do you say when
the love of your life asks you that? I wanted to say to him, ―yes, but we are all
dying.‖ That is how I felt, but that answer would not have addressed his
question, so all I said was ―yes.‖ And I just lay down on that narrow hospital
bed with him and said goodbye to him, and held him. And I think he fell
asleep, but he knew the answer before he asked me. I couldn‘t lie to him. I
laid there and wondered if I did the right thing…did I take away his hope? But
I think I did the right thing. He needed confirmation, he need to know it was
ok. After that we all kept telling him it was ok, that he could go. And I don‘t
know how many times over that five and a half years of living with his cancer,
that I told him he didn‘t need to worry about me, that I would be ok, but he did
until the day he died. I knew he was still worrying about me and the future
even though he couldn‘t say so anymore.
Although I never set out to study this particular phase in the journey, it
seemed unfinished to end this analysis safely in the land of chronic cancer. That
would have been easiest to end on a high note, echoing the cancer care researchers
who would assert that we can win the war on cancer by shifting the definition of
success from cure to control, but in my opinion, that would be to not do this topic
justice. At every step in the journey, unanswerable questions of what will happen
when the treatments fail intertwine with fears about when treatment options will end
plague family members‘ thoughts,. To have not written about this final leg of the
journey would have left those fears unrecognized, unacknowledged, and unspoken.
Living with chronic cancer is not neat and tidy and, ultimately, it does not have a
happy ending. The metaphor of hitchhiking is a fitting metaphor for living with
chronic cancer, but it is not as simple as the doctors at MD Anderson presented it as
in their model. Yes, patients with chronic cancer metaphorically hitch a ride on a
drug to live longer or to live better, but there is so much more to it than that. Families
are forever changed by their hitchhiking experiences, and someday each family will
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face the reality that another ride is not coming to pick them up. The reality that the
journey with chronic cancer is still a journey that culminates in death is a painful
reality, but not speaking of where the journey is heading does a disservice to the
families who are trying so hard to live well in the face of incurable but treatable
cancer.
(Mr. Johnson) Like for me it is a slow process right now. I am on a train
going somewhere, but it is not moving very fast. But no one will talk to me
about where I am headed, about what it will be like when the symptoms
progress, or when that might happen. And I wonder, am I going to feel
pain…and they say, oh we don‘t need to talk about that now…and I am
like…well when are we going to talk about it, when I am hurting? That is the
hardest part, knowing it‘s coming, but not being able to be prepared.
Facing Chronic Cancer’s Difficult Realities
Throughout this research I have been guided by the question ―how might we
understand the experiences of families living with incurable but treatable cancer in
their midst?‖ What I have learned is that no matter how effectively the disease can
be controlled, the fact that treatments cannot offer a cure means the families‘ journeys
will continue until the cancer claims its dominance and their loved one dies, or until
their loved one dies of something else. All cancer cells have a single-minded quest to
be immortal. Cancer cells are not concerned with contributing to the wellbeing of the
body. Rather, the cancer cells become ―survival specialists, at the expense of the
organs and body in which they originate‖ (Healy, 2007, p. 36) and, if left unchecked,
will proliferate until all of the body‘s energy is consumed by supporting the growing
cancer, until there is not enough energy left over to sustain life. Cancer cells will
mutate and become resistant to treatments in order to survive. This is unfortunately a
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given. Chronic cancer treatments are initiated with the caveat that you can stay on
them until they no longer work.
Writing about what happens beyond achieving cancer control goes against the
dominant discourse. It is much more comfortable to marvel at modern medicine‘s
incredible genius that has made the possibility of cancer control a reality than to
contemplate the converse, that ultimately efforts to cure advanced cancer have failed.
People will continue to die of cancer. In fact, the ability to control cancer through
ongoing treatments is actually increasing the complexity of the journey for families,
the cost of providing cancer care, and the burden of cancer in our society. In the next
chapter I offer the cumulative interpretation that life with incurable but treatable
cancer is like being stuck in limbo, and realizing the only options for transportation
are hitchhiking or walking.
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Chapter Eight: Striving to Live Well in Limbo
The chronically ill often are like those trapped at a frontier, wondering
confused in a poorly known boarder area, waiting desperately to return to
their native land…To pass through this world of limbo is to move through a
‗nervous‘ system, a realm of menacing uncertainty. (Kleinmann, 1988, p.
181)
In the hero‘s journey monomyth, the final phase of the journey is the hero‘s
return and reintegration into society (Campbell, 2008). Campbell described the
returning hero as a master of both worlds, because they have conquered their own
fears on the quest and have accumulated numerous learning‘s from their experiences.
As a result of those experiences and new-found familiarity with the unknown world,
the hero is able to pass between these worlds with ease. As discussed in previous
chapters, the hero‘s journey for families living with incurable but treatable cancer
differs from this monomythic structure as they are unable to cross the threshold back
into a world where cancer treatments and the constant fear of disease progression are
not part of everyday life. Total reintegration into society is blocked. However, with
the advent of effective cancer control treatments, and improved symptom
management interventions, more and more families are finding that given enough
time, they can heroically reclaim a new type of everyday life even within the foreign
world of chronic cancer. In this way, families work to master life in limbo and regain
the highest level of wellness that is possible given their realities.
Living in Limbo
Limbo has been defined as an intermediate, transitional, or midway state or
place (Oxford English Dictionary, 2005) and has been used since medieval times.
The original Latin meaning of limbo was in reference to a region that existed on the
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border of hell where un-baptized innocents who died were sent, where they were
neither dammed nor saved but merely existed (On-line Etymology Dictionary, 2013).
In modern English, limbo figuratively refers to a state of non-resolution or
uncertainty (Oxford English Dictionary, 2005) Someone who is described as being in
limbo is someone who is suspended between stages of life, and is neither this nor that
(Palmer, 2001).
Living with incurable but treatable cancer is to be suspended in limbo, no
longer in the realm of curable, but yet not actively dying. The word liminality has
been used to describe the state of being that is experienced by a person in limbo, as
they pass over the threshold from one stage of life but have not yet arrived at the next
(Turner, 1974). Liminality captures the in-between nature of life with chronic cancer.
Families in this liminal space must manage living with the knowledge that their
cancer will never be cured, while recognizing they are not currently dying of it either.
Families must meet the regular demands of everyday life, and yet their usual
approach to everyday life no longer works. Individuals with chronic cancer are not
fully well, and yet are not fully sick. Liminal phenomenon such as chronic cancer
blur boundaries, upset classification schema, foster ambiguity, and have an affinity
for chaos, transition, and instability (Hansen, 2005).
Etymologically, the word liminality links back to the Latin word limen which
means threshold (On-line Etymology Dictionary, 2013) and through a common root is
related to the word limit, which refers to boundaries (Oxford English Dictionary,
2005). The world of chronic cancer has rigid boundaries that must be crossed to enter
and leave. Just as in the hero‘s journey, the family‘s journey through the world of
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chronic cancer begins when the threshold is crossed and a family member is told they
have incurable cancer. The family‘s ability to exit the world of chronic cancer is
bound to the death of their loved one, and the amount of time they have to spend in
this land is dependent on the type of cancer, the treatments that are available, what
can be afforded, and how effective the treatments are.
Living in limbo is not easy. Chronic cancer interrupts the family‘s life
midstream and demands that everyday life be reorganized. Families must
simultaneously contemplate the end of their lives together, while hoping for, and
taking actions to live longer. Families must incorporate ongoing cancer therapies and
side effects, manage new financial stressors, and learn to live with perpetual
uncertainty as to how long the treatments will work and how long life can be
extended. Plans for the future must be changed. Families struggle with the reality
that no matter how effectively their disease is controlled, or how well they adapts to
everyday life with cancer, it could all change in an instant. At any moment, the
disease could mutate, rendering the treatments ineffective which would plunge the
family back into the chaos of uncontrolled disease progression. The incurable nature
of their cancer coupled with its treatability tethers them to the world of chronicity, a
poorly understood domain between normalcy and chaos that is vaguely familiar and
yet foreign and unpredictable. It is not the everyday world, and yet, strangely it is.
This is a world of limbo.
(Jodi Wilson…daughter) It is kind of like you have to put your life on hold
when you find out that someone in your family has incurable cancer. Like last
summer or fall there were a couple of things that my husband and I had talked
about doing, and we didn‘t do them because I didn‘t want to leave. I just
couldn‘t go away because I was scared that Dad would die while I was gone.
It was just easier to put everything that could be done later on hold, it did not
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matter if it was buying a new pair of shoes or going on a holiday. We really
didn‘t live our normal life again until after Dad was gone. It was like all those
years he was sick we were all in limbo.
Understanding life in limbo. For families living in limbo, the journey
through chronic cancer is itself a process of coming to understand the world they find
themselves in. As families face experiences that they have never faced before, a
process of learning is initiated. Gadamer (1989) wrote that experiences that differ
from the familiar are particularly productive and contribute to the development of
comprehensive knowledge. Gadamer went on to explain that the word experience
can be used in two different senses: ―the experiences that conform to our expectation
and confirm it and the new experiences that occur to us‖ (p. 347). In the world of
chronic cancer, families are continually exposed to new experiences that have not
been encountered before. As families recognize the experience as different from
previous life experiences, exploration of what is familiar in it and what is not allows
for understanding to emerge.
A fundamental way that families share the knowledge gained by journeying
through the world of chronic cancer is by sharing their stories of those experiences
with others. In the monomythic structure of the hero‘s journey, Campbell (2008)
identified that, upon the hero‘s return to the ordinary world, the hero has a
responsibility to share the learnings gleaned from their journey with those who did
not experience the journey themselves. Once again, parallels can be seen within the
family journey. Although they are unable to return to their ordinary life, families
share their learnings whenever they tell their story to others. Kearney (2000) argued
that it is through the telling of stories that a sharable world emerges. It is in the
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formulation of the family‘s story that a reflective space is gained, where fragmented
moments and experiences can be transformed into patterns, trajectories, and linked
events. Being able to transform singular events intellectually into some type of linked
unfolding is essential to restore a sense of continuity to the family‘s life (Becker,
1999).
Frank (1995) identified two types of stories that are told by families in the
liminal world of incurable disease: chaos stories and quest stories. Chaos stories tell
of cancers that are out of control, of families who have been swept along by
uncontrolled evolution and progression of the disease. Chaos stories illuminate the
ultimate vulnerability of humanity and demonstrate how easily any of us could be
sucked under, making chaos stories the most uncomfortable stories to listen to.
Unfortunately, some families with incurable cancer can never tell anything but chaos
stories. Their situation just keeps getting worse, things happen faster than can be
dealt with, and families cannot gain any space to reflect back on their experience.
They are simply consumed by the chaos of disease progression, escalation of
symptoms, and continual loss. Caputo (1993) referred to this type of chaos as a
disaster. ―A disaster…is a matter of being cut off from the star that protects us from
misfortune…a matter of running out of luck…disaster is something that reaches us,
that is visited upon us‖ (pp. 27-28). Families who experience a diagnosis of incurable
cancer experience a loss that is beyond repair, but treatments that can control the
cancer‘s progression offer the possibility that the family can rise above the chaos,
where some degree of familiar everyday life can be reclaimed. Treatments for control
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open the possibility that joy can once again be experienced by the family even in the
context of incurable illness.
(Mr. Johnson) So as I started to feel better once the treatments started to work,
we decided to try and enjoy whatever time I had left…we bought a holiday
trailer and we go with the kids and grandkids when I feel well enough. We
really enjoy our time together. Maybe the trailer and the camping is
expensive, but you can‘t really put a value on family time…can you? We are
having some fun again, and that is amazing, considering what is hanging over
all of our heads, that someday this disease is going to end my life, and they
will all have to go on without me.
Families who do not find ways to rise up out of the chaos have a difficult time
telling their story because stories cannot be formulated from within the chaos; there is
no organization to events; there is no visible storyline. It is only after the chaos has
subsided that perspective can be gained, making some degree of narrative ordering of
the family experience possible. Only then, can the family‘s voice be found (Frank,
1995). Unfortunately, the voices of families who never made it out of the chaos are
not heard in this research. Families who are stuck in chaos lose their ability to say
―‗that happens,‘ ‗such things happen,‘ and instead they succumb to what happens,
[and] are destroyed by it‖ (Caputo, 1993, p. 241). Kearney (2000) asserted that life
can only be understood by being retold through stories which requires a reflective gap
to be created between living and recounting. Families who never find their way out
of the chaos call to us as inarticulate cries in the night; their suffering is palpable, but
their individual stories remain untold (Caputo, 1993).
Quest stories (Frank, 1995) are told by families who are able to rise above the
chaos of incurable disease, who have accepted their illness and seek to learn from it.
Treatments that control disease progression provide structure which allows the family
to rise above the chaos and find space for reflection. However, not all families who
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rise out of the chaos step into that reflective space. Some families chose to stay
firmly focused on the attainment of a new everyday and its resemblance to the
ordinary world. They work hard to ignore the cancer lurking below the surface of
their life, and give little energy to reflecting on the meaning of their experiences.
(Mrs. Smith) Once we got the disease under control, we just kind of went back
to the insanity of our life with four kids…when you have kids you just have to
get on with it. We put cancer and its treatment on the back burner. We did
everything we could to get back to normal. We didn‘t talk about the cancer
anymore. I just took my meds and did my appointments, and tried to ignore it.
There is no right or wrong way of coping with chronic cancer, and each
family must figure out what approach will work best for their family. However,
participants in this study did recognize that the more effectively the treatments
controlled the disease and the more time the family has in the chronic realm, the more
effectively families could keep thoughts of their incurable cancer and what comes
next from percolating to the surface.
(Mrs. Brown) When I was first diagnosed, death seemed a lot closer, but now
as I am living longer thanks to the treatments, well I am kind of taking life for
granted again. I did my personal directive and my will right away when I
found out I had incurable cancer. I looked after all that stuff, like planning
my funeral, pre-purchasing my casket…I guess I still have a few things to tie
up, they just don‘t seem as important to me now because I don‘t feel like death
is imminent. I have been dying for seven years now, but I‘m still living so all
that stuff just doesn‘t seem as near anymore. Slowly, more everyday stuff
creeps into life again, and it is so much easier to just think about everyday
stuff than the doom and gloom of how this journey will end.
Families with chronic cancer who find they are living a new normal have
discovered a way to live as comfortably as possible in the space between restitution
and chaos. They have come to terms with being neither curable, nor actively dying,
and have mastered life in limbo. No one can remove them from the situation they
find themselves in. No one can suffer in his or her place. Each individual must
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accept his or her fate. It is their own singular task. The unique opportunity for each
family member lies in how he or she bears the burden (Frankl, 2006). Frankl
recounted a similar learning gleaned from his years as a concentration camp prisoner.
―It did not really matter what we had expected from life, but rather what life expected
from us‖ (p. 77). Getting his fellow prisoners to realize that life was still expecting
something of them was pivotal to finding meaning in their life, even amidst great
suffering. Participants shared similar learnings as they realized that a terminal
disease did not mean they did not have any future, they just did not have the one they
thought they would have.
(Mrs. Olsen) We had to come to terms with his cancer. It was real, and it was
not going to go away. We had to let go of our plans for going to Arizona with
our friends, and instead we had to go for cancer treatments. We had to tell
everyone he had cancer and that it was not curable, but at least it was
treatable. We have learned how to live with all of this…we have not let the
cancer be the center of our lives…ok we both know it is there, but as much as
we can; we still go places and do things. It hasn‘t become our focus, which is
the big thing. Instead we just focus on what we can do today, how can we
enjoy a little bit of life today? If you just focus on the cancer your whole life
collapses.
Keeping illness in the background. Restoration of the predictability of the
body with cancer is key to the family‘s ability to live well with chronic cancer. As
everyday life depends on the ability to take the body and its functioning for granted,
controlling the disease, and restoring stability to the body is an essential ingredient to
mastering life in limbo (Becker, 1999). The more effective treatments to control the
disease are, the more effectively patients and their families can keep the illness in the
background. The longer the disease is under control, the more hopeful the family
becomes that maybe it will always stay in the background. However, fear always
remains just below the surface that at any time the disease could mutate, a critical
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event could occur, and the predictability of the body would evaporate once again.
The family fears finding themselves back in the chaos of uncontrolled disease
progression and escalation of symptoms.
(Doug) Life is ok right now. I even went out golfing with Levi. I may not have
done the long drives like I used to, but I was out there with my son. We took a
golf cart and it was a great couple of hours…but I know things are changing
in my body. I can feel the pain getting worse every day. It is getting harder to
get out of bed. I am so afraid that may have been my last golf game.
Patterson (2001) developed a model that is referred to as the ―Shifting
Perspectives Model of Chronic Illness‖ (p. 23) that captures the constant shifting of
awareness that families living with chronic illness experience. This model is built on
the premise that people with chronic disease live in ―dual kingdoms of the well and
the sick‖ (Donnelly, 1993, p. 6). Their perspectives can be conceptualized as
occurring anywhere across a continuum between ―illness in the foreground‖ and
―wellness in the foreground‖ (Patterson, 2001, p. 23). How well or ill the individuals
perceive themselves as is constantly being determined by their own comparison of
their current experience to what they know and understand about being either well or
ill. Paterson stated that the physical realities experienced by the individual are less
significant than the individual‘s perceptions of whether they are well or ill.
Participants in this research reinforced this by sharing their experiences of being well,
and having an everyday life even though they were experiencing significant side
effects from the progression of their disease or from the accumulated effects of their
treatments.
(Mrs. Smith) Physically, I have not had that many problems. I have actually
fallen a couple of times, and surprisingly I have not broken anything. I trip
occasionally because I don‘t feel most of my feet anymore. If I run my fingers
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across the tops of my toes I can‘t feel that at all anymore. I don‘t think that
will every come back…but if that is the worst it ever gets, that‘s not too bad.
The paradox of living with cancer as a chronic disease is that in order to be
able to have wellness in the foreground, the disease must be controlled, and in order
for the disease to be controlled, the daily management of the disease must be
forefront. The disease requires attention in order not to have to pay attention to it.
The way an illness unfolds, and the family‘s ability to tap into their everyday heroism
to meet the daily challenges of integrating the illness and its management into daily
life dramatically impacts how successful families will be at finding a new normal
(Becker, 1999). Cancers that change and mutate unpredictably, require frequent
medical interventions, and numerous different treatments will be experienced by
families very differently than advanced cancers that are more stable, responsive to
treatment, and are characterized by gradual, continuous decline. The whole family‘s
ability to find a new everyday depends on the degree that treatments can control
progression and symptoms. Chronic cancer patients and their families are doing more
than simply passing through a liminal space between phases in life, they must learn to
live there and call it home.
As treatments work and the body function becomes more reliable and
predictable, order in daily life can begin to resurface and a new everyday can take
shape (Becker, 1999). Small successes fuel the hope that larger successes will follow,
that the disease will be controlled and that the family will have more time together.
The ability to engage in day-to-day activities inspires hope within the family and
fosters the inner strength and resilience to persevere. ―The repetition of events of
everyday life give structure and logic to people‘s lives‖ (Becker, 1999, p. 152), and
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therefore it is the ability to re-claim everyday life within the context of incurable
cancer that defines the chronic cancer journey.
Defining a single new normal within chronic cancer is not possible, because
each family will find their own new normal. Rather, it is more important that the
family finds their own path to a new everyday, where life can once again be perceived
as flowing without too much attention. When the routines of family life can be in the
forefront, and the disease management becomes just another thing that families
incorporate into their list of things to do in a day, a week, or a month, then families
have learned to master life in limbo.
Living in Limbo as Success
That cancer can be experienced as a chronic disease reflects significant
advances made in oncologic therapeutics over the last two decades that have enabled
many patients with incurable cancer to live longer than ever before (Berlinger &
Lederman Flamm, 2009). It is becoming increasingly common to hear cancer being
referred to as a chronic disease similar to diabetes or high blood pressure (Witter &
LeBas, 2007; Wallis & Park, 2007). However, cancers differ from other chronic
diseases in their innate ability to adapt, mutate, and become resistant to treatment
(Berlinger & Lederman Flamm, 2009; Mukherjee, 2010). The psychological burden
experienced by chronic cancer patients is compounded by the genetic adaptability of
cancer. Uncertainties around if their disease will respond to the treatment regimens,
if it does, how long it will work, and when it no longer works, will there be another
option for control available are irreducible. That a chronic cancer patient anticipates
when their treatments will become ineffective reveals a fundamental difference
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between this population and people living with other chronic diseases such as high
blood pressure, or diabetes. The reality that even in a chronic state cancer mutates,
spreads, and invades sets chronic cancer apart.
(Mrs. Wilson) Sometimes it is so frustrating, because you really are not
getting anywhere with all the treatments and tests, really the best you can
hope for is that the disease just doesn‘t progress. And then when the disease
does progress, you feel like…holy cow, why is this happening. We‘ve been
doing everything just like they told us to...we are taking the drugs, we have
done all the treatments, whatever they said, we did, and still we are getting
worse. Then you kind of start beating yourself up, because it must be because
we just are not doing something right that must be why the disease just keeps
getting worse. You ask yourself, what more should I be doing to make this
better…and that is impossible to answer.
Being able to control cancer represents significant progress and success, but
what kind of success? Defining the achievement of control over progression as a
success has offered a more socially acceptable, hopeful way of speaking of medical
advancements that have failed to offer a cure. The language of success highlights the
great strides achieved, fuels the hope that such amazing discoveries will continue to
evolve, and protects the belief that with more time and effort a cure can be found.
(Mrs. Smith) Cancer patients used to die. Well we don‘t anymore…instead
we are going in there [cancer centre] every four weeks for treatment, for
blood work, or for doctor‘s appointments for years. I have been doing that for
eleven years…and I know that these drugs have not cured me, but they have
kept me alive…and if they keep me alive long enough maybe a medical
breakthrough will happen and they will figure out how to cure this damn
disease. Every time I hear about a new drug that is showing promise, I
think…here we go…maybe this is the one that will cure this.
Redefining cancer control as success is comforting because it deflects
attention from the incurable nature of the disease by keeping the focus firmly on the
treatments, thereby minimizing the need to focus on anything that lies beyond. It
aligns with the Western cultural preference for stories that follow a predictable linear
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path from crisis through chaos to a gradual resumption of a normalcy (Becker, 1999).
However, ultimately drugs that control cancer‘s progression still fail to cure or to
control cancer indefinitely. These treatments fail to remove all traces of cancer from
the body, to allow individuals to return to a live without cancer. So is control a
success? Etymologically, the root of the word success lies in the old Latin word
successus, which meant to achieve a happy outcome (On-line Etymology Dictionary,
2013), but is living with chronic cancer a happy outcome?
There is no disputing the fact that cancer control represents significant
progress, and that it is a happier outcome while control is maintained than facing
uncontrolled disease progression. However, defining control as the single indicator
of success in chronic cancer treatment oversimplifies the complexity of this
experience. If achieving control is the only requirement for success, then the
families‘ struggles around perseverance in the face of sustained uncertainty, coping
with the continual risk of disease progression and treatment failure, and the
exhaustion that accompanies the required sustained efforts required to maintain their
new normal all become invisible.
(Mrs. Brown) I think people just look at us and if we look good, and our
treatments are working, we should be okay, everyone can just go on with stuff
in their lives. People just look at us and think that we must be getting along
pretty fine. We are not in the major throws of dying. But you know you get
tired of the treatments, you get tired of the schedules, you get tired of the side
effects, you get tired of thinking about what might happen to you when the
disease gets worse, but yet you can‘t say that to anybody, because you know
what the comeback will be…well you should be grateful that you are still
alive…you should be happy that you‘re still here.
Mukherjee (2010) wrote that if we focus on prolonging life rather than
eliminating death, victory over cancer is within our grasp. There is no doubt that new
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medical interventions are creating the possibility of prolonging life with incurable
cancer, and represent some degree of success. Mrs. Smith‘s experience is a perfect
example. She is 11 years out after a terminal diagnosis due to ongoing treatments for
control. When she was diagnosed, she was given a three year prognosis. In many
ways the medical control of Mrs. Smith‘s cancer is a huge success, but it is not the
end of her journey with chronic cancer. At the time of our interview, her most recent
series of blood tests had identified a slow escalation of proteins, indicating the drugs
which had been controlling her Multiple Myeloma for so long were beginning to fail.
If they did, would Mrs. Smith be able to hitch a ride on another drug for control?
Would her disease escalate and become uncontrollable? Will she suffer? Has she
died? How is her family coping? Defining control as success keeps the fact that the
family‘s journey with chronic cancer will not ultimately end happily quietly in the
shadows.
Families value the medical advancements that are allowing them to live longer
but achieving chronic control is not the end of their story, nor is it a completely happy
outcome. Rather, it represents a new chapter in their journey where they are in limbo.
They are no longer guided blindly by the hope for a cure, but are not yet facing death
head on.
(Marie) That space in time when we were taking treatments to control Doug‘s
cancer‘s progression, but we were also aware that he was slowly getting
weaker was bitter sweet. We knew our time together was growing short, but
yet we were still together. At the end of the day we both drew comfort from
the fact that we could still lie in bed beside each other, but we both silently
dreaded the day when the bed would only cradle one of us.
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Limbo’s Transformative Ability
Stories shared in this research revolved around accepting that medical
interventions could not offer a return to normalcy, but could hold the chaos of
uncontrolled disease progression at bay. These stories included the acceptance of
illness, and the notion that something was gained through the experience. The stories
told by the participants in this research fit the description of quest stories established
by Frank (1995). Just as in the hero‘s journey monomyth, where the purpose of the
journey is about finding ―the ultimate boon‖ (Campbell, 2008, p. 148) or insight and
sharing that with others, being able to tell a quest story revolves around being able to
reflectively see some type of inner transformation that occurred over the course of the
journey. For the Wilson family, they recall how the challenges that chronic cancer
brought to their family made them stronger.
(Jodi Wilson, daughter) I think we have come out of this being stronger,
because we have had to deal with things that we could not have even thought
ourselves to have been able to deal with before…it is like when you hear
about someone who has had a terrible tragedy and you think….oh man I could
never handle that, but now we know that we did. We have had the life
experience and now we know that we can. Really you have no choice, you just
have to deal with it, and when you do it makes you stronger, and it pulled us
together.
In the Brown family, Mrs. Brown‘s daughter shared how she thought that
living with chronic cancer had made her mom a better person.
(Sarah, Mrs. Brown‘s daughter) Without this cancer experience, I am pretty
sure my mom would not be the person she is now. Obviously she would still
be the ―same‖ person, but she has really made the best of the cards she has
been dealt. She enjoys what she can. She has done so much more with her
life, and experienced so much more since being diagnosed with cancer that
she would not have before that. It has almost made it easier for us to accept it
all, because she has been able to do so many great things because she has this
cancer. She started the first Myeloma support group in this city, she has been
able to talk at conferences, and talk to others who are struggling with the
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same disease. I think the cancer offered her an opportunity to be someone
who makes a difference for others.
Frankl (2006) asserted that ―man‘s search for meaning is the primary
motivation in his life‖ (p. 99), and that each individual‘s meaning is unique and
specific. There is no broad singular thing that gives meaning to life, but rather each
individual must find their own meaning, their own why, which in turn will give them
strength to bear the how of what is required to live (Frankl, 2006). Across all
participants in this research the why of their struggle was founded in their love for
each other. Family members, both healthy and sick, were motivated to take action in
order to minimize the suffering of the other. Two elements became key to
minimizing the suffering of others in the family, one was gaining more time to
journey together, and the other was minimizing the impact that cancer had on the
everyday, so that joy could once again be found in their moments together.
(Mrs. Wilson) I remember the day that we saw the doctor and he said the
results from the first transplant had not gone as well as he had hoped, and
that we would need to have a second transplant. Mr. Wilson just looked at me
and said… ―I am not going to do it…there is no way‖. That is all he said.
When we got out to the car I was fuming mad. I said to him… ―you realize
that if you don‘t do a second transplant, that is it. They won‘t offer to do it a
year or two down the road. It is now or it is not done…This is not just your
choice anymore. It is about our life, our family, our future. I was very angry
with him. Later that night he told me he changed his mind and he would have
the second transplant.
Mr. Wilson knew firsthand the extreme physical toll that undergoing another
transplant would demand from him, and yet he agreed, because having the transplant
offered more hope that they could have more time together than not having the
treatment. Agreeing to a second transplant, after already living through one,
demonstrated Mr. Wilson‘s commitment to try to gain more time together, even if the
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price was high. Similarly, family members also demonstrated their commitment to
put their family or loved one first. The selflessness of all involved was remarkable.
Everyday heroism abounded.
On Being Transformed
I know that I have been transformed by conducting this research and by my
own journey through limbo. For the eleven months of Doug‘s illness, I put all aspects
of life that could wait on hold, as I did whatever I could to make Doug and Marie‘s
journey more bearable. It broke my heart to see Doug‘s physical decline between
visits, and the growing recognition in his eyes that he knew he was dying. I struggled
with the reality that I could not affect the ultimate destination of their journey. I
wanted so much to be able to make things better and, although I think I did contribute
to some mitigation of Doug‘s suffering, mostly I could only witness it. I realized the
power of walking alongside Doug and Marie. Although I could not change the
journey, I could offer my knowledge and support when it was needed. They knew
they were not alone. I will always treasure that time with Doug and Marie, when they
shared their thoughts, fears, and insights so openly. By listening to their experiences,
and walking alongside of them, and helping them in any way I could, I learned
something about the journey through limbo that I could never have known otherwise.
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
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I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."
( Stevenson, 1984)
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Chapter Nine: Improving Care for Families—Implications for Practice
The human sciences stand closer to moral knowledge than to that kind of
―theoretical‖ knowledge. They are ―moral sciences‖…Their object is man
and what he knows of himself. But he knows himself as an acting
being…concerned with what is not always the same but can also be different.
In it he can discover the point at which he has to act. The purpose of his
knowledge is to govern his action. (Gadamer, 1989, p. 312)
My focus in this chapter is to respond to a practical question: so what? I will
share how conducting this research study has affected how I think about and
understand this topic, and how the findings of this research could impact the lives of
chronic cancer patients and their families, cancer care practitioners, and society as a
whole. As the primary intent of this inquiry was to bring to light a deeper
understanding of experiences of families who are living with incurable but treatable
cancer, I sought to understand this topic through a variety of different approaches. I
conducted an extensive literature review which traced the historical evolution of
cancer therapies that have contributed to the reality that cancer can sometimes be
experienced as a chronic trajectory. I also reviewed literature which explored the
family experience with cancer across the disease trajectory. As well, I learned much
through dialogue with families who participated in this research, through doing the
interpretive analysis, and writing this dissertation. Lastly, I unfortunately gained a
deeper understanding of this topic by journeying with my own family through the
world of chronic cancer. In this final chapter, I begin by reflecting on the findings
from this study and my life journey, and by articulating how my thinking has been
changed by the experience of conducting this research.
The interpretive research findings produced in this study offer knowledge of
what experiences of living with chronic cancer feels like for families. The area where
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I see these research findings applying most meaningfully to oncology nursing practice
revolve around building capacity for nurses to empower families who are living
through the reality of chronic cancer, to live well. Specific areas explored in this
chapter include the oncology nurse‘s role in actualizing the family as the unit of care,
advocating for meaningful care during the chronic trajectory, and facilitating the
integration of supportive and palliative care into cancer care. Empowering oncology
nurses to provide this type of care will require an expanded scope of nursing
education and professional development support and so this has also been explored.
Also included in this chapter are areas for future nursing research, limitations of this
research, and closing remarks.
The number of patients and families who are living with chronic cancer is
growing exponentially, but their experiences often remain shrouded and unrecognized.
Patients and families who find themselves living with chronic cancer, ―inhabit
somewhat different social and healthcare worlds than those of cancer patients whose
diseases follow a more conventional trajectory‖ (Thorne, Oliffe, Oglov, & Gelmon,
2013). It is substantially different than living with either curative cancer or dying of
cancer. The voices of patients and families living with chronic cancer must inform an
evolution in care provision if meaningful systems of support are to be created for this
growing sub-set of the cancer patient population. Gadamer (1989) explained that
language is the medium which allows a subject matter to be understood. This
research dissertation offers some common language about this topic so that a different
understanding of the experience can emerge.
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Reflecting and Learning
The advent of targeted therapies has made cancer as a chronic experience
possible. Never before in human history have we been able to control cancer so
effectively. This truly is a success worth celebrating, but this success is not without
hidden pinions. These novel therapies do not simplify everything and they are not the
magic bullet that will erase cancer worries from the human mind. New possibilities
have arisen as a result of scientific advancements in cancer treatment, and yet the
context of how cancer is understood has been slow to shift. Cancer remains
predominantly thought of as a disease that people are either cured of or die from, and
although fundamentally these two polar outcomes remain accurate, the advent of
effective targeted therapies has created a third intermediate outcome which is the
ability to live longer with incurable cancer. I have referred to this state as chronic
cancer.
Finding a new family narrative—A heroic journey. Families living with
chronic cancer need a new narrative to conceptualize their experience. Current
medical narratives are emerging in relation to the advent of targeted therapies as
demonstrated by the Hitchhiker Model of Cancer Control (Kantarjian et al., 2006).
Families however, need more than the individualistic medical narrative that captures
the family member‘s dependency on treatments for control. Rather, families need an
illness narrative that incorporates everyday life and encapsulates the complexities
families experience when living with chronic cancer. Gadow (1995) wrote that
knowledge generated by science about health and illness can be useful as a map to
show established routes, but it is useless in foretelling what the foreign land will feel
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like. An illness narrative is not a medical case study or clinical accounting for the
trajectory of their disease state, but rather an illness narrative brings together the rich
landscapes of both interior and exterior experiences, and allows the patient and their
family to be authors of their own experience. Disease refers to the alteration in
biological structure or functioning of the body, where as illness refers to how the sick
individual and their family experience their symptoms and disabilities, and thereby
illness narratives move beyond the medical narrative (Kleinman, 1988). Illness
narratives answer the metaphorical question of what it is like to live in their world
(Gadow, 1995).
The findings of this study revolve around what patients and families shared
with me about what it is like to live in their world of chronic cancer. Although the
experiences of each family were uniquely rich in context and events, I found it useful
to weave their illness narratives together around the metaphorical frame of the hero‘s
journey as developed by Campbell (2008). Metaphors illuminate meanings within a
situation by drawing on meaning from similar encounters that have occurred outside
of the experience (Gadow, 1995). The application of the journey metaphor to this
particular topic was a purposeful choice as regardless of background or prior
knowledge of this topic, all readers could connect in some way to the organizing
metaphor of life as a journey (Becker,1999). When disasters strike and life must be
reorganized to accommodate a new reality, a familiar metaphor can help the family
frame their experiences simultaneously within what is both familiar and foreign.
Becker (1999) argued that because metaphors both frame and structure meaning, they
can facilitate the reconstitution of the everyday, while assisting families to find
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meaning in their new experiences. Etymologically, the word metaphor originated
with the Ancient Greek word metaphora which meant to transfer (On-line Etymology
Dictionary, 2013). The reason I chose to utilize the hero‘s journey metaphor was so
that meaning could be transferred from our understanding of everyday life to
understanding how living with chronic cancer impacts the everyday life of families.
Participants themselves used the journey metaphor often when speaking about
their experiences, but did not refer to themselves as heroes. When family members
were specifically asked if they saw themselves as heroes, they were uncomfortable
with the label. Some participants identified the family member with cancer as a hero,
but they themselves struggled with the concept of being a hero. Participants
suggested they were only doing what was called for by the situation. Therefore, I
looked deeper into the characteristics of heroes and found that in the participating
families, cultivating and demonstrating heroic traits facilitated their ability to live
well with chronic cancer. Frank (1995) wrote that helping families see themselves as
everyday heroes is beneficial as it moves family members from passive observers into
active change agent roles. This conceptual shift empowers families to see how their
individual actions are implicated in the journey and gives them a framework for
understanding their own personal growth and the learning gained from experience.
Therefore, while holding on to the qualities and characteristics of heroes, I followed
the participants‘ leads and did not label the family members as heroes. Instead, I
shifted my language to refer to the journey as a heroic journey that the family must
make together.
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Exploring experiences on this heroic journey. Just as journeys evolve over
time, experience is also a process (Gadamer, 1989). Gadamer (1989) offered that the
word experience is used in two different senses: ―the experiences that conform to our
expectation and confirms it and the new experiences that occur to us‖ (p. 347). I have
come to recognize the arrival of cancer as the second type of experience described by
Gadamer. Cancer is never expected nor welcomed, and it always precipitates a crisis
in the world of family. The searing moment of diagnosis determines all future events
in the family‘s illness narrative. Being diagnosed with incurable cancer forces the
family to face a reality that not all things can be reversed and there is not always time
for everything (Gadamer, 1989). The moment the family is told their cancer is not
curable, but there are treatments that can slow its progression down, they are
catapulted into yet another world called chronic cancer. As in Campbell‘s (2008)
description of the hero‘s journey monomyth, the family‘s heroic journey through the
world of chronic cancer follows a predictable structure as demonstrated in Figure 2,
yet it also differs from Campbell‘s monomythic structure in some specific ways that
need to be understood.
Families do not choose to embark on this adventure as in Campbell‘s hero‘s
journey. Rather, families are transported into the unknown world by their
incurable diagnosis.
In Campbell‘s monomyth, the purpose of the quest through the unknown
world is to face the ultimate challenge, defeat the enemy and return home to
one‘s village victorious. In the family‘s heroic journey, they cannot defeat the
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enemy, as their cancer is incurable. Without a miracle, or some other curative
treatment, the cancer will cause their death, or they will die of something else.
STRIVING TO RETURN
TO WELLNESS
HEALTHY
FAMILY
PRE-CANCER
Known world of
everyday life
Transported across
threshold by the words
“you have incurable
but treatable cancer”
The return to
everyday life post
cancer
Unknown world of
chronic cancer
Family
struggles to
cope with their
loss, and to find
a new everyday
without their
family member
Facing the darkest
moment: Death of
Family member
Family strives
to live well
with chronic
cancer
-
The end of treatment
options are reached and the
phrase “there are no further
treatments” is heard
-
BEREAVEMENT CARE
END OF
LIFE CARE
CHRONIC
CANCER CARE
Figure 2: The family‘s heroic journey through chronic cancer. This figure is a visual
summation of the family‘s heroic journey through the world of chronic cancer. The
thick black lines represent thresholds between phases of the journey. The focus of
this research has been on the chronic cancer phase of the journey illustrated above as
the blue quadrant.
In Campbell‘s monomyth, the transformation of the hero is an inner
transformation where the hero, having faced the ultimate challenge, learns a
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valuable lesson in their victory. In the family‘s journey the changes are both
internal and external. Their family structure will be forever changed, and their
journey will not culminate with a victory over cancer. Therefore, finding the
lessons in their experience is painful and difficult. Eventually their loved one
will die, and therefore it can feel like all their heroic efforts have been a
failure.
In the family‘s heroic journey, the purpose of the journey is not to return to
the known world, but rather their purpose is to learn to live well in the
unknown world. The family must work to make this new world their home, as
that is the only world that they can inhabit as an intact family unit. It is
always with a heavy heart that the families return to a non-cancer world,
where a new heroic journey must begin; a new journey without their loved
one. It is there that the remaining family members must again find the
courage to reclaim another ―new everyday.‖
Developing insight—Becoming wise. Examining these instances of
difference between Campbell‘s monomyth and the metaphorical heroic family
journey through chronic cancer produced powerful insights for me. Gadamer (1989)
wrote, ―insight is always more than the knowledge of this or that situation. It always
involves an escape from something that had deceived us and held us captive‖ (p. 350).
I have worked in the area of cancer care for over twenty years, and have focused
much of my energies on understanding how cancer treatments work, leaning how to
safely administer them, and striving to empower patients and families to manage the
symptoms associated with treatments. I have now come to realize how seductive it is
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to stay firmly entrenched in a stance of awe, marveling at what modern science has
been able to achieve in relation to the control of advanced cancer.
Looking beyond the successes. Keeping one‘s gaze firmly on the molecular
and biological activity of these treatments is more comfortable than broadening one‘s
gaze to acknowledge the limitations too. Successful cancer treatments demonstrate
tangible evidence of man‘s dominion over nature. We can pat ourselves on the back
for our amazing ingenuity and scientific prowess. However, if one does not
consciously acknowledge the very real limitation that targeted therapies have,
specifically their inability to cure advanced cancer, the full spectrum of the family
experience of living with chronic cancer remains shrouded. It is uncomfortable for
healthcare professionals to recognize the limits of science. When faced with inability
to fix everything, healthcare providers feel inadequate, but there is value in
experiencing and being aware of one‘s limits. ―What a man has to learn through
suffering is not this or that particular thing, but insight into the limitations of
humanity, into the absoluteness of the barrier that separates man from the divine‖
(Gadamer, 1989, p. 351). No matter how amazing scientific discoveries are,
ultimately science cannot cure mortality.
Balancing fears and hopes. Unlike healthcare professionals who try to limit
their gaze to the medical aspects of cancer therapies, families shared that they
continually grapple with managing their fear of disease progression and death, while
holding on to the hope that the treatments will work, and that their family will stay
intact longer. In their experiences, the two are always linked, but often their fear of
progression and death is left unspoken. I now know, through my own family
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experience, that families also suffer as a result of their inability to fix everything. The
hardest part of my own experience of journeying with Doug, Marie, and Levi was my
inability to change that Doug was dying or that Marie and Levi were going to have to
live on without him. When we could not stop Doug‘s seizures, we felt helpless and
scared. When the CT scan showed that his disease had progressed despite our close
adherence to the prescribed treatment protocols, we were all left feeling like failures.
Accepting limitations. Our painful lesson to learn was that we were not in
control of everything. Some things, like how the cancer responded to the treatments
or what symptom would emerge next, were beyond both our control and our powers
of prediction. However, other things were within the scope of our control. We
learned how to recognize the early signs that a seizure was starting, and if we acted
quickly enough, we could prevent the seizure from progressing. We could ensure his
medications were given at all the right intervals, thus keeping Doug comfortable. As
a result, medication schedules were written down and posted in the kitchen, so that
everyone knew when medications were to be given. A special container with labeled
timeslots was purchased and used so that, at a glance, anyone could see if the next
dose had been given or needed to be administered. When a schedule changed, alarms
were set as reminders, but once we were all familiar with the new routine the alarms
were no longer needed. We found lots of ways to live as well as possible given the
difficult realities we were dealing with.
Reclaiming joy. We also realized that much joy could still be found even in
the midst of our chronic cancer journey. We could still attend Levi‘s ski races and
marvel at his skill, although getting Doug out of the house took more and more effort
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as his mobility declined. Once we could no longer leave the house, we found that we
could still watch funny television shows together and share a laugh. Even near the
end of Doug‘s life, when he was confined to bed due to paralysis, we would watch
those funny shows with him in the bedroom. We learned that, although we could not
change the ultimate facts that Doug had progressive advanced cancer and that he was
dying, we were not totally helpless. There were always ways for us to collectively
make things a little better.
Nurturing practical wisdom. Coming to terms with our own limitations was
an important lesson, as it allowed us to differentiate between what we could change
and what we could not. In doing so, we were able to recognize the contributions we
could make to the wellness of our family and each individual member. Gadamer
(1989) wrote, ―insight always involves an element of self-knowledge and constitutes
a necessary side of what we call experience in the proper sense. Insight is something
we come to. It too is ultimately part of the vocation of man—i.e., to be discerning
and insightful‖ (p. 350). Living through each varied experience that came our way,
and learning from them enabled us to become people who had insight into the
situations at hand and enabled us to make good decisions about what we should do.
The word insight, which originated in Middle English, means to have the capacity to
gain an accurate and deep understanding of someone or something, and originally
referred to wisdom (Oxford English Dictionary, 2005).
Aristotle used the word phronesis, which means practical wisdom to refer to
this type of knowledge (Svenaeus, 2000). According to Aristotle, practical wisdom is
the ―ability to judge the right end of action in a particular situation and make a wise
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choice‖ (Svenaeus, 2003, p. 409). Practical wisdom must be cultivated though
experiences and the knowledge gained through living life (Ohlen, 2002). This
resonates with what I described in chapter six as finding a new every day. If
treatments for control are successful, and the family is granted enough time in the
world of chronic cancer to develop the ability to make good decisions about what
should be done in a particular situation, then the family could once again experience
life as predictable, orderly, and flowing. Families who cope well find within
themselves strength they never realized they possessed, and manage to handle more
than they ever thought possible. When the awareness that they do not have forever is
acknowledged, they find deeper comfort in the fact that they do have today.
Acknowledging the full journey through chronic cancer. Although
oncologists routinely remind patients and families who are living with chronic cancer
that their treatments will not cure their disease, the primary focus of discussion
remains on treatments options, side effect management, and the patient‘s schedule of
tests, appointments and monitoring. This leaves much of the family‘s experience
outside the realm of discussion with the oncology team, which can result in families
feeling like much of their cancer experience is invisible and therefore unspeakable
(Detmar, Aaronson, Weaver, Muller, & Schornagel, 2000; Eid, Petty, Hutchins, &
Thompson, 2009). The need to create space within the clinical encounter for all
aspects of the family‘s experience is growing, but in order to do so there must be
recognition of the importance of moving beyond the medical narrative.
A more comprehensive narrative. Establishing a widely recognized narrative
of the family‘s heroic journey through chronic cancer represents an important step
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toward acknowledging all aspects of this experience. This is not to say that excessive
focus needs to be put on the fact that the narrative will include the death of their loved
one, but in order to empower families to develop their own insight into how to live
well, they must recognize the finitude of human life. Some families who are on
treatments for control, hold onto narratives that revolve around restitution, miracles,
and the belief that somehow they will overcome their cancer. These are the families
who are shocked when death finds them, even though they were told many times that
the cancer was incurable. All too often, these are also the families who are left
unprepared for their return to a non-cancer world without their loved one. When
families do try to tell a chronic cancer narrative, they often spend tremendous energy
educating those they are speaking to, as very few people know much about this
experience. Participants in this study shared that they often avoided explaining the
chronic nature of their disease because it was less painful to avoid the conversation all
together.
Shifting from “with” to “through”. When I began to struggle with how to
write this final chapter, I realized that a fundamental shift had occurred in my
thinking. I set out to understand the family experience of living with chronic cancer,
only to realize how focusing on the words, ―living with‖ had limited how I could
understanding this topic. Instead, I have recognized that to understand this topic
more fully I had to try to understand the family experience of living through chronic
cancer. Through simply means to move from one side of something to the other
(Oxford English Dictionary, 2005). Just as Campbell‘s monomythic hero‘s journey
goes full circle, I have come to recognize that, without acknowledging the full
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trajectory of the family‘s journey which includes coming to the end of treatments for
control and living beyond the death of their loved one, understanding the full scope
and complexity of this topic is compromised.
Holding the complexity. I gained this insight through purposely exploring the
tension between general understanding of hitchhiking, how it was used in the
Kantarjian et al. (2006) hitchhiker model and how the participants in this study
experienced their dependence on cancer therapeutics to live longer. The hitchhiker
metaphor adequately addresses the individual‘s experience of living with chronic
cancer, but it does not address the family experience or what happens when no further
rides can be hitched. In this way, it is not broad enough to address the family‘s
journey through chronic cancer because with each ride that is hitched, the family
wonders if it will be the last one. As well, eventually each family will be forced to
leave the world of chronic cancer behind when their loved one dies.
Living well in limbo for as long as possible. Generally people hitchhike to
get somewhere, but in the situation of chronic cancer, families hitchhike in order to
avoid getting to the destination. This fundamental difference drew me to conclude
that living with chronic cancer was like living in limbo, suspended between stages of
life. As complex as life in limbo was for all participants, a shared consensus was that
living in limbo was preferable to reaching the end of hitching rides. Again the
difference here struck me. For those outside of this experience, it is difficult to
understand how being stuck in limbo could be seen as a successful outcome. There
are so many implications to everyday life that stretch out forever like treatment
schedules, blood tests, side effects, financial challenges, fear of loss, uncertainty
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when the disease will progress, and the list could go on. Families living this
experience are often asked how can you go on? Each family finds their own answers
to this question, but whatever the answer, underlying it is the reality that if they do
not go on with hitchhiking in limbo, the outcome will be that their loved one will die
sooner, or in more discomfort than if they continue with treatments.
Preparing for the ultimate challenge. Families hope to have a long time in
the world of limbo, and in this way achieving cancer control through ongoing
treatments can be seen as a success and yet, at some point, the end will be reached.
Unless a way is found to cure advanced cancer, people will continue to die of it.
Defining our focus beyond the individual and beyond just ―living with‖ chronic
cancer allows us to see the family journey through chronic cancer more clearly.
Maybe the ultimate challenge a family faces on this journey is not overcoming cancer,
maybe the ultimate challenge is becoming the kind of family who can deal well with
whatever life brings their way, including the death of their loved one and the living
that will go beyond the parting. This insight has caused a major shift in my thinking.
I now recognize that my quest to understand the family experience of living with
incurable but treatable cancer was too narrow. Focusing only on living with was the
safe route. It allowed me to stay comfortably in the stance of awe and wonder to the
advancements of medical science. It allowed me to see my topic in terms of success.
Let me clarify, I am still in awe of the amazing advancements that have been made in
the area of treatments for chronic cancer control, as they are successfully helping
families stay intact longer, but I now realize that living with is not the end point. The
family‘s journey will go on beyond learning to live with chronic cancer. The family‘s
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journey goes beyond the death of their loved one and involves their return to a world
without cancer.
Listening to experience to improving the system. Narratives of living
through chronic cancer need to be told, they need to be heard, and they need to inform
health system evolution. Families who have been through this experience are best
positioned to help inform what types of cancer care supports should be created for
this emerging population, but first, chronic cancer must be recognized as an actual
phase on the cancer journey. It is my hope that this dissertation contributes to a
growing awareness and familiarity with this experience. As familiarity and comfort
with this topic grows, patients and families will hopefully find it easier to bring
language to their experiences and share their practical wisdom gained through their
journey with others who are struggling to live well in the world of chronic cancer.
The cancer care system may also be alerted to the growing importance of integrating
patient and family experience into system planning, so that families who inhabit the
limbic world of chronic cancer can find meaningful supports to live as well as
possible.
So What?
I have now come to the important question: So what should we do differently
in cancer care as a result of these findings? What purpose will be served by knowing
more about the family journey through chronic cancer? If the reader of this
dissertation was looking for knowledge that was going to offer new ways to control
advanced cancer then the findings of this research will not be of value. Nor will these
findings be helpful if the reader wants to examine this topic safely from a distance,
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without danger of being drawn in personally. This dissertation does not offer a place
where the reader can stand over this topic and merely observe. These findings are
intended to confront readers directly and to cause them to think about what they could
do differently to better support families who are living this experience. The purpose
to know these things is to recover our place in the world as situated knowers (Gadow,
1990). The purpose of knowing these things is to guide our actions in the future.
I have struggled with writing this chapter because when selecting which
applications to include, I recognized that I was closing off other applications that
were just as valid. I re-wrote this chapter three times, and could have re-written it
three more times, but finally I had to commit to what would be included and what I
would leave out. I have come to understand through my struggles that both the
implications and this topic are inexhaustible. There is no way to get to the end of
understanding this topic or applying these findings to practice, because we must
understand the topic and how to apply knowledge in relation to this topic from within
the situations that call for such knowledge to be applied. Each person who strives to
understand this research will do so from a particular perspective. I have accepted that
there is no one right answer to the question of ―so what.‖ These are not the only
implications; rather they are the ones most relevant from my perspective.
The word perspective originated from the Latin word perspectus which means
to clearly perceive, to inspect, look through, or to closely examine (On-line
Etymology Dictionary, 2013). As I hold a variety of perspectives from which I view
this topic, I found the most meaningful way to select which implications to include
was to identify the perspective I would use as my primary lens, and the audience I
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wanted to first and foremost address. As I currently have an academic and
professional responsibility to develop the knowledge base for professional oncology
nursing practice, I have selected implications for practice from this perspective. The
area where I see these research findings applying most meaningfully revolves around
building capacity for oncology nurses to empower families who are living through
chronic cancer to live well. This includes the oncology nurse‘s role in practice,
policy, and system change to incorporate the family as the unit of care, advocating for
meaningful care on the chronic trajectory, and the integration of supportive and
palliative care as a standard approach within cancer care settings. Also, I explore the
areas where an expanded scope of nursing education and practice is required to
empower oncology nurses to provide this type of care.
Empowering families to live well—Enhancing the role of oncology nurse.
Empowerment is a common word in the modern western lexicon, but little attention is
given to what it actually means. At the core of empowerment is its root word power,
which has several meanings, but the first two listed in the Oxford English Dictionary
(2005) are ―the ability or capacity to do something or act in a particular way‖ and ―the
capacity or ability to direct or influence the behaviors of others or the course of
events‖ (p. 1381). The word power originated from the Latin word posse which
simply means ―to be able‖ (On Line Etymology Dictionary, 2013). Although
oncology nurses do not often think of themselves as having much power, they
actually do. They continually use their knowledge and relationships with others to
direct or influence other‘s behaviors. Nurses tend to refer to the work of influencing
others as advocacy, education, or coaching. That nurses have the power to influence
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others is a given; the more important issue is what purpose guides their application of
their power and influence (Baker, Egan-Lee, Martimianakis, & Reeves, 2011).
As an oncology nurse, I feel uncomfortable conceptualizing nursing practice
as a power relationship. Rather, I am more comfortable framing nursing practice as
empowerment. I believe that my comfort emanates from what happens to the concept
of power when the prefix em is added. Em is used to transform nouns to adjectives
(Oxford English Dictionary, 2005). Etymologically, em comes from the Latin word
emare which means to flow out, arise, or proceed (On-line Etymology Dictionary,
2013). Adding the prefix em shifts power from a thing that one possesses to a
relational process in which one participates (Page & Czuba, 1999). Empowerment
occurs when power flows from one person to another, but not for the purpose of
domination and control, but rather to strengthen the other‘s power (Page & Czuba,
1999). ―The beauty of empowering others is that your own power is not diminished
in the process‖ (Colorose, 2013).
Every day, oncology nurses make decisions, use their influence, and affect the
course of events in order to promote the well-being of those in their care. In this way,
nursing can be seen as a moral action. Nursing practice is governed by codes of
ethics which direct nurses to take actions that will promote a positive or good result
for those in their care (Bergum & Dossetor, 2005). Therefore the construct of
empowerment is a useful frame for nursing practice as nursing actions are driven by
trying to help people living with illness to regain their ability to manage the everyday,
and to assist with things that are beyond what they can manage. Importantly,
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empowerment is fostered when the focus of action is on the issues that the other
person defines as important (Page & Czuba, 1999).
The ―so what‖ of this research revolves around empowerment. Oncology
nurses cannot change the fact that these families have to live with chronic cancer, nor
can the everyday oncology nurse influence which treatments are developed, or how
effective the treatments administered will be at controlling disease progression.
However, oncology nurses are well positioned to influence and contribute to the
family‘s ability to manage their illness, and to live as well as possible through the
chronic cancer experience (Reiger & Yarbro, 2003). Oncology nurses can also
influence innovations in practice that will better support families on this heroic
journey. One such innovation in practice that this research findings calls for is
actively adopting families as the unit of care.
Families as the unit of care. Participants in this study spoke eloquently about
how they felt that cancer was a family experience. The moment they heard that a
family member had been diagnosed with incurable but treatable cancer, the whole
family was mandated to find a way to respond, to support each other, and to integrate
the turmoil that chronic cancer creates into their day to day lives. However, the
cancer care system, with its predominant attention to diagnosis and treatment, focuses
almost exclusively on the individual with cancer. Although there is wide spread
recognition of the importance of family support for the cancer patient, family
members are very rarely the recipients of formal interventions from oncology nurses
or other team members (Boyle, 2002). Hopefully this research will empower
oncology nurses to re-conceptualize their focus of care from the individual with
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chronic cancer to the family. This is not something that nurses need to wait for the
system to initiate. Each individual oncology nurse when providing care for this
population can act it upon.
A simple practice change that would operationalize the family as the unit of
care would be for oncology nurses to routinely integrate assessment questions that
move beyond how the individual is doing with their treatments to assess how the
family is managing. By incorporating questions about how the family is coping, the
nurse will be able to identify potential supports that may be helpful to this particular
family. Questions such as which family member has assumed new responsibilities as
a result of the cancer, who is overseeing the medications, or managing the schedule of
tests, doctor appointments, and treatment visits would provide valuable insight into
what is going on in the family. Many oncology nurses already do this informally, in
the waiting room or while passing the family members in the hallway, but if family
questions are formally integrated into the assessment, then even if the time during the
clinical encounter does not permit an in-depth conversation, it would open the
opportunity for the oncology nurse to follow up with the family on the phone, or in a
separate visit.
Advocating for meaningful care for the family. The second area of
application for these research findings is to empower oncology nurses to advocate for
meaningful care delivery that both extends life and optimizes the quality of family
life. In the setting of chronic cancer, and with family as the unit of care, it is no
longer adequate to define success in terms of individual survival rates. Survival rates
do not represent how a patient survives, at what emotional or physical cost, how they
195
have adapted, or how living with their chronic disease and its treatments has impacted
their family (Rees, O‘Boyle, & MacDonagh, 2001). Survival rates only represent if
the individual survived and for how long. If life extension remains the only indicator
of success, the cancer care system will continue to focus almost exclusively on the
individual and developing interventions that lead to life extension. However, as
Witter and LeBas (2008) asserted, success in chronic cancer involves providing care
with the goal of ―maximizing the area under the quality of life-over-time curve‖ (p. 2),
the need to balance interventions that offer life extension with interventions that
address and support the family‘s quality of life and ability to cope with their chronic
cancer becomes apparent (See Figure 3).
This represents a significant shift from the current focus of cancer care which
holds treatments for life extension as the primary purpose of interventions. The shift
towards holding life extension and improving the quality of the individuals/families
life as equal drivers to care must be acknowledged and understood by the entire interprofessional team, and oncology nurses have a central role in facilitating the shift.
Oncology nurses are well-respected members of the inter-professional team who have
the opportunity to advocate for attention to the full spectrum of needs that the patient
and family have. Ensuring that the inter-professional team is aware of the individual
family‘s illness narrative, as well as the individual medical narrative is one form of
advocacy that oncology nurses could easily take on. Attending the clinical review
rounds and supplementing the individual‘s medical narrative with the family‘s illness
narrative could achieve this. Routinely integrating this new content into team
discussions and planning would slowly start to shift how the team thinks about their
196
work and it would highlight the complexity and diversity of how families are
impacted by this journey.
Successful chronic
care assists the
individual and their
family live as well
as possible for as
long as possible
Quality of Life =
Ability to live well
given their realities
System inputs to
support optimization
of family‘s QoL
Goal of care: to
maximize the area
under the curve
System inputs to
optimize individual
life extension
Life extension =
Time
Figure 3: A matrix model for successful chronic cancer care. This figure represents
the equal prioritization of quality of life interventions and that aims to maximize the
area under the quality of live over
Inputs to improve quality of life—The role of supportive care.
Conceptualizing success as the relationship between life extension and quality of life
offers a thoughtful way to establish a more balanced approach to framing treatment
and care delivery decisions. This matrix model illuminates current imbalances
between interventions that focus on life extension and interventions that promote
quality of life as well as those that focus on individuals versus families. Interventions
that promote quality of life of the individual or family have been collectively defined
197
as supportive care (Fitch, 1994). Although the importance of access to adequate
supportive care services is widely recognized (IOM, 2007), the provision of
supportive care is often complicated by fragmented care delivery systems, a lack of
integration between supportive care services and medical treatments (IOM, 2001),
and by inconsistent assessment of supportive care needs (Brazil, Whelan, O‘Brien,
Sussman, Pyette, & Bainbridge, 2004; CANO, 2001).
Oncology nurses play a critical role in the identification and management of
supportive care needs (Fitch, Howell, McLeod, & Green, 2012; Sussman et al., 2011).
As direct care providers, oncology nurses can incorporate person centred dialogue
with the patient and family into their care, and subsequently tailor their assessments
and interventions on issues and symptoms that are relevant to the patient and family.
If meeting the particular patient and family needs are not within the nursing scope of
practice, then the nurse can refer the patient to other members of the interprofessional team to ensure the needs are managed appropriately. If the oncology
nurse does not open the person centred dialogue with the patient and family, there is a
risk that the patient and family needs will not be identified and thus supports will not
be put in place, even if they were available. Ensuring that oncology nurses are
competent and confident at identifying, assessing, and managing supportive care
needs that are within their scope of practice, and enhancing their awareness of other
supportive care resources that the patient or family could be referred to will optimize
the oncology nurse‘s ability to provide meaningful supportive care. This will require
the integration of supportive care into nursing curriculum and into ongoing
continuing competency education (Baer & Weinstein, 2013).
198
Acknowledging and addressing incurability. Improving quality of life for
families living with chronic cancer in part also revolves around shifting how cancer
care professionals communicate with families about how the goals of care and how
they will change over time (McLennon, Uhrich, Lasiter, Chamness, & Helft, 2013).
Participants identified this as an area for improvement. Prior to incorporating
conversations about how care goals shift across this journey, basic conversations that
acknowledge and address incurability are essential. Engaging in these types of
conversations challenges a long tradition within cancer care of concealing prognosis.
Only 25 years ago there was a widely held belief in North America that it was
acceptable for physicians to deceive patients about both their diagnosis and prognosis
(Goldie, 1982). There are many regions in Europe, Japan, and developing countries
where it is still common practice to withhold prognosis from individuals who are
dying (Taboada, 2013). Although practice in North America has shifted considerably,
modern physicians still report similar reasons for avoiding discussions regarding poor
prognosis, citing the belief that talking about incurability will make people depressed,
take away their hope, or reduce their overall survival (Mack & Smith, 2012).
Currently, the cancer care system focuses on directing cancer therapy,
stabilizing, or curing the disease, and prolonging life, while the palliative care system
plays a pivotal role in providing psychosocial, spiritual support, and pain and
symptom management to patients during end of life (Greer, Jackson, Meier, & Temel,
2013) but the two systems primarily operate separately (Bakitas et al., 2009). In the
past several years several research studies have been published which have
demonstrated actual survival benefits in populations of advanced cancer patients
199
when palliative care was integrated into care provided early in the advanced cancer
trajectory (Greer et al., 2013; Smith et al., 2012; Temel et al., 2010). In much the
same way as quality of life and time extension must be incorporated in a matrix to
guide care decisions, the same could be said for palliative and active treatment
interventions (Quill & Abernethy, 2013). Recently the Canadian Hospice Palliative
Care Association [CHPCA] (2013) released a national framework document called
The Way Forward. The reasons for the development of the framework are similar to
that of this research. Illness trajectories are changing, thanks to advancements in
medical treatment capabilities, and people are living longer with a variety of chronic
conditions. This is making it difficult to predict when they are nearing death, which
often means that many people are never offered palliative services such as social
supports, advanced care planning, or effective pain and symptom management.
Similar to this research, the CHPCA (2013) is recommending the integration
of supports that will help people with chronic illness manage their symptoms,
enhance their quality of life, give them a greater sense of control, and enable them to
make informed decisions about the care that they want. The word integrate originates
from the Latin word integratus which means to make something whole (On-line
Etymological Dictionary, 2013). In an integrated model, palliative care and active
disease modifying therapy would occur simultaneously (Meyers & Linder, 2003).
There would be no need to delay addressing issues arising from the incurable nature
of the cancer, and with this, the crisis of referral after all treatment options are
exhausted would be mitigated.
200
Although it remains a physician responsibility to divulge prognosis, and
changing physician attitudes and practices is beyond the scope of this chapter,
adopting an integrated palliative approach to cancer care would empower oncology
nurses, once the initial prognosis is shared by the physician, to engage in ongoing,
progressive, open, and sensitive communication about prognosis and their illness
trajectory. This would open space for conversations about advanced care planning
including discussions about the range of treatments available, as well as their benefits
and risks, psychosocial and spiritual supports available, and pain and symptom
management (CHPCA, 2013). This aligns with things that the participants in this
research identified as an approach to care that they would find helpful.
Expanded scope of oncology nursing education. As both the incidence and
prevalence of cancer increases, the need to ensure that every nurse has basic
knowledge about cancer and the needs of families living with cancer is growing.
There is also a growing need to support generalist nurses to specialize in the
specialized area of oncology nursing to ensure there will be adequate workforce to
care for this growing population (CANO, 2001)
Integrating new knowledge into the curriculum. In order to better integrate
both supportive and palliative care into oncology nursing work, specific efforts must
be made within the professional practice environment to ensure that oncology nurses
have the competencies, knowledge, and confidence to identify areas of need, engage
in meaningful conversations, and deliver meaningful care. Integrating oncology,
supportive, and palliative care knowledge into undergraduate curriculums is required
to enhance the generalist nurse‘s ability to contribute to improved quality of life for
201
patients and families living with cancer. As the incidence of cancer grows, and the
trend towards more people living longer continues to play out, all nurses will need
increased foundational knowledge about cancer, the disease and the illness,
knowledge of the chronic cancer trajectory, the family‘s journey through it,
supportive care, and palliative care knowledge.
Education to promote person centred care. As providing care which
contributes to improved quality of life requires a person-focused approach where the
perspectives of the patient/family inform care decisions (Naismith et al., 2010), it is
essential that education that enhances the delivery of person centred care is integrated
into academic curriculum and ongoing professional competency education. One of
the skill sets that is required to provide person centred care is person centred
communication (Epstein & Street, 2007). Person centred communication focuses on
eliciting, understanding, and validating the patient and family‘s concerns, feelings,
and expectations. It allows the oncology nurse to understand the patient in his or her
own psychological and social context, and opens the possibility that a shared
understanding of the patient or family‘s priority concerns, including what might be
helpful, to emerge. It also creates an opportunity for patients and families to be
involved in choices relating to their health (Epstein & Street, 2007). Educational
opportunities that promote this type of communication and practice must be
prioritized by organizations and educational facilities, and staff and students alike
must participate in the learning (Fallowfield, Saul, & Gillian, 2001).
How to become someone who can make good decisions. Providing person
centred care also requires a particular comfort with not knowing the answer in
202
advance of hearing the question. Bergum and Dossetor (2005) wrote that one can
never know what particular knowledge will be called for in advance of the arrival of
the situation where it is needed. As person centred care decisions must be made in
relation to the unique patient and family situation, then this question must be asked:
How can oncology nurses be prepared to make good decisions in the moments of
care? Gadamer (1996) explained that in order to provide this type of care a particular
form of attentiveness must be nurtured within the individual, ―namely the ability to
sense the demands of an individual person at a particular moment and respond to
those demands in an appropriate manner‖ (p. 138). Gadamer (1989) asserted that one
must become the kind of person who can make good judgments. Carper (1978/2009)
echoed these words when she wrote that caring for another person involves more than
just doing certain kinds of things; it also involves becoming a certain kind of person.
This dissertation can provide oncology nurses with a basic familiarity of this
topic, but it cannot remove the individual nurse‘s responsibility to make a good
decision and take wise action in the moment when action is required. Although
abstract principles and technical skills are necessary for oncology nursing practice,
alone they do not prepare the student, or the nurse for the complexities of caring for
families. Oncology nurses must become comfortable knowing there is no viewpoint
where the situation can be viewed safely from above. Nurses must act in ways that
nurture the well-being of those in their care, without the certainty that what they are
doing is right (Caputo, 1993). One way to preparing student nurses and oncology
nurses for these relational moments is by engaging in work to develop a ―moral
imagination‖ (Benner, Sutphen, Leonard, & Day, 2010, p. 165). Working through
203
clinical problems or particular family issues in a safe learning environment nurtures
the development of a moral imagination, because the learner is continually asked to
ponder the question: What would I do in a similar situation? Any of the concepts or
experiences shared in this dissertation could be useful in a teaching/learning
environment for development of moral imagination around caring for families living
through chronic cancer. Other avenues to develop a moral imagination would be to
read other types of literature, study philosophy, or explore the ethics of relationships
(Bergum & Dossetor, 2005) and obligations (Caputo, 1987, 1993).
Utilization of advanced practice nursing roles for chronic cancer care
delivery. Over the past 15 years, advance practice nursing roles have become more
common in cancer care delivery settings as recognition that optimizing the nursing
contribution to health care is an effective strategy for quality improvement (Schober
& Affara, 2006). Currently, there are two advanced nursing roles that are recognized
in Canada: the clinical nurse specialist and the nurse practitioner (CNA, 2008). Both
are present within the cancer care system. Although these roles are fundamentally
different, they both incorporate aspects of clinical care, education, research,
consultation, and leadership, with the nurse practitioner role being more heavily
invested in clinical care delivery (CNA, 2008). Compelling evidence exists that care
from an advanced practice nurse can improve client and health system outcomes
related to health status, functional status, quality of life, satisfaction with care, and
cost efficiencies (Bryant-Lukosius, DiCenso, Brown, & Pinelli, 2004). Therefore, as
chronic cancer care becomes a growing reality for more and more Canadian families,
there is much potential for the evolution of cancer specific advance practice nursing
204
roles to improve system capacity for providing high quality care for this growing
population.
When cancer patients are stabilized on ongoing maintenance therapies, it may
be reasonable to have their care managed by a nurse practitioner. Although each
province has different regulation around the scope of practice, nurse practitioners are
licensed health care providers who can manage most aspects of patient care
autonomously. As this is an emerging population within cancer care, and as the scope
of their needs become clearer, comparative research could be conducted to establish
the effectiveness of the nurse practitioner role as a primary cancer care provider
within this chronic cancer population as compared to management by medical
oncologist or medical associates.
Clinical nurse specialist roles currently play a significant role within the
interdisciplinary palliative care team, but are not as common in cancer care agencies
as nurse practitioner roles. Clinical nurse specialists also play a leading role in the
development of clinical guidelines, protocols, and facilitate system change through
embedded leadership and mentorship of staff (CNA, 2008). As the number of people
who require cancer care grows in the coming years, ensuring that all specialized
oncology nurses are working to full scope of practice will become essential. Thus the
clinical nurse specialist competencies around leadership, education, system change,
and research will be well placed to enhance system capacity to care for all cancer
patients, including those who have chronic cancer. This is another rich area for
potential nursing research in terms of optimizing system change, enhancing person
and family centred care, and integrating supportive and palliative care delivery.
205
Nursing leadership—Creating a moral cancer care community. Just as
nursing education must support learners to develop a moral imagination, nursing
leadership is required to create a moral health care community where patient and
family centred care is valued, promoted, and researched, and a positive professional
practice environment is shaped and sustained. Leaders in such a community would
continually challenge themselves and each other to select operational actions which
respond to this moral question: What would enhance our staff‘s ability to deliver
patient and family centred care? As nursing has a different moral mandate than
medicine in that nurses are expected to address the full spectrum of needs with less
emphasis on treatment and cure than medical practitioners (Storch, 2004), it is
imperative that the nursing voice be included at the senior leadership level of cancer
care systems.
Being an effective nursing leadership entails more than completing graduate
education, accepting a senior level administration role, and convincing staff to follow
the rules, standards, and best practice guidelines. Rather nursing leaders must be able
to encourage communication, teamwork, inter and intra professional collaboration,
and empower staff to provide high quality care within the ever changing and
increasingly over burdened modern health care environment (Tinkham, 2013). This
leadership style, known as transformational leadership (Porter O‘Grady & Malloch,
2007) has been demonstrated to be a powerful enabler of improved patient care and
organizational outcomes such as improved job satisfaction, strengthened
organizational commitment, increased productivity, reduced turnover, and enhanced
group effectiveness (Clavelle, Drenkard, Tullai-McGinness, & Fitzpatrick, 2012).
206
With such compelling evidence, tangible actions to increase the transformational
leadership capacity within nurses should be initiated. This could include enhancing
the leadership development content within undergraduate and graduate curriculums;
providing mentorship, and leadership training to new nurse leaders (APNs, Clinical
Educators, Nurse Managers, Professional Practice Leaders, etc.); developing an
approach to succession planning within nursing departments; and creating
organizational visibility of how nurse leaders value, encourage, recognize, reward,
and implement innovation (Tinkham, 2013). Further to creating more capacity for
this type of leadership, research is required to gauge how these actions impact
outcomes.
Areas of further nursing research around this topic. Beyond the areas of
future research that I have already identified, there are several areas of research that I
feel particularly drawn to as a result of conducting this study. One is to explore
experiences of families who have reached the end of a long period of chronic care,
and how they experience the transition from active treatment to a fully palliative
approach to care. In my current work, I often receive complaints from patients and
families about how they felt abandoned by the cancer care system after treatment
options were exhausted, which makes me wonder how we could improve this period
of inevitable transition. I also continue to be perplexed by the families who express
shock that their family member is dying, even though they have been living with
incurable progressive cancer for years. I am also curious about how we could better
prepare families for the ultimate challenge of facing the death of their loved one. I
wonder about how families experience the next phase of their heroic journey after
207
their loved one‘s death. What types of supports do they find helpful when
overcoming the loss of their loved one and re-learning how to live again in the noncancer world? Is the recovery trajectory of the family affected by the integration of
palliative supports early in their cancer journey?
Another potential area for research would be to explore the impact of
integrating a chronic cancer family assessment clinic into the clinical management of
patients who have incurable but treatable cancer. Families spoke about how having
the opportunity to have a family appointment where issues around chronic cancer
could be explored and family strategies around coping with chronic cancer could be
formulated. The addition of this type of family support may be meaningful for
families and could prevent other health system utilization down the road. The
research findings described in this dissertation could also be used to create a family
educational resource to educate patients and families about the journey they are on
and what may lay ahead. As so little is known about the best ways to support families
who are living with chronic cancer, the opportunities for meaningful research are
plenty.
Limitations of this research. This study was limited by the voices that were
not heard. All families who chose to participate were enjoying a relatively stable
period of disease control as a result of ongoing treatments that spanned from a few
years to over a decade. However, not all families are so fortunate to gain so much
time, or to have such good quality of life while on treatments for control. The voices
of the families who never managed to find a ―new everyday‖ were not heard in this
research. Therefore, these research findings do not represent the full difficulty when
208
the trip through the world of chronic cancer is expedited. Some family experiences
not heard include when every treatment fails, and when symptoms are uncontrollable.
In many ways, this was the experience that my own family had. We inhabited the
world of chronic cancer for only 11 months, and nothing worked as well as we or the
oncologist hoped. For some families, this journey may be as short as days or weeks.
The types of supports families need are significantly impacted by the rate at which
they are journeying through the world of chronic cancer. As this research was never
designed to differentiate to this level of detail, therein remains a limitation of this
research.
Other limitations of this research include the fact that only Caucasian, English
speaking participants were enrolled. As the family‘s culture and belief system
significantly affect the illness experiences of families, this research is unable to speak
to the differences in how families from different cultural or religious backgrounds
experience the journey through chronic cancer, or what types of supports they might
find helpful. As this research never set out to explore the impact of cultural or
religious beliefs on the experience of families with chronic cancer, those questions
are left unanswered. As well, my initial focus on living with cancer may have limited
the conversations/questions asked to the families about their anxieties regarding end
of treatment. It was not until I wrote this chapter that I recognized the subtle shift in
meaning that occurred when I stopped thinking about living with and instead began to
conceptualize the journey as living through chronic cancer.
Concluding Remarks
In the end…hermeneutics does not lead us back to the safe shores and terra
firma; it leaves us twisting slowly in the wind. It leaves us exposed and
209
without grounds, exposed to the groundlessness of the mystery… (Caputo,
1987, p. 267)
Although this research opens space for a different understanding of the family
experience of living through incurable but treatable cancer to emerge, it does not
provide specific answers about what exactly those tasked with caring for this
population should do differently. It does not define the exact trajectory that someone
with chronic cancer will follow, nor does it offer a prescriptive protocol that if
followed will ensure optimal outcomes. Instead, this research proposes a different
way of thinking about and understanding the patient and family experience of living
with and through chronic cancer, which if embraced by the cancer care professional,
can create new opportunities for meaningful care delivery in the future.
The world of cancer is changing. What families with incurable but treatable
cancer are experiencing is different from the cancer experiences of the past, because
in the past, cancer could not be effectively controlled for long periods of time. While
every family facing cancer hopes for a cure, this new population must grapple with
their mortality while enjoying life extension sustained through ongoing treatments.
They are caught in a liminal world somewhere between terminal illness and living
relatively normal lives, with no certainty as to how long they get to stay there and the
constant worry that the disease could progress at any time.
Participants in this research bravely shared glimpses of what everyday life
with chronic cancer is like for families, highlighting both the complexity of the
experience and heroic efforts that that they apply to their lives which in turn have
enabled them to live well in the world of chronic cancer. It is my hope that this
research will contribute to an increased awareness that cancer can be experienced as a
210
chronic disease, and a broader recognition of the challenges that families face as a
result. Acknowledging and understanding how chronic cancer impacts the family can
influence the types of services, supports, and roles that will be developed. It can
inform integration of new content into curriculums and continuing education supports,
and drive a growing research agenda around chronic cancer. This knowledge is
vitally important to oncology nurses who are well positioned to empower families
with chronic cancer to live as well as possible, and act as an advocate within the interprofessional team for meaningful, appropriate care that aims to maximize both life
extension of the individual and quality of life of the family. Knowledge about this
experience will also be valuable to other members of the inter-professional team who
will care for these patients and families in other care settings, in the community, or in
their home.
My hope is that, as understanding of this experience grows, openness to
talking about the full range of the family experience of living with chronic cancer will
emerge. Currently, the cancer care team is most comfortable engaging in
conversation about treatments, side effects and self management strategies, but new
conversations that move beyond the physical disease management must be initiated.
Conversations about how the family is coping, or what types of strategies they have
tried to minimize the impact of chronic cancer on their lives will open new
opportunities to glimpse the inner world of the family, and for tailored support to be
offered. With each new conversation opened, the cancer care team will be offered
new insights into the full complexity of this difficult journey, including the resiliency
and strength of the family as well as the depth of their fears and suffering. New
211
innovations will be conceptualized, implemented, and evaluated to establish what
types of supports improve the family‘s ability to live well with and through chronic
cancer.
When I asked my sister Marie what she thought was the most important
change that was needed within the cancer care system to better support families who
are living in the liminal world of chronic cancer, she indicated to me that those
families needed help building a new narrative to hold and make sense of their
experience. Families who find they are living with chronic cancer have never been
faced with anything like this before, and they struggle with understanding what
exactly they are in the middle of. No matter how familiar the cancer care
professionals are with this experience, or how many supports are developed, or
offered it is new, scary, and overwhelming for each individual family who must
embark on this difficult journey. In Marie‘s opinion, offering the families a way to
conceptualize, and understand the journey they are on so that they can consciously
adapt to their new realities was the fundamental starting point. It is my hope that the
interpretations offered in this dissertation offer families that new narrative, one of a
heroic journey that they are on together.
You‘ll take a map, of course, and keep it open
in front of you on the dashboard,
though it won‘t help. Oh, it‘ll give you mileages,
boundary lines, names, that sort of thing,
but there are places yet
where names are powerless
and what you are entering
is like the silence words get lost in
after they‘ve been spoken.
What you‘re looking for are the narrower,
unpaved roads that have become
212
the country they travel over, dreamlike
as the spare farms you catch
in the corner of your eye,
only to lose them
when you turn your head. The curves
that happen without warning
like a change of heart,
as if, after all these journeys,
the road were still feeling its way through.
(Wallace, 1984, p. 20)
Even though there is no map that can be offered that will provide certainty of
the paths they will travel, what can be offered is an approach to the journey, and
strategies that can empower families to travel their unique journeys with as much joy,
courage, time, and quality as possible.
213
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Appendix A: Letter of Introduction-Adult
To Whom It May Concern:
Thank you for your expressed interest in this research study. I am an experienced
oncology nurse who is currently completing my Doctoral studies in the Faculty of
Nursing at the University of Calgary. As part of my programs final requirements, I
am conducting this research study based on my belief that cancer doesn‘t just happen
to one person, it happens to a family. Right now, across Canada many families are
facing new challenges as a result of successful innovative treatments that can control
cancer‘s progression, even when it is incurable.
These new treatments are shifting how cancer is experienced both individually and as
a family. In 2007-08, I conducted a similar research study focused on understanding
what this experience was like for the individual with cancer. This subsequent research
study will build on the knowledge obtained from the initial study by exploring the
complexities of how family are affected. Little research exists about how families
experience living with cancer in this dimension. In order for healthcare providers to
know how best to support families and individuals in the midst of this experience, a
basic understanding of what families are experiencing is required.
The goal of this research is to craft a beginning understanding by collecting the
stories of living this experience from families such as yours. By sharing these
findings with University groups and Cancer care agencies, more effective care and
support can be designed and offered to families living with cancer that can be
controlled but not cured. The attached consent forms provide specific information
about this research project. The project is supervised by Dr. Raffin-Bouchal (403XXX-XXXX). If, after reviewing the attached forms, you and some members of your
family would like to participate, you can contact Linda Watson (403-XXX-XXXX) to
set up an interview.
I would like to thank you in advance for any assistance that you may be able to
provide.
Sincerely,
Linda Watson, RN, PhD(c)
250
Appendix B: Child Information Sheet
The purpose of this study is to try to understand what families go through when
someone in their family is having cancer treatments. More and more families have to
face the scary disease of cancer, and if doctors, nurses and other healthcare workers
are going to be able to help families cope, they have to understand how complicated
this experience is for families, including kids.
Very little research has been done looking at how families deal with ongoing cancer
treatments that can keep cancer from getting worse, but can‘t promise to make it go
away completely. The researcher is curious to understand how families balance the
work of looking after the person with cancer, while still looking after all the needs of
the other people in the family. The researcher is also curious about how this
experience impacts kids in the family.
This research study is designed to collect how the different people in the family deal
with cancer and ongoing treatments to control it. The researcher is planning to
interview about 10 different families who are living with this cancer. Each family can
decide to be interview all together, or separately, depending on what they think would
be best. Sometime people like the security of being all together for the interview, but
sometimes people want to be interviewed alone so they don‘t hurt anyone else‘s
feelings. Either way is fine. The interviews would be recorded to help the researcher
remember all the important things the family members tell her.
After all the interviews are finished, the researcher will write a report about how
families have explained their experience. That report will then be used to teach other
health care workers about how complicated this experience is for families, and how to
use these research findings to better care for other families who are trying to live with
cancer and treatments to control it.
You do not have to participate in this study. Even if you don‘t want to talk about how
this experience has been for you, your parents can still participate if they want.
Sometimes kids do feel better after talking about their experience, but I want you to
know that you don‘t have to. It is your choice if you want to participate.
Thanks for taking the time to read this introduction. Please talk with your Mom or
Dad about this study and if you want to participate. If you would like to share your
experience, your Mom or Dad can let the researcher know.
Sincerely,
Linda Watson, Registered Nurse, Cancer Care Specialist
PhD Candidate, Faculty of Nursing, University of Calgary
251
Appendix C: Consent Form—Adult
TITLE:
Navigating the flux: Understanding the Experience of Families Living
with Incurable but Treatable Cancer in their Midst
SPONSOR: Social Science and Humanities Research Council of Canada
INVESTIGATORS: Dr. Shelly Raffin-Bouchal (Principle Investigator), and Linda
C. Watson (Doctoral Candidate).
This consent form is only part of the process of informed consent. It should give you
the basic idea of what the research is about and what your participation will involve.
If you would like more detail about something mentioned here, or information not
included here, please ask. Take the time to read this carefully and to understand any
accompanying information. You will receive a copy of this form.
BACKGROUND
The life altering event of cancer affects many Canadians. In 2009 it was estimated
that over 171,000 Canadian‘s faced a new diagnosis of cancer and over 695,000
Canadians were living with cancer (Canadian Cancer Society [CCS], 2009). The
magnitude of cancer in today‘s society is staggering, but what these statistics don‘t
represent are the hundreds of thousands of Canadians who do not have a personal
diagnosis of cancer but suffer too, the family. Although family members do not
actually have to undergo surgery, chemotherapy, or radiation, their family ties cause
them to respond, struggle and experience firsthand the turmoil that cancer creates.
Due to medical advancements, new treatments exist that can control cancers for
longer periods of time than ever before. This is resulting in more people living longer
with cancer, even though it is not curable. Cancer is becoming a disease that can be
lived with, much the same as diabetes, renal failure and heart disease.
As more people live longer with cancer because of these ongoing non-curative
treatments, a growing number of families are faced with new and unfamiliar
challenges as they try to meet the needs of their loved one with cancer, as well as
manage the day to day responsibilities of their family life. Within healthcare our
focus is usually on the individual with the disease and its treatment, but the important
role that families play in supporting the person with cancer, and the significant impact
that the cancer has on the families well-being, requires the system to refocus our
attention to supporting the family as well as the individual with cancer. Little research
exists that can guide healthcare professionals in understanding how best to support
families living with cancer that is incurable but treatable.
252
WHAT IS THE PURPOSE OF THE STUDY?
The purpose of this research is to build knowledge about the individual and family‘s
experience of living with cancer as a chronic disease. By offering a glimpse into the
complexities that families cope with, this research will identify ways healthcare
professionals could support families better on their difficult journey with cancer.
WHAT WOULD I HAVE TO DO?
Family members will be invited to share their experiences of living with ongoing
treatments to control cancer within their families. Families can be interviewed
together or separate, or both. The goal of each interview will be hear the patient and
family‘s interpretation of their own experience. Conversations will take place in a
quiet, private environment that is mutually agreed on. The interviews will be
conducted at the family‘s convenience. Each interview will take about one hour and
will be audio-recorded. During the interview the researcher will take the occasional
note with permission. Depending on the family members preference there may be
more than one interview.
WHAT ARE THE RISKS?
In this type of research there is always a degree of risk. There is no way to know
what is going to come up in conversation, especially when the purpose of the
interview is to hear the unique experiences of family members. Sharing these
experiences may bring forth painful memories or highlight fears for the future. Each
participant, as a family member of a patient at the Tom Baker Cancer Center or as the
patient them self, has access to support from the Psychosocial Department at no
expense, via self-referral. The telephone number for the Psychosocial Department is
(403) 521-3553. If the participant is not a blood relative of the cancer patient, but is
considered a primary caregiver, they also have access to the Tom Baker Psychosocial
Department services. If the participant is not a blood relative, and is not a primary
caregiver of the cancer patient, and require psychosocial support as a result of
participating in a research interview they will be directed to the South Calgary Health
Clinic, Walk-in Therapy Clinic (ph. # 403-943-9374), which requires no appointment
or referral to access psychosocial counseling.
If participants in this study find the interview process too emotionally painful, a
moment will be offered to compose them self, and if that is not adequate the interview
may be stopped and rescheduled. The researcher will follow up with key family
members one week after the interview to inquire if there are any concerns within the
family regarding the interview process and discussions. Again support will be offered
from the psychosocial department or South Calgary Health Centre.
253
WILL I BENEFIT IF I TAKE PART?
Speaking about one‘s experience can help family members make sense of their own
journey with cancer as well as bring awareness of what other members of the family
may be experiencing. Speaking this aloud can begin a process of understanding and
finding meaning in one‘s own life, and actually may serve in the long run to improve
communication, reduce the isolation, and improve coping within the family.
Participation also holds the opportunity to help others in the future. More and more
families are finding themselves living with cancer as a chronic experience due to
ongoing non-curative treatments. Participation in this study could offer personal
satisfaction in knowing that you contributed to a deeper understanding this complex
experience.
If you agree to participate in this study there may or may not be a direct medical
benefit to you or your family member. The cancer treatments of the family member
with cancer will not be affected by participation in the study and there is no guarantee
that this research will help your family. The information we get from this study may
help us to provide better care in the future for patients and their families living with
chronic cancer.
DO I HAVE TO PARTICIPATE?
You do not have to participate. This is a voluntary study. There will be no negative
implications or consequences to the care you receive if you do not choose to
participate. Consent will be ongoing, allowing the participant to withdraw at any
time from the study. It must be noted though that due to the nature of hermeneutic
research, once the analysis phase is initiated the ability of the researcher to totally
removal your interview data or the resulting different understanding that the
researcher has gained will be impossible.
WHAT ELSE DOES MY PARTICIPATION INVOLVE?
Your participation does not involve any other commitments.
WILL I BE PAID FOR PARTICIPATING, OR DO I HAVE TO PAY FOR
ANYTHING?
Participants will not be paid for participating. If the interview location selected
necessitates paying for parking, the researcher will cover this expense.
WILL MY RECORDS BE KEPT PRIVATE?
Participants are assured that all information will be kept confidential. All information
will be kept on a password protected computer, and after the research is completed all
files will be transferred to an external memory device that will be stored in a locked
cabinet for seven years with all paper documents related to this research study. Only
254
members of the research committee and the University of Calgary Conjoint Health
Ethics Research Board will be able to see the data. As per Alberta privacy rules, after
12 years all data will be destroyed.
Anonymity is of particular difficulty in this research proposal as the sample size is
small, and the use of multiple direct quotes in the final research report may identify
the patient or family member through their experience, even if their names are
withheld. Therefore a promise of strict anonymity can not be guaranteed. Due to the
highly personal nature of the data and the central focus of this research being to
articulate the individual and family experience, attempts to remove any possibility of
recognizing an experience or event from the reported data would compromise the
results of this research. Further, there is the potential for parts of this research to be
published. Names will be altered where necessary to protect as much as possible the
identity of all participants. The use of personal demographics will be limited in the
final report and all subsequent publications.
IF I SUFFER A RESEARCH-RELATED INJURY, WILL I BE
COMPENSATED?
In the event that you suffer injury as a result of participating in this research, no
compensation will be provided to you by the University of Calgary, Alberta Health
Services or the Researchers. You still have all your legal rights. Nothing said in this
consent form alters your right to seek damages
SIGNATURES
Your signature on this form indicates that you have understood to your satisfaction
the information regarding your participation in the research project and agree to
participate as a subject. In no way does this waive your legal rights nor release the
investigators or involved institutions from their legal and professional responsibilities.
You are free to withdraw from the study at any time without jeopardizing your health
care. If you have further questions concerning matters related to this research, please
contact:
Dr. Shelley Raffin-Bouchal Or Linda Watson
If you have any questions concerning your rights as a possible participant in this
research, please contact The Director, Office of Medical Bioethics, University of
Calgary, at 403-220-7990.
255
Participant‘s Name
Signature and Date
Investigator/Delegate‘s Name
Signature and Date
Witness‘ Name
Signature and Date
The University of Calgary Conjoint Health Research Ethics Board has approved this
research study.
A signed copy of this consent form has been given to you to keep for your records
and reference.
256
Appendix D: Consent Form—Child
TITLE:
Navigating the flux: Understanding the experience of families living
with incurable but treatable cancer in their midst
SPONSOR: Social Science and Humanities Research Council of Canada
INVESTIGATORS:
Dr. Shelley Raffin-Bouchal RN, PhD Associate Dean, Graduate Studies,
Faculty of Nursing, University of Calgary
Linda C. Watson RN, MN, PhD(c), University of Calgary,
Faculty of Nursing
This consent form is only part of the process of informed consent. It should give you
the basic idea of what the research is about and what your child‘s participation will
involve. If you would like more detail about something mentioned here, or
information not included here, please ask. Take the time to read this carefully and to
understand any accompanying information. You will receive a copy of this form.
BACKGROUND
The life altering event of cancer affects many Canadians. In 2009, it was estimated
that over 171,000 Canadian‘s faced a new diagnosis of cancer and over 695,000
Canadians were living with cancer (Canadian Cancer Society [CCS], 2009). The
magnitude of cancer in today‘s society is staggering, but what these statistics do not
represent are the hundreds of thousands of Canadians who do not have a personal
diagnosis of cancer but suffer too, the family. Although family members do not
actually have to undergo surgery, chemotherapy, or radiation, their family ties cause
them to respond, struggle and experience firsthand the turmoil that cancer creates.
Due to medical advancements, new treatments exist that can control cancers for
longer periods of time than ever before. This is resulting in more people living longer
with cancer, even though it is not curable. Cancer is becoming a disease that can be
lived with, much the same as diabetes, renal failure and heart disease.
As more people live longer with cancer because of these ongoing non-curative
treatments, a growing number of families are faced with new and unfamiliar
challenges as they try to meet the needs of their loved one with cancer, as well as
manage the day to day responsibilities of their family life. Within healthcare our
focus is usually on the individual with the disease and its treatment, but the important
role that families play in supporting the person with cancer, and the significant impact
that the cancer has on the families well-being, requires the system to refocus our
attention to supporting the family as well as the individual with cancer. Little research
257
exists that can guide healthcare professionals in understanding how best to support
families living with cancer that is incurable but treatable.
WHAT IS THE PURPOSE OF THE STUDY?
The purpose of this research is to build knowledge about the individual and family‘s
experience of living with cancer as a chronic disease. By offering a glimpse into the
complexities that families cope with, this research will identify ways healthcare
professionals could support families better on their difficult journey with cancer.
WHAT WOULD MY CHILD HAVE TO DO?
Family members including children over 7 will be invited to share their experiences
of living with ongoing treatments to control cancer within their family. Families can
be interviewed together or separate, or both. The goal of each interview will be hear
the patient and family‘s interpretation of their own experience. Conversations will
take place in a quiet, private environment that is mutually agreed on. The interviews
will be conducted at the family‘s convenience. Each interview will take about one
hour and will be audio-recorded. During the interview the researcher will take the
occasional note with permission. Depending on the family members preference there
may be more than one interview.
WHAT ARE THE RISKS?
In this type of research there is always a degree of risk. There is no way to know
what is going to come up in conversation, especially when the purpose of the
interview is to hear the unique experiences of family members. Sharing these
experiences may bring forth painful memories or highlight fears for the future. Each
participant, as a family member of a patient at the Tom Baker Cancer Center or as the
patient them self, has access to support from the Psychosocial Department at no
expense, via self-referral. The telephone number for the Psychosocial Department is
(403) 521-3553. If the participant is not a blood relative of the cancer patient, but is
considered a primary caregiver, they also have access to the Tom Baker Psychosocial
Department services. If the participant is not a blood relative, and is not a primary
caregiver of the cancer patient, and require psychosocial support as a result of
participating in a research interview they will be directed to the South Calgary Health
Clinic, Walk-in Therapy Clinic (ph. # 403-943-9374), which requires no appointment
or referral to access psychosocial counseling.
If participants in this study find the interview process too emotionally painful, a
moment will be offered to compose them self, and if that is not adequate the interview
may be stopped and rescheduled. The researcher will follow up with key family
members one week after the interview to inquire if there are any concerns within the
family regarding the interview process and discussions. Again support will be offered
from the psychosocial department or South Calgary Health Centre.
258
ARE THERE ANY BENEFITS FOR MY CHILD?
Speaking about one‘s experience can help family members make sense of their own
journey with cancer as well as bring awareness of what other members of the family
may be experiencing. Speaking this aloud can begin a process of understanding and
finding meaning in one‘s own life, and actually may serve in the long run to improve
communication, reduce the isolation, and improve coping within the family.
Participation also holds the opportunity to help others in the future. More and more
families are finding themselves living with cancer as a chronic experience due to
ongoing non-curative treatments. Participation in this study could offer personal
satisfaction in knowing that you and your family have contributed to a deeper
understanding this complex experience.
If you agree for your child to participate in this study there may or may not be a direct
medical benefit to them. The cancer treatments of the family member with cancer will
not be affected by participation in the study and there is no guarantee that this
research will help your family. The information we get from this study may help us to
provide better care in the future for patients and their families living with chronic
cancer.
DOES MY CHILD HAVE TO PARTICIPATE?
Your child does not have to participate in this study. This is a voluntary study which
does not require child participation. There will be no negative implications or
consequences to the care you or your family will receive if your child does not choose
to participate. Consent will be ongoing, allowing any participant to withdraw at any
time from the study. It must be noted though that due to the nature of hermeneutic
research, once the analysis phase is initiated the ability of the researcher to totally
removal interview data or the resulting different understanding that the researcher has
gained will be impossible.
WHAT ELSE DOES MY CHILD’S PARTICIPATION INVOLVE?
Your child‘s participation does not involve any other commitments.
WILL WE BE PAID FOR PARTICIPATING, OR DO WE HAVE TO PAY
FOR ANYTHING?
Participants will not be paid for participating. If the interview location selected
necessitates paying for parking, the researcher will cover this expense.
WILL MY CHILD’S RECORDS BE KEPT PRIVATE?
Participants are assured that all information will be kept confidential. All information
will be kept on a password protected computer, and after the research is completed all
files will be transferred to an external memory device that will be stored in a locked
259
cabinet for seven years with all paper documents related to this research study. Only
members of the research committee and the University of Calgary Conjoint Health
Ethics Research Board will be able to see the data. As per Alberta privacy rules, after
12 years all data will be destroyed.
Anonymity is of particular difficulty in this research proposal as the sample size is
small, and the use of multiple direct quotes in the final research report may identify
the patient or family member through their experience, even if their names are
withheld. Therefore a promise of strict anonymity cannot be guaranteed. Due to the
highly personal nature of the data and the central focus of this research being to
articulate the individual and family experience, attempts to remove any possibility of
recognizing an experience or event from the reported data would compromise the
results of this research. Further, there is the potential for parts of this research to be
published. Names will be altered where necessary to protect as much as possible the
identity of all participants. The use of personal demographics will be limited in the
final report and all subsequent publications.
IF MY CHILD SUFFERS A RESEARCH-RELATED INJURY, WILL WE BE
COMPENSATED?
In the event that your child suffers injury as a result of participating in this research,
no compensation will be provided to you or your child by the University of Calgary,
Alberta Health Services or the Researchers. You still have all your legal rights.
Nothing said in this consent form alters your right to seek damages
260
SIGNATURES
Your signature on this form indicates that you have understood to your satisfaction
the information regarding your child‘s participation in the research project and agree
to their participation as a subject. In no way does this waive your legal rights nor
release the investigators, or involved institutions from their legal and professional
responsibilities. You are free to withdraw your child from the study at any time
without jeopardizing their health care. If you have further questions concerning
matters related to this research, please contact:
Dr. Shelley Raffin-Bouchal
Or
Linda Watson RN, PhD(c)
If you have any questions concerning your rights as a possible participant in this
research, please contact The Director, Office of Medical Bioethics, University of
Calgary, at 403-220-7990.
Parent/Guardian‘s Name
Signature and Date
Child‘s Name
Signature and Date
Investigator/Delegate‘s Name
Signature and Date
Witness‘ Name
Signature and Date
The investigator or a member of the research team will, as appropriate, explain to your child the
research and his or her involvement. They will seek your child‘s ongoing cooperation throughout the
study.
The University of Calgary Conjoint Health Research Ethics Board has approved this research study.
A signed copy of this consent form has been given to you to keep for your records and reference.
261
Appendix E: Recruitment Poster