Examining chronic care patient preferences for involvement in health-care decision making: The case of Parkinson's disease patients in a patient-centred clinic

Abstract

Background
Patient‐centred care is a recommended model of care for Parkinson's disease (PD). It aims to provide care that is respectful and responsive to patient preferences, values and perspectives. Provision of patient‐centred care should entail considering how patients want to be involved in their care.

Objective
To understand the participation preferences of patients with PD from a patient‐centred care clinic in health‐care decision‐making processes.

Design, setting and participants
Mixed‐methods study with early‐stage Parkinson's disease patients from a patient‐centred care clinic. Study involved a modified Autonomy Preference Index survey (N=65) and qualitative, semi‐structured in‐depth interviews, analysed using thematic qualitative content analysis (N=20, purposefully selected from survey participants). Interviews examined (i) the patient preferences for involvement in health‐care decision making; (ii) patient perspectives on the patient–physician relationship; and (iii) patient preferences for communication of information relevant to decision making.

Results
Preferences for participation in decision making varied between individuals and also within individuals depending on decision type, relational and contextual factors. Patients had high preferences for communication of information, but with acknowledged limits. The importance of communication in the patient–physician relationship was emphasized.

Discussion
Patient preferences for involvement in decision making are dynamic and support shared decision making. Relational autonomy corresponds to how patients envision their participation in decision making. Clinicians may need to assess patient preferences on an on‐going basis.

Conclusion
Our results highlight the complexities of decision‐making processes. Improved understanding of individual preferences could enhance respect for persons and make for patient‐centred care that is truly respectful of individual patients’ wants, needs and values.

Full text

Health Expectaons 2016; 1–10 wileyonlinelibrary.com/journal/hex
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© 2016 The Authors. Health Expectaons
Published by John Wiley & Sons Ltd.
Accepted: 10 August 2016
DOI: 10.1111/hex.12497
Abstract
Background: Paent- centred care is a recommended model of care for Parkinson’s
disease (PD). It aims to provide care that is respecul and responsive to paent prefer-
ences, values and perspecves. Provision of paent- centred care should entail consid-
ering how paents want to be involved in their care.
Objecve: To understand the parcipaon preferences of paents with PD from a
paent- centred care clinic in health- care decision- making processes.
Design, seng and parcipants: Mixed- methods study with early- stage Parkinson’s
disease paents from a paent- centred care clinic. Study involved a modied
Autonomy Preference Index survey (N=65) and qualitave, semi- structured in- depth
interviews, analysed using themac qualitave content analysis (N=20, purposefully
selected from survey parcipants). Interviews examined (i) the paent preferences for
involvement in health- care decision making; (ii) paent perspecves on the paent–
physician relaonship; and (iii) paent preferences for communicaon of informaon
relevant to decision making.
Results: Preferences for parcipaon in decision making varied between individuals
and also within individuals depending on decision type, relaonal and contextual fac-
tors. Paents had high preferences for communicaon of informaon, but with ac-
knowledged limits. The importance of communicaon in the paent–physician
relaonship was emphasized.
Discussion: Paent preferences for involvement in decision making are dynamic and
support shared decision making. Relaonal autonomy corresponds to how paents
envision their parcipaon in decision making. Clinicians may need to assess paent
preferences on an on- going basis.
Conclusion: Our results highlight the complexies of decision- making processes. Improved
understanding of individual preferences could enhance respect for persons and make for
paent- centred care that is truly respecul of individual paents’ wants, needs and values.
KEYWORDS
bioethics, decision making, Parkinson’s disease, paent preferences, paent-centred care,
paent–physician relaonship, relaonal autonomy
1Neuroethics Research Unit, Instut de
recherches cliniques de Montréal, Montreal,
QC, Canada
2Division of Experimental Medicine and
Biomedical Ethics Unit, McGill University,
Montreal, QC, Canada
3Department of Neurology and
Neurosurgery, McGill University, Montreal,
QC, Canada
4McGill University Health Centre, Montreal,
QC, Canada
5Department of Medicine, Université de
Montréal, Montreal, QC, Canada
6Department of Social and Prevenve
Medicine, Université de Montréal, Montreal,
QC, Canada
Correspondence
Eric Racine, PhD, Neuroethics Research
Unit, Instut de recherches cliniques de
Montréal, Montreal, QC, Canada.
Email: eric.racine@ircm.qc.ca
ORIGINAL RESEARCH PAPER
Examining chronic care paent preferences for involvement in
health- care decision making: the case of Parkinson’s disease
paents in a paent- centred clinic
Natalie Zizzo MSc1,2 | Emily Bell PhD1,3 | Anne-Louise Lafontaine MD, MSc, FRCPC3,4 |
Eric Racine PhD1,2,3,5,6
This is an open access arcle under the terms of the Creave Commons Aribuon License, which permits use, distribuon and reproducon in any medium,
provided the original work is properly cited.

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1 | INTRODUCTION
Parkinson’s disease (PD) is a chronic neurodegenerave disease, aect-
ing an esmated 7–10 million individuals worldwide.1 It causes pro-
gressive impairments in motor control and oen includes psychiatric
and cognive comorbidies in paents as the disease advances. There
has been a call for the treatment of PD to be delivered within a paent-
centred model of care.2 Although there are many denions of paent-
centred care (PCC), it has been broadly conceived of as “respecul of
and responsive to individual paents’ preferences, needs, and values,”3
and it aims to have paent values guide clinical decision making.3 PCC is
endorsed by both the Instute of Medicine3 and the Canadian Medical
Associaon4 and has been shown to have instrumental value, with
tangible benets that include beer health outcomes.5,6 Furthermore,
PCC has been supported from an ethical standpoint;7 it is viewed as an
extension of the principles of respect for persons and for autonomy.
However, implemenng PCC can prove to be challenging, as
there is a current lack of understanding on the perspecves, values
and preferences of paents with PD for care.8–11 In parcular, how
paents want to be involved in decision- making processes remains
unclear.12–14 In fact, invesgaons into the variability of paent
preferences for the decision- making process show that physicians
misjudge paent desire for involvement in decision making.13 This re-
search points to a need to improve the understanding of PD paent
preferences for involvement in care. While there has been a great deal
of quantave invesgaons into these preferences, the qualitave
literature is far more sparse15 and paent preferences for involvement
in care have not been invesgated, to our knowledge, in a chronic care
neurodegenerave populaon.
Consequently, we conducted both quantave surveys and qual-
itave interviews with PD paents in a PCC clinic to invesgate their
preferences for involvement in health- care decision- making pro-
cesses. In our analysis, we draw on the analyc stages of decision mak-
ing proposed by Charles et al.,16 including (i) informaon exchange,
(ii) deliberaon and (iii) decisional control, and consider how paent
preferences for involvement may vary with each of these stages. Our
results reveal the complexity of decision- making preferences in a PD
populaon and can provide insight for the provision of PCC to other
chronic illness and neurodegenerave populaons.
2 | METHODS
The sample populaon in this study consisted of early- stage PD pa-
ents from a PCC movement disorder clinic. Paents who were not
procient in English or French, or who had cognive decits based
on validated cognive tests (Montreal Cognive Assessment) on le,
were excluded, as these factors could impact their ability to be in-
volved in decision making. All appropriate candidates, as idened by
medical sta at the clinic, were approached to complete a modied
version of the Autonomy Preference Index (API).17 Survey parcipants
self- idened whether they were interested in parcipang in a fol-
low- up qualitave semi- structured interview. Interview parcipants
were selected by maximum variaon sampling, a form of purposeful
sampling, to maximize the diversity of parcipants based on age, gen-
der and educaonal background.18 Interviews were conducted ap-
proximately 4–16 weeks aer the compleon of surveys. The authors’
instuonal research ethics boards approved the research protocol,
and all parcipants gave their free and informed wrien consent.
2.1 | Quantave methods
Parcipants were surveyed in their preferred language (English or
French) using a modied version of the API. The API consists of (i)
a six- item decision- making scale, which measures general desire to
parcipate in medical decisions; (ii) an eight- item informaon scale,
which measures desire for medical informaon; and (iii) ve vignees,
which measures desire to parcipate in medical decisions in specic
clinical scenarios. For the decision- making and informaon scales,
summed scores were transformed to a range of 0–100, where a higher
score indicates higher preferences for decision- making involvement
and for receipt of informaon, respecvely. The vignees featured
in the API are designed to elicit decision- making preferences in the
context of dierent levels of illness severity. The mild (upper respira-
tory tract illness) and moderate (hypertension) disease vignees came
from the standard API and were kept because of their applicability
and relevance. Three novel vignees were generated to represent
the severe disease in the specic context of PD to ensure greater rel-
evance to our parcipants. The PD- specic vignees were developed
in collaboraon with an interdisciplinary PD medical team to feature
PD progression (mild worsening of symptoms, moderate worsening of
symptoms, new appearance of psychological symptoms). In each vi-
gnee, parcipants indicated their preferred decision- maker for three
decisions (decision- making scores: 1 = doctor alone; 2 = mostly the
doctor; 3 = the doctor and you; 4 = mostly you; 5 = you alone). For
each vignee, the decision- making scores were summed and trans-
formed to a range of 0–10, where a higher score indicated greater
desire for involvement in the decision- making process.
Descripve stascs (means, frequencies, range and standard de-
viaon) were calculated for the sample on each scale of the API and for
each vignee. The inuence of demographic factors (age, gender, level
of educaon) and medical informaon preferences (informaon scale
of the API) on decision- making preferences as a nal outcome mea-
sure (decision- making scale of the API) was examined using univariate
and mulvariable logisc regression analyses. Bivariate relaonships
between the transformed decision- making preference scores on
the ve vignees were examined using Pearson’s correlaon analy-
sis. Repeated- measures ANOVA mixed- model approach assessed
whether the vignees had an eect on the nal transformed decision-
making score on this part of the survey. Pre- planned post hoc analysis
compared the average decision- making scores on the general medical
vignees to each of the three PD vignees. The average decision-
making scores of the three PD- specic medical scenarios were also
compared. All stascal analyses were carried out using SAS 9.4 sta-
scal soware. For all inferenal analyses, the probability of type 1
error was a priori xed at alpha=0.05.

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2.2 | Qualitave methods
We aimed to interview approximately 20 paents, as we expected this N
was sucient for theorecal saturaon (i.e. the point at which there was
no signicant new data). Indeed, this N was consistent with similar quali-
tave research,11,19,20 and an N of 20 yielded suciently dense data
with diverse experiences and perspecves represented. If there was a
partner or another individual who regularly aended clinical appoint-
ments with the paent, the paent was invited to include this person in
the interview as this allowed us to acquire ecologically valuable data (i.e.
a more natural representaon of the decision- making process).21
Interviews were semi- structured with open- ended quesons cen-
tred on our research aim. We examined (i) paent preferences for in-
volvement in health- care decision making; (ii) paent perspecves on
the paent–physician relaonship, which is central to health- care de-
cision making; and (iii) paent preferences for the communicaon of
informaon. Our quesons on parcipaon preferences did not spec-
ify the types of health- care decisions, which allowed paents to inter-
pret the queson to the types of decisions most representave of their
experience. We also inquired about two hypothecal situaons: one
in which there is a conict between paent and physician and one in
which the paent might be excluded from decision making. When pa-
ents’ partners were present, quesons were modied to include their
perspecves.
Interviews were conducted face- to- face, and were held at the pri-
mary author’s research instuon or at the specialist clinic, according
to the paent’s preference. The interviews were conducted in English
or French, audio- recorded, transcribed verbam by an external profes-
sional transcripon service and veried by a team member. A technical
error resulted in failure to record one interview; in this case, detailed
notes were taken immediately aer the interview and veried by the
parcipant for their accuracy, and then, these notes were used for
analysis.
We analysed (“coded”) interview transcripts using themac quali-
tave content analysis.22 An inial coding guide was developed aer
review of transcripts and a team discussion. This coding guide was pi-
loted on a diversied sample of interviews (N=5, or 25% of total sam-
ple). Pilot results led us to revise the coding guide, update coding of
the inial sample and code the remainder of interviews. The coding
guide contained denions and rules for the applicaon of each code
to ensure rigour and thoroughness. Upon the compleon of coding, the
results were reviewed and some nodes were further analysed. The pri-
mary author conducted the interviews and coded all interviews; the
second author systemacally reviewed all coding. Disagreements be-
tween the coder and the reviewer were discussed to achieve consen-
sus, and the last author arbitrated outstanding disagreements. Coding
was supported by the QSR NVivo 9 qualitave analysis soware
package. The nal key themes for coding were as follows: (i) preferred
decision- making model (e.g. how should each individual be involved in
decision making?); (ii) qualies of a good paent–physician relaonship
(e.g. general features of a good relaonship, important qualies of a
paent and of a physician, values important to care); (iii) PD informaon
preferences (e.g. sources of and desire for informaon, limits to learning
informaon).
Qualitave content is summarized and direct quotes are used to
illustrate the perspecves of parcipants. Some quotes reported in
this study were translated from French to English by the primary au-
thor and veried by another bilingual team member (the last author).
Parcipant’s names and idenfying details have been removed to
protect condenality. Paents are idened in text by the leer P
followed by a number that was assigned sequenally as surveys were
completed. Paents’ partners share the same idener as the paent
but are dierenated by a prime symbol (e.g. PXX′), and the leer “I”
idenes the interviewer. Some quotes contain minor edits to enhance
readability.
3 | RESULTS
3.1 | Quantave results
3.1.1 | Parcipant demographics
Sixty- ve paents with PD completed the survey, 27 females (41.5%)
and 38 males (58.5%). The age range of parcipants was 39–85, with
a mean age of 68. Twenty- one parcipants (33.9%) had an educaon
that was equal to or less than a professional college degree, 20 parci-
pants (30.8%) had a bachelor’s degree and 24 paents had postgradu-
ate educaon (36.9%).
TABLE1 Distribuon of responses to statements describing decision- making preferences (% of parcipants responding)a
Strongly
disagree
Strongly
agree
Q1: The important medical decisions should be made by your doctor not you 33.9 6.2 23.1 15.4 21.5
Q2: You should go along with your doctor’s advice even if you disagree with it 29.2 16.9 20.0 16.9 16.9
Q3: When hospitalized you should not be making decisions about your own care 32.3 26.2 13.9 7.7 20.0
Q4: You should feel free to make decisions about everyday medical problems 6.2 7.7 23.1 18.5 44.6
Q5: If you were sick, as your illness became worse you would want your doctor
to take greater control
9.2 12.3 21.5 26.2 30.8
Q6: You should decide how frequently you need a check- up 27.7 16.9 30.8 7.7 16.9
aShaded cells indicate what would be the response aligning with a preference for greatest autonomy in medical decision making.

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ZiZZo et al.
3.1.2 | Decision- making preferences
The mean decision- making scale score was 62.8±16.6 out of a pos-
sible range of 0–100 (range: 20–97). Distribuons of responses to
statements on the decision- making scale are presented in Table 1. For
all quesons except Q5 and Q6, the highest percentage of parci-
pants chose the answer indicang the most autonomous preference.
Responses for quesons ve and six indicated that most parcipants
desired less autonomy in these scenarios; only two parcipants pre-
ferred high autonomy answers for both of these quesons.
3.1.3 | Informaon preferences
The mean informaon seeking scale score was 87.9±14.9 out of a
possible range of 0–100 (range: 28–100). The mode was 100, with 17
parcipants (26%) scoring the maximum on informaon preferences.
3.1.4 | Vignee decision- making preferences
Mean decision- making scores for each vignee are presented on a
possible range of 1–10 in Table 2. Decision- making scores in vignees
2 and 3, and vignees 3 and 4, were moderately correlated (vignees
2 and 3: r=.50, 95% CI [0.29; 0.66] P=<.0001; vignees 3 and 4:
r=.50, 95% CI [0.30; 0.67] P=<.0001). There was a signicant eect
of vignee score on decision- making scores, as measured through a
repeated- measures ANOVA (P<.001). When their means were com-
pared, there was a signicant dierence between decision- making
scores in the general medical vignees (vignees 1 and 2) and in each
of the PD- specic vignees (vignee 3 (esmate=1.10, 95% CI [0.74;
1.46], P=<.0001), vignee 4 (esmate=0.55 (95% CI [0.155; 0.937]),
P=.007) and vignee 5 (esmate=−1.18 (95% CI [−1.618; −0.736]),
P=<.0001). Signicant dierences were also observed in comparing the
means of decision- making scores between vignees 3, 4 and 5, with
decision- making scores increasing with disease severity (vignees 3
and 4 (esmate=−0.55 (95% CI [−0.910; −0.198]), P=.003); vignees 4
and 5 (esmate=−1.72 (95% CI [−2.216; −1.23], P=<.001); vignees 3
and 5 (esmate=−2.28 (95% CI [−2.773; −1.780], P=<.0001).
3.1.5 | Univariate and mulvariable logisc
regression analyses
We examined the inuence of four explanatory variables on preference
for decision- making scores (decision- making scale of the API) through
univariate and mulvariable logisc regression analyses. The four ex-
planatory variables were idened a priori and included age (connu-
ous variable), gender (M, F), educaon (≤professional college, bachelors
university, graduate) and API informaon scale score (connuous vari-
able). Listwise deleon was applied for all explanatory variables, result-
ing in the exclusion of one subject from regression analyses due to
missing age in the database. Thus, the linear regression models were
carried out on 64 parcipants. Overall, none of the factors reached sta-
scally signicant levels in the mulvariate or univariable models.
3.2 | Qualitave results
3.2.1 | Parcipant demographics
Twenty PD paent parcipants were interviewed, 10 males and 10
females. Parcipants were aged 50–77, with a mean age of 63. Fieen
interviews were conducted in English, and ve were conducted in
French. The average length of me parcipants were paents in the
specialist clinic was 3 years, with 6 months as the shortest me and
7 years as the longest. Seven paent parcipants had a professional
college educaon or less, four had university bachelor’s degrees,
and nine held graduate degrees. In four instances, paents’ partners
were consented to and present for the interview; in two of these
interviews, the partners contributed signicantly.
3.2.2 | Paent preferences for involvement in
health- care decision making
Paentspreferinvolvementindecisionmaking
In discussing decision making, paents emphasized the need for commu-
nicaon of informaon and preferences between physician and paent,
with the deliberaon of treatment opons. In general, paents found it ac-
ceptable that the nal decision be made by the paent or by the physician,
if this was in line with their preference. Preferences as to who ought to make
this nal decision varied (i) between individuals and (ii) between decisions.
Preferencesfordecisionalcontrolvarybetweenindividuals
Some paents preferred to make the nal decision (paent chooses),
some wanted the decision- making process to be evenly shared (shared
choice), while others preferred to delegate nal decisions to the doctor
(paent delegates) (see Table 3). Importantly, when paents expressed
wanng to delegate the decision to the physician, they noted that they
would sll have to consent to this nal decision. All paents stressed
the importance of being informed of treatment opons and of being
involved in the deliberaon about dierent decisions.
Preferencesforparcipaonvarybetweendecisions
Individuals modulated their decision- making preference based on
the decision to be made. For example, some patients preferred
TABLE2 Mean API score in dierent vignees
Vignee 1
(cold)
Vignee 2
(blood pressure)
Vignee 3
(roune PD)
Vignee 4 (PD
progression)
Vignee 5 (PD- associated
emoonal distress)
Mean (potenal range of 0–10) 5.9 (SD ±1.59) 5.0 (SD ±1.52) 4.4 (SD ±1.39) 4.9 (SD ±1.49) 6.7 (SD ±1.46)
Range 3–9 2–9 2–7 2–7 3–10

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ZiZZo et al.
that decisions about medication (e.g. dosage) be made by the
doctor (patient delegates). For other decisions, such as decisions
on treatments with potentially severe effects on the quality of
life, patients wanted to play a bigger role in the decision- making
process (patient chooses). Relational context also affected their
decision- making preferences (e.g. an established relationship of
TABLE3 Preferences for decisional control varied between individualsa
Paent delegates Shared choice Paent chooses
P38: …when we reach a way of treatment I prefer to
be mostly doctor- directed but with my involvement
so I understand, what is this single or mulple
treatment…are there several? Which are the
benets? Which are the downsides…and so on and
so forth. Prey much I feel the more interacons
you can have the beer. You know?
I: Why do you say the doctor should make the
nal decision?
P10: Well, it’s certain that it will be with my consent,
but I have so much condence in the physician. I
don’t have the tools to go beyond the informaon
that I have; he has maybe the more broad technical
informaon. Where he goes, in the end, he will
always suggest to me one path or another, and if I
don’t want it, I think the treatment won’t happen.
But I have condence in the medical informaon, I
might not agree with the path because it’s scary, for
examples the electrodes in the brain, or the
medicaons, but I will give him the benet of the
doubt to make these types of decisions, and I will
accept aer informaon.
P14: I would expect the doctor and I,
and my spouse, to be involved as a team
P32: I think the physician lays out your
opons and I think that it’s up to you
both to decide whether this would be
best, or beer for you, whether it is
medicaon or doing some form of
exercise, or climbing mountains or
whatever it is. If the opons are
presented to you then you can both
discuss the pros and cons and make
(…) an informed decision.
P47: Well I think that it should be done
together. The doctor works based o of
what he perceives from the paent, and
it’s in talking with the paent that he
can learn even more. And that’s why, if
the paent gives frank and detailed
informaon, well it certainly has to help
the guide the doctor to the best
soluons for the paent in queson.
P26: The ulmate decision should be from the paent.
I: So why do you say that?
P26: Because he or she is the one who is suering. They
know what they are going through and they should take
a chance on anything they want. It’s not the doctor.
P26′: Yeah, and I think ulmately it’s, you know, it is the
life of the person, you know? It should be…yeah. If the
person, the paent has all his mental capacity then I think
it should be…as long as it is…yeah…healthy mind.
P25: Oh, the paent being involved in decision making,
you’re involved in everything. It’s your life. I mean, it’s not
up to…I don’t think it’s up to…well, it’s your decision but it
should be discussed with your doctor and you.
P45: I think that it comes back to the paent in the end.
But aer a discussion with the doctor that is suciently
in depth, if you will. I think that the doctor has to be
there to guide the paent to make his own decision. […]
So I think that it’s up to the physician to be a bit of a
guide, and to try and see when he thinks the paent is
headed towards the decision on his own.
aNote we use a spectrum of shared decision making, where responses under “shared choice” indicate an approximately even contribuon between physi-
cian and paent to the health- care decision, responses under “paent delegates” indicate the paent prefers the physician to make the nal decision, and
“paent chooses” indicates the paent is more likely to make the nal decision. Individuals did not necessarily adhere to one preference for all decisions.
TABLE4 Examples illustrang that preference for involvement in decision making are decision dependent and context and relaon dependent
Decision-
dependent
Decisions requiring technical knowledge (e.g. medicaon) are oen delegated to the physician:
P9: I trust my doctors and I appreciate their treatments, and they are making a lot of decisions. They consult me and they tell me what
they are doing. […] I’m not saying “no I want a lower dosage or a higher dosage”… I trust her on that. She’s making that kind of decision.
P10: The nal decision on whether or not to increase the medicaon, it’s him [the physician] that makes that decision, that’s
certain. But I like to know the reasons as to why he’s making these decisions.
P16: (…) for things like doses, I can’t regulate that, he has experse I will never have. […] So, there are certain decisions that he has
to take because I need it.
Decisions about lifestyle require paent involvement:
P16: (…) the style of living, the way you need to live your life, that’s up to you. You can help me by saying be careful, you know.
You may eventually get to the point where you’re going to trip and fall, so yeah if you’re thinking about changing house, good for
you. I think it’s a good wise decision but the ulmate decision will be up to me.
Physician has experse about treatments; paent can decide overall treatment goals:
P32: I think…as far as medicaon treatment, I believe the physician should make the ulmate decisions because he knows more
about what eects it has and if it can counter aack whatever is the problem at the moment, but in the long run, we have to
decide for ourselves what we’re going to do, whether we’re going to take that chemotherapy or not…and so on, but as I said
before, it has to be an informed decision and listen to what the physician has to tell you…and decide together.
Context-
and
relaon-
dependent
Personal and contextual factors impact decisions:
P24: How old would I be? What would be my income? Where will I live? All of those are factors that I have that are outside of my
[control] but I have to be taking care and into consideraon before I make my decision and that’s outside the doctor and medical care.
Personal relaonships impact decisions:
P14: My spouse has a big inuence on me. I used to be the one that took charge, and now the roles are reversed now that we are
in our 70s and I very much respect her advice.
Trusng relaonship with physician is necessary for decision making:
P60: It’s their body. It’s their life so I think the ulmate decision should be the paent’s but taking into account that the doctor has said
and bearing in mind whether you trust the doctor or you don’t. If you don’t trust the doctor you shouldn’t be there in the rst place. If
you do trust the doctor your decision has to be in line with that knowledge…that your doctor would not suggest anything that would
be harmful to you. You see? But basically the ulmate decision begins with the paent who has to sign these consent forms, not the
doctor. The paent has to realise the doctor has gone to school and has had many more years of pracce experience and to trust them.

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ZiZZo et al.
trust with a physician may be necessary before delegating a deci-
sion). Thus, preferences for involvement in decision making are
decision-dependent and context- and relation-dependent (see
Table 4).
Navigangdecisionmakingwhenthereisdisagreement
In a hypothecal situaon of conict (e.g. a paent and doctor can-
not agree on a treatment), there was large support for the paent to
be the nal decision- maker. However, many paents described how
they would prefer to come to an agreement with their physician. In in-
stances where an agreement cannot be met, some described the need
to seek second opinions. In a minority of cases, paents were willing
to follow the doctor’s suggeson, provided that they have been suf-
ciently informed and they trust their physician.
Perspecvesonpaentexclusionfromdecisionmaking
Allowing the physician to decide enrely which treatment is ap-
propriate or excluding the paent from health- care decision making
was viewed as acceptable only when the paent is mentally inca-
pable (i.e. paent lacks capacity). Some parcipants menoned the
lack of paent educaon or experience in medical encounters, the se-
verity of disease or the complexity of treatment as situaons that
may warrant the physicians taking greater control. However, pa-
ents invoked these situaons as hypothecal examples and gen-
erally did not associate these situaons with themselves. Overall,
paents wanted to be involved in decision making, even if only for
informaon exchange.
3.2.3 | Paent perspecves on the paent–physician
relaonship in relaon to decision making
Paents emphasized the importance of the paent–physician rela-
onship, and they described the need to be respected as persons.
Communicaon was the underlying theme in arculang the values
important to their care (e.g. candour, honesty, understanding and em-
pathy). For the paent–physician relaonship, paents valued mutual
respect, trust, openness and me for communicaon. The need for
the relaonship to be non- hierarchical was noted.
Desiredqualiesofaphysician
Paents described a desire for physicians to possess technical skills
(e.g. give appropriate informaon, evaluate how the PD has pro-
gressed, be up- to- date) and interpersonal skills (e.g. listen, be empa-
thec, understanding). Central to both the technical and interpersonal
skills was the importance of informed and sensive communicaon.
Indeed, communicaon was the chief concern, and other important
physician qualies such as sincerity, caring and empathy were ed to
communicaon skills.
Idealqualiesofapaent
Parcipants described various qualies that paents should possess,
such as being open, honest and proacve. They also described the
responsibilies a paent must take on, including self- management
pracces, informing the doctor of new symptoms, preparing quesons
for the clinical encounter, seeking informaon from external sources,
listening to the medical advice and complying with the agreed course
of acon or informing the physician if they choose to not follow the
plan.
Paentsandcliniciansbringuniqueknowledgetothedecision-
makingencounter
Parcipants recognized that each agent in the paent–physician re-
laonship possess dierent types of knowledge central to decision-
making processes (see Box 1). The physician was viewed as having
the technical, specialized knowledge, based on their educaon and
experience. Paents viewed this specialized knowledge as seng the
neurologist apart from other care providers, making them an invalu-
able part of their care. At the same me, paents recognized that they
possessed the knowledge of the lived experience of the disease, as
well as awareness of their own values and goals for care.
3.2.4 | Paent preferences for accessing informaon
relevant to decision making
Ulizedsourcesandtypesofinformaonpaentsseek
Paents most commonly cited seeking PD informaon from the
Internet (N=16), PD foundaons or associaons (N=12) and the
medical personnel at the specialist clinic, including the neurologist
and nurse clinician (N=10). Paents also accessed informaon from
books (N=6), personal networks (e.g. family, friends, support groups;
N=6), television, radio or newspaper (N=2), and from other sources
such as conferences or specialized rehabilitaon centres (N=3).
The types of informaon paents wanted varied with sources (see
Table 5).
In the medical encounter, paents somemes expressed a diculty
in knowing which quesons to ask. In general, they were parcularly
interested in an assessment of the state of their PD, what to expect in
terms of future progression of their illness, and treatment opons. This
was in line with the primary role paents expected from their physi-
cians, which was to connually assess their condion and control their
symptoms with medicaon as needed. In consulng other sources, pa-
ents wanted to learn most about PD symptoms, current and upcoming
PD research, treatment opons and self- management strategies.
Dierent sources of informaon were viewed as having vari-
ous advantages and disadvantages. Foundaons were viewed as a
reliable, focused, readily available source. Medical personnel were
viewed as an expert and personalized source, but the me between
appointments meant that they were not a readily available source
of informaon. The Internet was oen used to connect paents to
foundaons, to conrm informaon learnt elsewhere and to inves-
gate informaon related to PD. However, the unclear reliability of
some websites and the uncontrolled nature of the readily available
informaon on the Internet were viewed as disadvantages. In par-
cular, the detailed informaon on the most advanced stages of the
disease was described as upseng to some paents, leading some

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ZiZZo et al.
to limit their online research. About half of the paents described
dierent strategies they use to disnguish between the reliability of
the sources (e.g. using known sources such as foundaon websites,
or scienc and medical websites; checking if mulple sites gave the
same informaon; remaining scepcal of unveried sources). At least
a quarter of paents did not describe any strategies for reliability;
they “just put in Parkinson’s disease” and click on “whatever comes
up” (P51).
Some paents complained that some sources (e.g. a video from a
foundaon depicng various exercises for PD) only represented elderly
PD paents. This was viewed negavely as it did not represent their
experience, and is important to note in the light of the average age of pa-
ents with PD (early to mid- 60s).23 The uncertaines of PD, including its
cause, an individual’s expected progression and the lack of objecve tests
for diagnosis, presented a challenge for some paents with PD. Paents
struggled with wanng to know this informaon, despite its unavailability.
The extent to which they understood that this informaon does not exist
was unclear.
LimitstolearningPD-relatedinformaon
Many paents expressed wanng to know as much informaon about
PD as possible. Informaon about PD, especially about its progres-
sion, was viewed as important for the paent to adapt and prepare
for the future. Paents acknowledged that the informaon can be
upseng, but felt that it was important for them to know, and that
they should be able to adapt to the news, even if it was dicult.
Despite mulple paents’ expressions of wanng to know everything,
they also reported a limit either to what they wanted to learn or to
what they wanted to focus on (see Box 2). In part, this was a prac-
cal concern, as many acknowledged the outcomes of the disease
are uncertain and as a result many expressed a “take things as they
come” atude; a focus on the negave outcomes can be emoonally
taxing. At the same me, most paents have a general knowledge of
the long- term outcomes of PD; this is generally learnt in the rst few
years aer diagnosis, and as they adapted to their diagnosis, paents
tended to focus on this less. At least one paent did not want to re-
ceive any informaon about PD, due to nding it emoonally distress-
ing, and preferred that their partner receives the informaon instead.
However, this paent expressed that they would not want important
informaon to be hidden from them.
BOX 1 Illustraveexamples:eachagentbringsdierenttypesofknowledgetodecision-makingprocesses
Paent brings experienal knowledge:
P16: I value the doctor’s opinion a lot as long as he values my opinion as well, because I’m the one that’s living the disease. He might know
about it but he doesn’t have it. (…) I will always tell you, you don’t know what it feels like unl you’ve actually lived it. And [the specialist],
there’s no way that he can actually honestly and truly deep down inside know how I feel unl he’s in my shoes and he has Parkinson’s. He
can know tons of knowledge about it and that’s what I respect about him, is his knowledge, but unl he can get into my shoes and live with
Parkinson’s, that’s where I come in, to kind of complement his studies.
Paent brings bodily experience:
P25: Well of course the doctor has more medical experience but the individual is the person having the bodily experience, you know all the
problems that come with it, so of course they have to communicate with one another.
Physician brings medical knowledge:
P24: Well, basically the doctor has the capacity to evaluate based on the facts, based on the tests, based on everything, her experience and the
medicaon and her training. She can tell me what she thinks is the best and from that me I will talk with her, ask quesons, decide about it
and together we’ll plan for the future. (…) I’ll follow her because I trust her. Because I know that she won’t propose something for nothing. She’ll
propose some things because I may need it. With her experience, her know how and her past cases, if it’s me for me to take medicaon.
Paent can undertake acve informaon seeking; physician, acve listening:
P38: As a paent you should get your hands on as much more specialist informaon as you can. Try to digest it and write down your ques-
ons and refer to ask them, so that’s what I did. On the side of the doctor, I prefer the doctor to listen to me and to listen to all the symp-
toms that I might be able to describe and try to have the diagnosis as early as possible.
TABLE5 Types and sources of informaon sought about
Parkinson’s disease
Types of informaon
Sourcea
Clinic Other
Assessment of PD state 13 0
Progression of PD 10 4
Treatments for PD 8 6
Scienc research related to PDb56
PD symptoms 4 7
Self- management strategies 4 6
Causes of PD 3 1
Complementary and alternave medicine 2 2
Other 1 0
aResearch reports and opportunies for research parcipaon.
bNumbers indicate the number of parcipants reporng the use of this
source of informaon.

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4 | DISCUSSION
The results of this study are consistent with prior research showing
variaon in paent preferences.13,24,25 Importantly, our research
is the rst, to our knowledge, to qualitavely and quantavely in-
vesgate health- care decision- making parcipaon preferences in a
chronic neurodegenerave disease populaon.
We found that most paents with PD describe wanng a kind of
shared decision making, especially as this relates to informaon exchange
and deliberaon, while preferences for decisional control depend on the
decision type (e.g. medicaon versus lifestyle) and on contextual and re-
laonal factors (e.g. age, income, need for trust in paent–physician rela-
onship). Results from the API complement these qualitave observaons.
The average decision- making score for parcipants was 63, which indi-
cates a mid- range preference for autonomy that can correspond to shared
decision making. A detailed look at the API decision- making scale results
suggests that in some contexts or situaons paents wanted less auton-
omy in medical decision making. In parcular, paents with PD had lower
autonomy preferences when it came to making a decision about when
their next appointment should be, which may be a preference that reects
their actual experience. They also preferred that the physician takes greater
control as their illness worsens, which may be connected to the types of
impairments that can occur in late- stage PD (e.g. demena) and the rela-
onship paents expect to develop with their physician over the course of
their illness. The laer nding is in line with our qualitave data that sug-
gest paents would nd it acceptable to be excluded from decision making
only when they were cognively unable to do so. However, it contrasts
with the ndings from the PD- focused vignees in the API, where signi-
cantly more autonomy was desired as the disease progresses, and the most
autonomy was desired when emoonal symptoms were involved. On this
last point, it is possible that emoonal symptoms are perceived dierently
than motor or cognive symptoms, and thus, paent preferences for au-
tonomy diered specically with this set of symptoms. The data gathered
from the vignees also suggest that paent preferences for autonomy dif-
fer in the general medical context, where paents wanted higher auton-
omy, versus in the specic PD care context. Survey results also revealed a
trend for parcipants with lower levels of educaon (a professional college
educaon or less) to have lower scores on the decision- making scale of the
API, than parcipants with higher levels of educaon (graduate or bache-
lor’s degree). The dierence observed did not reach stascal signicance,
but is in line with other research that suggests higher educaon is associ-
ated with higher preference for autonomy.15 These ndings suggest that
context is a complex modulator of autonomy preferences.
We found that most paents want full informaon about their con-
dion and treatment opons, which is consistent with prior research
(e.g. see26–28). However, our data demonstrate why, in the context of
a chronic neurodegenerave illness, paents might have reasonable
limits to the types and amounts of informaon they want to know or
focus on (e.g. due to the uncertainty in prognosis of PD, adaptaon to
the diagnosis and life with a chronic degenerave illness).
We also explored the importance of the paent–physician relaon-
ship and found that paents highly valued this relaonship. For an excel-
lent paent–physician relaonship, they emphasized the importance of
communicaon and, in parcular, cited the need for physicians to pos-
sess strong interpersonal skills and for paents to take on certain respon-
sibilies in their care. Their emphasis on the “human” side of interacons
corresponds to the central aim of PCC to treat paents as persons.
4.1 | Paent preferences for involvement in decision
making are dynamic and support shared decision making
Paents’ preferences for involvement are not stac; rather, they shi
depending on decisions, context and relaonships. This suggests a
BOX 2 Paentpreferencesforinformaon
Paents express wanng to “know everything”:
P25: I need to be told everything that needs to be told, good or bad. […] I think the doctor needs to be totally honest.
P31: I would always want to have a chance to know something, even if it was really scary and really painful.
Paents note limits due to the unknowns of PD:
P31: I don’t know that anybody has a crystal ball that can predict how I will turn out. So I just don’t want to waste me thinking about… Not
that I don’t accept it, but how much is it worth devong me talking about what are the eventual possibilies if they may not happen (…) I
think I’m more praccal about what is happening, how can that be addressed?
Adaptaon to diagnosis can aect informaon preferences:
P31: I have a big, busy job. It’s more than full me. I have a family that’s very acve, and I’m very busy with them. […] And I have lots of
friends and lots of stu going on, so I think there is a limit to how much I want to hear and invest in Parkinson’s. When I rst got the diag-
nosis, I was reading more, always from good sources. I was thinking about it more. I was wring things down about what I thought, but very
naturally, it sort of assumed less of a prominent posion. It’s like, “Okay, yeah, you got Parkinson’s. So what else are you doing?” Whereas,
for a lile me, it was really everything I was thinking about.
Emoonal sensivity can preclude desire for informaon:
P44: I don’t want any [informaon]. I want [my spouse] to get it all. […] Because I’m frightened of what might happen…

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ZiZZo et al.
need to understand decision making in a more dynamic way.29,30
Interesngly, paent preferences for involvement in informaon ex-
change and deliberaon are more or less consistent, with the varia-
on lying in desire for decisional control. This is noteworthy as there
is some debate as to the extent to which each of these stages must
be shared in order for the process to be considered shared decision
making.31 The ease with which paents express a preference for in-
formaon exchange and deliberaon that is not mirrored when they
are asked about preferences for decisional control may be related
to the chronic nature of PD, where medically relevant decisions are
not as discrete as they may be in more acute illnesses. For the pa-
ent with PD, certain decisions can necessitate dierent levels of
involvement. For example, decisions about medicaon may require
paent–provider partnership, paents may prefer to be more self-
directed in decisions about long- term preparaon for the disease
and self- management, and progression of the disease may require
the physician or surrogate to assume greater decisional control over
me. Arculang preferences about involvement in decision mak-
ing can be challenging when there are a variety of decision types
which might require dierent levels of involvement. This points to a
need for clinicians to assess paent preferences for involvement on
an on- going basis, similar to recommended pracces for evaluang
decisional capacity.32 Tools to facilitate this evaluaon and paent
involvement in decision making may need to be developed.
Of interest, paents in our study specically described many of
the elements and qualies of shared decision making idened in a
systemac review.33 They expressed a desire for essenal elements
of shared decision making, such as explanaon of the problem, discus-
sion of the pros and cons and explicaon of paent values and prefer-
ences; ideal elements such as mutual agreement; and general qualies,
such as mutual respect, paent parcipaon and partnership. Overall,
our study provides empirical support for the relevance of shared deci-
sion making to paents in PCC. This is noteworthy considering shared
decision making has been referred to as the “pinnacle” of PCC.34
4.2 | Support for relaonal autonomy in paent-
centred care
Paent- centred care, by respecng and responding to the wants,
needs and values of paents, seeks to support the paent in decision
making and thus needs to adopt a model of autonomy that promotes
involvement of the paent, but does not leave them without support.
PCC, in treang the paent as person, acknowledges that paents are
complex, social beings, with interdependencies and interconnecons
that can inuence decision making, a view that corresponds to “re-
laonal” or “contextualized” autonomy.35–37 This perspecve on au-
tonomy contrasts with some narrower understandings that interpret
autonomy as conceding to individualisc decision making without due
consideraon for the social determinants of choice, or for the commit-
ment to care and benecence of health- care providers.
The central tenet of relaonal autonomy is that “persons are socially em-
bedded and that agents’ idenes are formed within the context of social
relaonships and shaped by a complex of intersecng social determinants,
such as race, class, gender and ethnicity.”38 This concept stems chiey from
feminist ethics, but also from pragmast ethics,39,40 and recognizes the ef-
fects of contextual and relaonal factors on decision making.
Our ndings suggest that relaonal autonomy corresponds to how
paents would envision their parcipaon in decision making. Paents
recognized the impact of contextual and relaonal factors on their in-
volvement in decision making and they acknowledged the central role
the paent–clinician relaonship plays in their care. By explicitly adopt-
ing relaonal autonomy in the provision of PCC, clinicians are called on
to recognize the dierent factors that can aect a paent’s desire to be
involved in decision making, and to respond to these factors in such a
way that empowers paents in relaon to their wants, needs and values.
5 | LIMITATIONS
There are several limitaons to our study. It is a cross- seconal study
with a sample populaon limited to paents who had early- stage PD;
how preferences may change over me, and the eects of advanced
stages of PD on decision- making preferences are unclear. Paents came
from a large urban area, were serviced by a university- level health centre,
in a specialized PCC clinic within a publically funded health- care system;
this demographic may not be reecve of the general PD populaon. In
parcular, while average age and gender were closely matched to aver-
ages for PD populaons,23 our sample size had a high- level educaon,
which is important to note given the eects of educaon on decision-
making preferences.15 Paents self- reported their parcipaon prefer-
ences; future studies of how their self- reported parcipaon preferences
compares to their actual parcipaon preferences would be of interest.
6 | CONCLUSION
This study suggests that paents largely prefer a shared decision-
making approach, while individual paent preferences for involvement
can vary between persons and between decision types. Consequently,
clinicians may need to evaluate paent preferences for involvement
on an on- going basis, and tools to facilitate both this evaluaon and
paent involvement in decision making may need to be developed.
Specic adopon of relaonal autonomy by clinicians would comple-
ment this approach. Our study illustrates that aenon must be given
to paent perspecves and that communicaon is key in clinical re-
laonships. Improved understanding of individual preferences could
enhance respect for persons and autonomy and make for PCC that is
truly respecul of individual paents’ wants, needs and values.
ACKNOWLEDGEMENTS
The authors would like to thank Gevorg Chilingaryan for support in
stascal analysis, the paents who parcipated in this research,
sta at the PD clinic, members of the Neuroethics Research Unit for
feedback on this work and Simon Rousseau- Lesage for his help in the
eding process.

10
|
ZiZZo et al.
SOURCES OF FUNDING
Funding for this work was provided by the Canadian Instutes of
Health Research (ER (PI) and EB (co- I)) and the Fonds de recherche
santé – Québec (career award, ER; master’s scholarship in partnership
with Unité SUPPORT du Québec, NZ).
CONFLICTS OF INTEREST
The authors have no conicts of interest to report.
REFERENCES
1. Parkinson’s Disease Foundaon. Stascs on Parkinson’s 2015
[accessed May 24 2015]. hp://www.pdf.org/en/parkinson_stascs.
2. Van Der Eijk M, Faber MJ, Al Shamma S, Munneke M, Bloem BR.
Moving towards paent- centered healthcare for paents with
Parkinson’s disease. Parkinsonism Relat Disord. 2011;17:360–364.
3. Instute of Medicine (US). Commiee on Quality of Health Care in
America. Crossing the Quality Chasm: A New Health System for the 21st
Century. Washington, DC: Naonal Academies Press; 2001.
4. Canadian Medical Associaon. Achieving Paent-Centred Collaborave
Care. Oawa: Canadian Medical Associaon; 2008.
5. Michie S, Miles J, Weinman J. Patient- centredness in chronic
illness: What is it and does it matter? Patient Educ Couns.
2003;51:197–206.
6. Stewart MA. Eecve physician- paent communicaon and health
outcomes: a review. CMAJ. 1995;152:1423–1433.
7. Duggan PS, Geller G, Cooper LA, Beach MC. The moral nature of
paent- centeredness: Is it “just the right thing to do”? Paent Educ
Couns. 2006;62:271–276.
8. Abudi S, Bar-Tal Y, Ziv L, Fish M. Parkinson’s disease symptoms—’pa-
ents’ percepons. J Adv Nurs. 1997;25:54–59.
9. Buetow S, Giddings LS, Williams L, Nayar S. Perceived unmet
needs for health care among Parkinson’s Society of New Zealand
members with Parkinson’s disease. Parkinsonism Relat Disord.
2008;14:495–500.
10. Nisenzon AN, Robinson ME, Bowers D, Banou E, Malaty I, Okun MS.
Measurement of paent- centered outcomes in Parkinson’s disease:
What do paents really want from their treatment? Parkinsonism Relat
Disord. 2011;17:89–94.
11. Wressle E, Engstrand C, Granérus AK. Living with Parkinson’s disease:
elderly paents’ and relaves’ perspecve on daily living. Aust Occup
Ther J. 2007;54:131–139.
12. Mulley AG, Trimble C, Elwyn G. Stop the silent misdiagnosis: paents’
preferences maer. BMJ. 2012;345:e6572.
13. Robinson A, Thomson R. Variability in paent preferences for parci-
pang in medical decision making: implicaon for the use of decision
support tools. Qual Health Care. 2001;10(suppl 1):i34–i38.
14. Say RE, Thomson R. The importance of paent preferences in
treatment decisions—challenges for doctors. BMJ. 2003;327:542.
15. Say R, Murtagh M, Thomson R. Paents’ preference for involvement
in medical decision making: a narrave review. Paent Educ Couns.
2006;60:102–114.
16. Charles C, Gafni A, Whelan T. Decision- making in the physician–
paent encounter: revising the shared treatment decision- making
model. Soc Sci Med. 1999;49:651–661.
17. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring paents’ desire
for autonomy: decision making and informaon- seeking preferences
among medical paents. J Gen Intern Med. 1989;4:23–30.
18. Paon M. Purposeful Sampling. Qualitave Evaluaon and Research
Methods. London: Sage; 2004:169–183.
19. Hellström I, Torres S. A wish to know but not always tell–couples
living with demena talk about disclosure preferences. Aging Ment
Health. 2013;17:157–167.
20. Doherty C, Doherty W. Paents’ preferences for involvement in clin-
ical decision- making within secondary care and the factors that inu-
ence their preferences. J Nurs Manag. 2005;13:119–127.
21. Green J, Thorogood N. Qualitave Methods for Health Research.
London: Sage; 2013.
22. Hsieh HF, Shannon SE. Three approaches to qualitave content anal-
ysis. Qual Health Res. 2005;15:1277–1288.
23. Samii A, Nu JG, Ransom BR. Parkinson’s disease. Lancet.
2004;363:1783–1793.
24. Levinson W, Kao A, Kuby A, Thisted RA. Not all paents want to par-
cipate in decision making. J Gen Intern Med. 2005;20:531–535.
25. Nilsson UG, Ivarsson B, Alm-Roijer C, Svedberg P. The desire for involve-
ment in healthcare, anxiety and coping in paents and their partners
aer a myocardial infarcon. Eur J Cardiovasc Nurs. 2013;12:461–467.
26. Beisecker AE, Beisecker TD. Paent informaon- seeking behaviors
when communicang with doctors. Med Care. 1990;28:19–28.
27. Cassileth BR, Zupkis RV, Suon-Smith K, March V. Informaon and
parcipaon preferences among cancer paents. Ann Intern Med.
1980;92:832–836.
28. Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL. Through the
Paent’s Eyes: Understanding and Promong Paent-Centered Care. San
Francisco: Jossey-Bass; 1993.
29. Muller S, Walter H. Reviewing autonomy: implicaons of the neuro-
sciences and the free will debate for the principle of respect for the
paent’s autonomy. Camb Q Healthc Ethics. 2010;19:205–217.
30. Racine E, Dubljević V. Behavioral and brain-based research on free
moral agency: Threat or empowerment? In J Illes and S Hossain (eds):
Neuroethics: Dening the Issues in Theory, Pracce and Policy, Second
edion. Oxford: Oxford University Press; In press.
31. Flynn KE, Smith MA, Vanness D. A typology of preferences
for parcipaon in healthcare decision making. Soc Sci Med.
2006;63:1158–1169.
32. Etchells E, Sharpe G, Ellio C, Singer PA. Bioethics for clinicians: 3.
Capacity. CMAJ. 1996;155:657–661.
33. Makoul G, Clayman ML. An integrave model of shared decision mak-
ing in medical encounters. Paent Educ Couns. 2006;60:301–312.
34. Barry MJ, Edgman-Levitan S. Shared decision making—the pinnacle of
paent- centered care. N Engl J Med. 2012;366:780–781.
35. Entwistle VA, Wa IS. Treang paents as persons: a capabilies
approach to support delivery of person- centered care. Am J Bioeth.
2013;13:29–39.
36. Ells C, Hunt MR, Chambers-Evans J. Relaonal autonomy as an essen-
al component of paent- centered care. Int J Fem Approaches Bioeth.
2011;4:79–101.
37. Racine E, Aspler J, Forlini C, Chandler J. Broadening the lenses on
complementary and alternave medicines in preclinical Alzheimer’s
disease: tensions between autonomy and contextual determinants of
choice. Kennedy Inst Ethics J. 2016. In press.
38. Mackenzie C, Stoljar N. Relaonal Autonomy: Feminist Perspecves on
Autonomy, Agency, and the Social Self. New York: Oxford University
Press; 2000.
39. Wolf SM. Shiing paradigms in bioethics and health law: the rise of a
new pragmasm. Am J Law Med. 1994;20:395–415.
40. Racine E. Pragmac neuroethics: the social aspects of ethics in disor-
ders of consciousness. Handb Clin Neurol. 2013;118:357–372.
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