Engaging patients using an interprofessional approach to shared decision making FEA

Engaging patients using an interprofessional
approach to shared decision making
by Dawn Stacey and France Légaré
ABSTRACT
Many cancer treatment and screening decisions are difficult given that they
rely upon patients’ informed preferences.
Interprofessional shared decision making
is when two or more health care professionals collaborate with a patient to reach an
agreed-upon decision. To support patients’
engagement in shared decision making,
effective interventions include patient decision aids and/or decision coaching. Patient
decision aids are typically written or video-based resources, while decision coaching
is provided by trained health care professionals who are supportive but non-directive. Both interventions make explicit the
decision, provide balanced information
on options based on the best available evidence, and help patients consider what matters most. The overall aim is to discuss how
oncology nurses can engage in an interprofessional approach to shared decision
making.
brachytherapy. The treatments have
similar survival outcomes, but risk of
long-term complications such as impotence, incontinence, and bowel irritation varies. Mr. Tremblay is uncertain
about what to choose. What is the best
option for him?
INTRODUCTION
Individuals diagnosed with cancer
often have multiple options and experience a sense of personal uncertainty
about a best course of action. This personal sense of uncertainty, also known
as decisional conflict, is often caused by
the need to weigh risks across options,
anticipated loss, concern about regret,
and/or challenge to personal life values (NANDA, 2005). For men with
prostate cancer, the chances of having
long-term complications such as impotence, incontinence, and bowel irritation depend on the option (see Table 1).
Therefore, the best option for men with
prostate cancer needs to be based on
the best available evidence and patients’
informed preferences. However, only
about half of patients are actually
involved in decision making and the
other half agree to the treatment recommended by their practitioner (Kiesler &
Auerbach, 2006). For prostate cancer
treatment, urologists typically recommend surgery, while radiation oncologists typically recommend radiation
therapy. Studies in Canada and the U.S.
found that many urologists and radiation oncologists provide unbalanced
information on options in favour of
Table 1: Low-risk prostate cancer options, benefits and harms (PSA<10; Gleason < 6)
(Division of Cancer Care and Epidemiology, 2013)
No treatment
CASE STUDY
Surgery
External
Radiation
Brachytherapy
5 out of
100
5 out of
100
5 out of 100
100 out of 100 88 out of
100
99 out of
100
95 out of 100
<1 out of
1,000
<1 out of 1,000
Mr. Tremblay is a healthy 65-yearold man diagnosed with localized
prostate cancer. He received his prostate biopsy results and was told that
he has several options each with different long-term complications. He
can choose active surveillance or treatment. Treatment options include surgery, external radiation therapy, or
POSSIBLE BENEFITS:
Death due to treatment
Not applicable
ABOUT THE AUTHORS
1-3 out of
1,000
Impotent due to treatment
Not applicable
30-60 out 40-60
40-60 out of
of 100*
out of 100 100
Incontinence: leak enough
urine to need to wear a pad
0 out of 100
10 out of
100
1 out of
100
4 out of 100
No bladder control: need to
wear an adult diaper or use a
catheter, or have surgery
0 out of 100
2 out of
100
0 out of
100
1 out of 100
Bowel problems: bothersome 0 out of 100
chronic diarrhea and blood in
the stool
0 out of
100
2-5 out of 1 out of 100
100
Dawn Stacey, RN, PhD, CON(C),
Professor, School of Nursing,
University of Ottawa
[email protected]
France Légaré, MD, PhD, CCFP,
FCFP, Professor, Faculty of
Medicine, Laval University
[email protected]
Address for correspondence: Dawn
Stacey, 451 Smyth Road (RGN 1118),
Ottawa, ON K1H 8M5
613-562-5800 ext 8419
[email protected]
Death due to prostate cancer 7 out of 100
(over 15 years)
Full bladder control
POSSIBLE HARMS:
*rates depend on type of surgery
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Revue canadienne de soins infirmiers en oncologie
455
FEATURES/Rubriques
CANO conference feature
FEATURES/Rubriques
their own expertise and they are not able
to correctly guess men’s preferences
(Fowler et al., 2000; Pearce, Newcomb
& Husain, 2008). Practice variations
in age-standardized rates of surgery for
prostate cancer range from 32% to 57%
across Ontario, and this variation may
be unwarranted given the best option
depends on men’s informed preferences
(Cancer surgery in Ontario: ICES Atlas,
2008; Wennberg, 2002). The experience of men with prostate cancer is similar to that of men and women facing
cancer treatment or screening decisions
for other types of cancer.
The overall aim of this article is to
discuss how oncology nurses can better support patients to achieve quality decisions using an interprofessional
approach to shared decision making.
More specifically, we will define an interprofessional approach to shared decision making, explore tools for oncology
nurses to use, and discuss ways of implementing these approaches and tools into
clinical practice. Finally, we will demonstrate how oncology nurses can use these
approaches and tools in the case exemplar of Mr. Tremblay who has learned
that he has localized prostate cancer.
INTERPROFESSIONAL
APPROACH TO SHARED
DECISION MAKING
Shared decision making is the process by which a health care choice is
made between a patient and a health
professional. Elements of shared decision making include being informed
on the options, clarifying patients’ values/preferences, and making or deferring the decision (Makoul & Clayman,
2006). Ideally, the decision is also
informed using unbiased information
with mutual agreement on the best
course of action. Shared decision making has been described as the crux of
patient-centred care that aims to ensure
all care is “respectful of and responsive to individual patient preferences,
needs and values and ensuring that
patient values guide all clinical decisions” (Committee on Quality of Health
Care, 2001; Weston, 2001). A synthesis of studies has reported that when
patients are involved in decision making, they have improved quality of life,
better sense of control over their illness,
enhanced symptom relief, and experience less fatigue, depression, and illness concerns (Hibbard & Greene, 2013;
Kiesler & Auerbach, 2006). However,
patients are very seldom engaged in
decisions about their health despite
that most would prefer a more active
involvement in decision making (Couet
et al., 2013; Kiesler & Auerbach, 2006).
Interprofessional shared decision
making is when two or more health
care professionals collaborate with the
patient to reach an agreed-upon decision (Légaré, Stacey, Gagnon, et al.,
2011; Légaré, Stacey, Pouliot, et al., 2011).
Interprofessional collaborations build
on the strengths of each profession’s
Figure 1: Interprofessional Shared Decision Making Model (IP-SDM)
456
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Revue canadienne de soins infirmiers en oncologie
Tips for nurses. Oncology nurses are
key members of the interprofessional
team and often influential in the shared
decision making process when patients
are facing preventative, screening or
treatment decisions. Reflecting upon
your role in shared decision making
may help you be more aware of how
you can better support patients facing these tough cancer decisions. Are
patients aware that there is more than
one option (e.g., including status quo)?
Are your preferences or those of other
team members influencing the patients
or are you considering the patients’ values and preferences? Who on the health
care team is responsible for coaching
the patient into the decision making
process and, thus, assuring the patient
understands his/her options? What is
the typical process by which decisions
are made? Are patients experiencing
decisional conflict? (see Table 2).
TOOLS TO FACILITATE
SHARED DECISION
MAKING: PATIENT
DECISION AIDS
Patient decision aids and decision
coaching are tools that can facilitate
the process of shared decision making.
Patient decision aids are defined as, at
a minimum, making explicit the decision, providing evidence-based information on options, benefits and harms,
and helping patients clarify their values
for outcomes of options to reach a preferred option (Stacey et al., 2014). They
may also include probabilities indicating the chances of benefits and harms,
personal stories, and guidance in the
steps of decision making. Formats for
patient decision aids typically include
printed materials, videos, and/or computer-based interactive programs. They
are designed to be used either in preparation for practitioner consultation or
for use with a practitioner during the
consultation. While the main goal of
educational materials is to improve
knowledge, patient decision aids support progress in decision making.
Findings from a systematic review
evaluating the effectiveness of decision aids for people facing treatment
or screening decisions revealed 52 of
115 (45%) randomized controlled trials
were focused on oncology decisions
(Stacey et al., 2014). Topics include:
a) screening for prostate, colon, cervix,
and breast cancers; b) genetic testing
for breast, ovarian, and colon cancer;
c) surgical treatment including breast
cancer (e.g., lumpectomy versus mastectomy), prostate cancer (e.g., prostatectomy versus radiation therapy versus active surveillance), prophylactic
mastectomy, orchiectomy for advanced
prostate cancer; and d) chemotherapy
or chemoprevention. Rigorous evaluation of patient decision aids indicates
that patients who use decision aids have
improved quality of decisions, as evidenced by enhanced knowledge, a more
accurate understanding of the chances
of benefits and harms, and improved
match between patients’ values and
the chosen option (Stacey et al., 2014).
They reduce overuse of options that
are not beneficial for the majority of
those using it and they have a tendency
Table 2: SURE test to screen for decisional conflict (Légaré et al., 2010)
English
French
Sure
Do you feel sure about the best
choice for you?
Êtes-vous certain de ce qui constitue le
meilleur choix pour vous?
Uninformed
Do you know the benefits and
risks of each option?
Est-ce que vous connaissez les bénéfices
et risques de chacune des options?
Risk/Benefit Are you clear about which
Ratio
benefits and risks matter most
to you?
Encourage
Avez-vous le sentiment de savoir ce qui
est le plus important pour vous à l’égard
des risques et bénéfices?
Do you have enough support and Avez-vous suffisamment de soutien afin
advice to make a choice?
de faire votre choix?
Canadian Oncology Nursing Journal • Volume 25, Issue 4, Fall 2015
Revue canadienne de soins infirmiers en oncologie
457
FEATURES/Rubriques
approach to care delivery such that professionals work within their full scope
of practice and without intentional
duplication of services. According to
the Interprofessional Shared Decision
Making model (Figure 1), the process of
shared decision making involves: 1) making explicit the decision to be made; 2)
exchanging information on options,
benefits, and harms; 3) discussing values for outcomes of options and patients
preferences; 4) determining feasibility
of the options; 5) expressing a preferred
choice; 6) choosing an option; and
7) implementing the chosen option. This
model was built by an interprofessional
and international team upon findings
from a theory analysis of previous conceptual models (Légaré, Stacey, Pouliot
et al., 2011; Stacey, Légaré, Pouliot,
Kryworuchko & Dunn, 2010).
The interprofessional shared decision making model is composed of two
main axes, with the vertical axis representing the shared decision making
process and the horizontal axis representing the individuals involved in
the process (Légaré, Stacey, Gagnon
et al., 2011; Légaré, Stacey, Pouliot et
al., 2011). There are two main ‘teams’:
the patient/family team and the interprofessional team that may include one
member assuming the decision coaching role. Ultimately, the two teams
combine to form one. There are four
assumptions underlying the model.
First, involving patients in shared decision making is essential for reaching
decisions that are informed and based
on individual patient values. Second,
by the interprofessional team having
a common understanding of the elements of the shared decision making
process and recognizing the influence
of various individuals on the process,
there will be improved success in reaching a shared decision. Third, achieving
an interprofessional approach to shared
decision making may occur synchronously in the example of a family conference in the intensive care unit but, more
often, occurs asynchronously. Fourth,
family or significant others are important stakeholders involved or implicated
by the decision and their values and
preferences may not be consistent with
the patient.
FEATURES/Rubriques
to increase uptake of options that are
beneficial for the majority of patients
using it, thus fostering “optimal use” of
health-related options. As well, patients
are more engaged in the decision-making process with less decisional conflict and improved communication with
their practitioner.
Tips for nurses. Are you using patient
decision aids in your practice? If not, the
easiest way to find patient decision aids is
to use an internet search engine. The A
to Z Inventory is the largest international
collection of publicly available patient
decision aids catalogued by The Ottawa
Hospital Research Institute (http://decisionaid.ohri.ca/AZinvent.php). You can
search for a specific topic or browse the
full inventory. Each patient decision aid
is summarized, quality assessed using
the International Patient Decision Aid
Standards (IPDAS), and has a direct link
for obtaining access. If you don’t find a
patient decision aid for a specific clinical situation you can use a generic one,
the Ottawa Personal Decision Guide that
you can populate with specific information http://decisionaid.ohri.ca/decguide.
html. Once you find a patient decision
aid, are the options included relevant to
your patient population and/or clinical
setting?
TOOLS TO FACILITATE
SHARED DECISION
MAKING: DECISION
COACHING
A decision coach is a trained facilitator who is non-directive and facilitates progress in decision making by
providing support that aims to develop
patients’ skills in thinking about the
options, preparing for discussing the
decision in a consultation with their
practitioner, and implementing the chosen option (O’Connor, Stacey, & Légaré,
2008; Stacey et al., 2013). More specifically, decision coaches: a) assess
patients’ decision making needs; b) provide information on options, benefits
Table 3: Myths about (interprofessional) shared decision making
Myth
Fact
It’s the latest fashion! In 1959, the modern physician was described as sharing decisions
with their patients (Menzel, Coleman, & Katz, 1959).
We already do it!
There is always room for improvement. A review of 33 studies
showed an average of 23 out of 100 elements of shared decision
making occurring in current clinical practice (Couet et al., 2013).
Patients prefer to
make decisions on
their own!
It takes at least two people for shared decision making (Charles,
Gafni, & Whelan, 1997).
Patients don’t want to Over 90% want to be involved in shared decision making, but only
be involved!
about 50% are involved and those who are more vulnerable are less
involved in sharing decisions = systematic bias (Kiesler & Auerbach,
2006)
Not everyone can
do it!
Implementing interventions to facilitate shared decision making
is better than doing nothing. Those interventions focused on both
the interprofessional team and patient are superior (Légaré et al.,
2014)
It takes too long!
In studies of patient decision aids, seven studies showed no
difference in length of time during the consultation, 1 study was
longer, and one study was shorter (Stacey et al., 2014)
Using shared decision No, but it will improve the process of decision making and the
making will solve all
outcomes (Stacey et al., 2014)
the problems!
458
and harms (verbally or using a patient
decision aid); c) assess patients’ understanding; d) clarify patients’ values on
features and outcomes of options; and e)
may screen to determine patients’ needs
relevant to implementing the chosen
option (e.g., motivation, self-confidence,
barriers, commitment). Coaching may
be provided face to face or via telephone.
Members of the interprofessional team
who may assume the decision coaching
role are diverse because decision coaching is not defined a priori by a specific
profession and, thus, can be undertaken
by nurses, genetic counsellors, social
workers, psychologists, and pharmacists, etc.
A review of 10 rigorous studies
showed that when decision coaching
was used alone or with a patient decision aid, patients were more knowledgeable, had higher perceived involvement
in decision making and were more satisfied with the decision-making process
than those who did not have coaching
or those who only had a patient decision
aid (Stacey et al., 2012). Nurses trained
as decision coaches describe their
experiences as more likely to recognize
the need for providing decision support
to patients, better prepared with types of
questions to explore with the patients,
and overall feeling more skilled in helping patients (Stacey, Pomey, O’Connor
& Graham, 2006).
Tips for nurses. To learn more about
decision coaching and shared decision
making, there is an online program
“Ottawa Decision Support Tutorial”
(http://decisionaid.ohri.ca/ODST).
It
is available free of charge and provides
a certificate of completion that can be
used as evidence of continuing education. The Ottawa Personal Decision
Guide is a two-page decision aid that
can be used for coaching patients
through the process of decision making for any decision. As well, there is
a script for standardizing the way it
is used and a video demonstrating its
use. Nurses also learn through reflective practice and the Decision Support
Analysis Tool (DSAT-10) can be used to
self-appraise the quality of your decision coaching (Stacey, Taljaard, Drake &
O’Connor, 2008).
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FEATURES/Rubriques
IMPLEMENTATION OF
INTERPROFESSIONAL
SHARED DECISION MAKING
Although there is good evidence
to support the need to better engage
patients in shared decision making,
many barriers interfere (Légaré &
Thompson-Leduc, 2014). Interestingly,
most of these barriers are, in fact, myths
to be dispelled (see Table 3). To overcome barriers, patients from 44 studies have specifically suggested that
nurses should explain information on
options, provide support by listening
to patient preferences, and then advocate for patients by sharing their preferences with physicians (Joseph-Williams,
Elwyn & Edwards, 2014).
Findings from a synthesis of 39 studies showed that the most successful
approach to implementing shared decision making used strategies that targeted both health care professionals and
patients (Légaré et al., 2014). Health
care professionals were more likely
to use shared decision making if they
received training. Patients were more
likely to influence shared decision making when prepared with patient decision aids. In any case, in trials where
both training of providers and decision
aids for patients were used, it appears
that implementation of shared decision
making was more successful than when
only one or the other was used.
Tips for nurses. To better support
patient engagement in making decisions within clinical practice, oncology
nurses can start by identifying the common decisions and determine at what
point these decisions occur within the
process of care. Are there any relevant
patient decision aids that could be used?
Is there a need to enhance the shared
decision-making knowledge and skills
of interprofessional health care team
members? Measuring patients’ knowledge or decisional conflict leaving the
consultation has stimulated the need
to improve the way patients are supported to share decisions (The Health
Foundation, 2013; Légaré et al., 2010).
Another option is to encourage patients
to ask three questions (Shepherd et al.,
2011): 1) What are my options? 2) What
Figure 2: Prostate cancer treatment planning preference report
are the possible benefits and harms of
those options? 3) How likely are the benefits and harms of each option to occur?
CASE EXEMPLAR:
MR. TREMBLAY
Mr. Tremblay is a healthy 65-year-old
man diagnosed with localized prostate
cancer. He has several options including active surveillance, surgery, external radiation therapy, or brachytherapy.
Mr. Tremblay is uncertain about what
to choose. To support men like Mr.
Tremblay, we implemented an interprofessional approach to shared decision
Canadian Oncology Nursing Journal • Volume 25, Issue 4, Fall 2015
Revue canadienne de soins infirmiers en oncologie
making into the prostate cancer clinical
pathway at The Ottawa Hospital. The
following outlines the new process and
strategies used.
1. Based on the care map, the urologist informed Mr. Tremblay of having localized prostate cancer based
on his biopsy results and told him
that he has several options. As part
of routine practice, all patients
complete a quality-of-life survey
to assess their overall quality of
life (Hurst et al., 1997) and prostate-specific indicators including
current sexual function, urinary
function, and bowel function using
459
FEATURES/Rubriques
the expanded prostate cancer index
composite (EPIC) (Wei, Dunn,
Litwin, Sandler & Sanda, 2000).
Their quality of life is reassessed
periodically after treatment.
2. The care map was changed to provide
equal opportunity for Mr. Tremblay to
receive a consultation with a radiation
oncologist and urologist.
3. The nurse assessed his supportive
care needs, provided him with general patient education materials, and
gave him a patient decision aid to
review at home. The patient decision
aid was chosen following a review of
seven that were publicly available in
the A to Z inventory (http://decisionaid.ohri.ca/AZinvent.php). The interprofessional team reviewed their
quality scores and discussed relevance to their program.
4. To clarify Mr. Tremblay’s values and
verify his knowledge of the options,
the decision quality survey for prostate cancer was also sent home
with him to complete after using
the patient decision aid. This survey has nine value statements rated
on a scale from 0 not important to
10 very important and six multiple
choice knowledge questions (Fowler,
Gallagher, Drake & Sepucha, 2013).
5. On the return visit (and occasionally by telephone between visits),
the nurse reviewed Mr. Tremblay’s
understanding of his options (see
Table 1), corrected misconceptions,
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ACKNOWLEDGEMENTS
This paper was presented at the Canadian
Association of Nurses in Oncology 2014
conference in Quebec City. Drs. Légaré
and Stacey completed their doctoral
studies together under the supervision of
Emeritus Professor Annette O’Connor
at the University of Ottawa. Dr. Légaré’s
doctoral research focused on enhancing
shared decision making in primary care
and Dr. Stacey’s research focused on
enhancing decision coaching provided by
nurses working at a provincial call centre.
On completion of their doctorates, they
have been collaborating to develop the
Interprofessional Shared Decision Making
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series of studies.
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