Framing Advance Care Planning in Parkinson Disease: Patient and Care Partner Perspectives
Framing Advance Care Planning in Parkinson Disease: Patient and Care Partner Perspectives
Framing Advance Care Planning in Parkinson Disease: Patient and Care Partner Perspectives
®
Hillary.lum@ucdenver.edu
Neurology 2019;92:e2571-e2579. doi:10.1212/WNL.0000000000007552
Objective Editorial
Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson Palliative care and
disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. advance care planning in
This study describes patient and care partner perspectives on ACP to inform a patient- and care Parkinson disease
partner-centered framework for clinical care. Page 1039
Methods
This is a qualitative descriptive study of 30 patients with PD and 30 care partners within
a multisite, randomized clinical trial of neuropalliative care compared to standard care. Par-
ticipants were individually interviewed about perspectives on ACP, including prior and current
experiences, barriers to ACP, and suggestions for integration into care. Interviews were ana-
lyzed using theme analysis to identify key themes.
Results
Four themes illustrate how patients and care partners perceive ACP as part of clinical care: (1)
personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care
system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4)
a palliative care approach positively influences ACP. Taken together, the themes support
clinician initiation of ACP discussions and interdisciplinary approaches to help patients and
care partners overcome barriers to ACP.
Conclusions
ACP in PD may be influenced by patient and care partner perceptions and misperceptions,
symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical
care. Optimal engagement of patients with PD and care partners in ACP should proactively
address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate
ACP into regular care.
From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado
Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain
Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San
Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.
Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
Advance care planning (ACP) is a process that supports Standard protocol approvals, registrations,
adults in understanding and sharing their values, life goals, and and participant consents
preferences regarding future medical care.1 ACP is associated All participants provided written informed consent. This
with increased patient satisfaction and quality of life, fewer study was approved by the Institutional Review Board at each
unwanted hospitalizations, and greater use of palliative care site. The clinical trial identifier is NCT02533921.
(PC) and hospice.2,3 In Parkinson disease (PD), advance
discussion and planning that acknowledges future changes Setting and participants
related to the illness may help affected patients and care Study participants were drawn from 210 patients with PD and
partners focus on quality of life. Recognizing the importance care partners from the University of Colorado, University of
of ACP as part of high-quality PD care, which includes doc- Alberta, and University of California San Francisco. Patients
umentation of care preferences in advance directives, the were included if they were fluent in English, over age 40, met
American Academy of Neurology Parkinson’s Disease Updated UK Brain Bank criteria for a diagnosis of probable PD,16 and
Quality Measurement Set recommended patients with PD had moderate to high PC needs as assessed by the Needs
have an advance directive or designated medical power of at- Assessment Tool: Parkinson’s Disease,17 a modified version of
torney within the prior 12 months.4 Current care of individuals the Palliative Care Needs Assessment Tool18 that includes PD-
with PD does not routinely address ACP.5–9 In addition, given specific criteria including disease severity and motor and non-
the high potential for loss of decision-making capacity, early motor symptoms (available upon request). For qualitative
ACP is important to ensure that end-of-life preferences are interviews, patients had to complete the 12-month visit.
honored.10 Patients were excluded if they had urgent PC needs, had an-
other diagnosis requiring PC support (e.g., metastatic cancer),
ACP includes multiple steps such as identifying a surrogate or were unwilling to comply with study procedures including
decision-maker, discussing personal values, documenting randomization. Care partners were identified by asking the
preferences in an advance directive, and translating pref- patient “Could you tell us the one person who helps you the
erences into medical care plans, including out-of-hospital most with your PD outside of the clinic?” Having a care partner
orders (i.e., POLST form).11,12 Published rates of advance was not a requirement for participation. Participants were
directive completion or report of ACP conversations in compensated for participating in the randomized clinical trial,
individuals with PD varies, ranging from 68% to 95%, with including for these 12-month visit interviews.
the highest rate related to a study of proxy decision-making
for patients with advanced PD.13–15 Because there are no For this qualitative study, interviews were conducted between
best practice standards for integrating ACP as a core quality September 2017 and March 2018. During this period, 137
measure into neurologic care for individuals with PD, the participants (81 patients and 56 care partners) had reached the
objectives of this study are to elicit perspectives from 12-month visit. The study planned a goal of 60 interviews to
patients and care partners on ACP to inform a patient- and allow sufficient opportunity to sample across trial sites and
care partner–centered framework for PD clinical care and across participant type (patient or care partner). Patients and
research. care partners were purposefully selected for interviews from
each site, study arm, and sex to ensure representation across
these populations. Other efforts to maximize the variance in the
sample included specifically including individuals with cogni-
Methods tive impairment, high disease severity (based on Hoehn & Yahr
Design score), or lacking a care partner. Importantly, patients and care
This qualitative descriptive study leverages a large, multisite, partners were invited separately, rather than as a dyad. Thus,
randomized clinical trial of interdisciplinary outpatient some patients participated independent of a care partner, and
neuropalliative care compared to standard neurologic care vice versa. All participants, whether a patient or care partner,
for individuals with PD and care partners. In the trial, were interviewed separately. Site investigators provided input
patients and care partners, if care partners were available, to guide maximum variation sampling,19,20 including whether
were randomized in a 1:1 fashion to (1) standard care (includes a patient or care partner was no longer appropriate for an
a primary care provider and neurologist) or (2) outpatient, interview. Fifty-three individuals were not contacted due to
interdisciplinary team–based, PC augmenting standard severe dementia, relocation to a long-term care facility, medical
care. This qualitative study includes 60 participants who comorbidities such that the interview could be burdensome,
were interviewed following the final data collection point at deceased, dropped out, unable to be reached, or declined to
12 months. participate (n = 4) due to time constraints or discomfort.
Theme 1: Personal definitions ACP as part of routine care before diagnosis 1. If it had come up earlier, we might have done it. You’ve got to
of ACP vary in the context of PD of PD and often affected by prior ACP do it on a routine basis…every 3–5 years. Those things change.
experiences That’s regardless of Parkinson’s. Parkinson’s has nothing to do
with that. (Care partner, PC arm)
ACP in relationship to perceived PD stages: 2. I guess I just figure when I start feeling worse or doing worse…
acknowledging future changes and then I’ll make sure that [the directive is] in place, which I know
focusing on quality of life is ridiculous. (Patient, PC arm)
Theme 2: Patient, relationship, PD symptom-based barrier: apathy 1. Parkinson’s really impairs your ability to take the initiative on
and health care system barriers things. (Patient, PC arm)
exist to engaging in ACP
PD symptom-based barrier: cognitive 2. I don’t want to pull the plug because I’m worried that they’ll find
decline a cure the next day. (Patient, PC arm)
Limited or incomplete understanding of 3. I don’t know what would happen because I don’t know if
ACP anybody would see them [advance directives]. My husband is
a doctor and said when you’re near the end, those things don’t
always…it depends on what hospital I went to. I feel insecure
about the end of my life. (Patient, standard care arm)
Theme 3: Care partners Being informed decision-makers in ACP 1. It doesn’t matter what he wants. I just need to know what it is.
play an active role in ACP As a care partner, I don’t think you can opt out. If I’m going to
be responsible for doing it, I’ve got to know what I’m supposed
to do. (Care partner, PC arm)
Challenges of negotiating new roles in ACP 2. The one thing I’m not able to persuade him to do is a [out-of-
hospital order] form. He doesn’t want me to make him more
afraid. That’s not an appropriate role for me at the moment.
(Care partner, PC arm)
Assuming the role of medical decision- 3. He relies on me to make most of the major decisions. (Care
maker partner, standard care arm)
Theme 4: A palliative care Systematic inclusion of ACP in PC visits 1. Those discussions have happened; we’ve had at least 2 that I
approach positively can think of both with the nurse, the social worker, and the
influences ACP chaplain. Before that with the [palliative] team as far as signing
all the papers…that was definitely presented to us and we did
it, so that was good, for no resuscitation…those were the
things that were presented to us early on and helpful. They
really laid [it] out very clearly for us. (Care partner, PC arm)
contrast to ACP as a comprehensive process that includes Theme 2: Patient, relationship, and health care
multiple discussions, decisions, and documentation about system barriers exist to engaging in ACP
ACP, some patients and care partners defined ACP as com- Patients and care partners described multiple barriers to en-
pleting advance directives only and then believing that the gaging in ACP that were related to their experiences of PD.
document alone was sufficient. In these situations, having an These barriers were at the patient level, patient and care
advance directive present seemed to limit discussions about life partner relationship level, and health care system level. At the
values, and the rationale or implications of the ACP document. patient level, PD-related symptoms were barriers to engaging
At the patient and care partner level, relational issues between Theme 4: A palliative care approach positively
the patient and partner or family were another barrier. Both influences ACP
patients and care partners separately described the challenges Patients and care partners described the influence of PC on
of desiring to talk about future medical care planning but their experiences with ACP and planning for the future in the
facing resistance from the other person. Others were con- context of this neuropalliative care study. Many in the PC arm
cerned about protecting the emotional well-being of their described receiving help with discussing preferences for their
partner, family members, or young children. For individuals health care and completing advance directives. Two specific
who described this barrier, having care partners who were aspects of the PC approach were helpful to patients: (1)
willing to play an active role in ACP and having in- systematic and routine inclusion of ACP in PC visits with clear
terdisciplinary team-based approaches helped to navigate the and open conversations and (2) involvement of trained in-
tensions between a patient and care partner. terdisciplinary team members in facilitating ACP con-
versations. Participants described how these approaches were
Finally, there were also health care system–level barriers, in- beneficial to not feeling alone and facilitating important
cluding patients’ lack of trust that ACP preferences would be conversations between care partners and patients. The PC
honored by clinicians or the health care system. Participants approach often led to having a clear plan with tangible
were concerned that regardless of prior documentation re- resources and guidance towards discussions and documen-
garding ACP preferences for future medical care, their actual tation, which ultimately gave them peace of mind. The PC
end-of-life situation was too dependent on the decisions of approach also routinely included preparation of the care
hospitals or clinicians. This perceived barrier was common partner for their role as an informed medical decision-maker.
among patients and care partners receiving standard care, Conversely, many in the standard care arm shared clinical
though it also concerned PC arm participants. experiences where ACP was poorly integrated into clinical
care. For example, in standard care settings, some described
Theme 3: Care partners play an active role lack of physician support for the ACP process, mixed mes-
in ACP sages about its necessity, and time constraints to discuss ACP
Both patients and care partners described specific roles that in clinic visits. Among standard care patients, if an ACP
care partners played as active participants in the patient’s ACP conversation occurred, it was common for it to be a one-time
process. Instead of passively accompanying the patient, some conversation, often with lawyers and without medical input.
care partners readily took on the role of being informed
decision-makers. Patients expressed confidence in their care
partners as decision-makers, trusting that the care partner
Discussion
would know what to do in the moment of a medical decision. This is the first study to identify opportunities and barriers to
Similarly, care partners who were chosen as medical decision- ACP from the perspectives of patients and care partners af-
makers felt responsible for being informed about the patient’s fected by PD. In acknowledgment of the role of ACP in
preferences. improving consideration of patients’ treatment preferences
This study describes PD patient and care partner perspectives Sarah R. University of Author Study design,
Jordan Colorado Anschutz interviews, analysis,
on what influences or facilitates experiences related to ACP. Medical Campus, interpretation,
Patients with PD and care partners describe unique definitions Aurora manuscript
preparation, final
of ACP, barriers to ACP, roles of care partners in ACP, and the approval
positive influence of a neuropalliative care approach on ACP
Adreanne University of Author Study design,
engagement. This research adds suggestions for best practices Brungardt Colorado Anschutz interviews, analysis,
to engage patients and families with PD in ACP. Patients with Medical Campus, interpretation,
Aurora manuscript
PD and care partners have unique barriers to ACP that may be preparation, final
overcome through ongoing discussions. Successful integration approval
of ACP into neurologic practice can improve person-centered Roman Rocky Mountain Author Qualitative analysis,
care as well as patient and care partner outcomes. Ayele Regional Veterans interpretation,
Affairs Medical manuscript
Center, Denver, CO preparation, final
Acknowledgment approval
The authors thank the Parkinson’s Disease Patient and Family
Jacqueline University of Author Study design,
Advisory Council stakeholders: Fran Berry, Anne Hall, Kirk Jones Colorado Anschutz interviews, analysis,
Hall, Linda Hall, Carol Johnson, Patrick Maley, and Malenna Medical Campus, interpretation,
Aurora manuscript revision,
Sumrall; and Laura Palmer, Etta Abaca, Francis Cheung, Jana final approval
Guenther, Claire Koljack, Chihyung Park, Stefan Sillau, and
Maya Katz University of Author Study design, study site
Raisa Syed for their assistance as part of the larger study team. California, San investigator, analysis,
Francisco interpretation,
manuscript revision,
Study funding final approval
Research reported in this publication was funded through
Janis M. University of Alberta, Author Study design, study site
a Patient-Centered Outcomes Research Institute (PCORI) Miyasaki Edmonton, Canada investigator, analysis,
Award (IHS-1408-20134) and by the Palliative Care Research interpretation,
manuscript revision,
Cooperative Group funded by National Institute of Nursing final approval
Research U24NR014637. The statements presented in this
Anne Hall University of Author Study design, patient
publication are solely the responsibility of the authors and do California, San advisor, analysis,
not necessarily represent the views of PCORI, its Board of Francisco interpretation,
manuscript revision,
Governors, or Methodology Committee. final approval