Parkinson disease patients' perspectives on palliative care needs

Abstract

Background:

A growing body of literature suggests that patients with Parkinson disease (PD) have many unmet needs under current models of care that may be addressed through palliative care approaches. A first step in improving care for patients with PD through palliative care principles is to better understand patient perspectives on their perceived needs and care preferences.

Methods:

A total of 30 in-depth individual interviews and 4 focus groups were held to elicit the perspectives of patients with PD on unmet palliative care needs and preferences for addressing these needs. We used ATLAS.ti and inductive qualitative data analysis techniques to interpret responses.

Results:

Patients articulated major challenges in living with a diverse and complex set of motor and nonmotor symptoms; feelings of loss; changes in roles, relationships, and concept of self; and expressed concerns about the future. Participants discussed gaps in their care, including support at the time of diagnosis, education about the disease, and advance care planning. There was an expressed interest in and openness of participants to interdisciplinary approaches for addressing these needs.

Conclusions:

PD has a profound effect on multiple domains of a person's life starting at diagnosis. Patients desired individualized care and identified several areas where care from their primary neurologist could be improved. Patients were receptive to outpatient team-based palliative care services to address psychosocial issues, adjustment to illness (particularly at diagnosis and with progression), nonmotor symptom control, and advance care planning as an adjunct to usual care. Future research is needed to develop and test the effectiveness of palliative approaches to improve the care of patients with PD.

Parkinson disease (PD) is traditionally viewed as a movement disorder with characteristic motor symptoms that affect quality of life (QOL) but not mortality. However, it is now recognized that nonmotor symptoms affect the majority of patients with PD, decreasing QOL and increasing nursing home placement.¹ There is also increasing recognition of PD's effect on mortality.² Despite these advances, clinical care for PD continues under a chronic illness model focused on motor symptoms through a patient–physician dyad.³ Gaps in this model include management of nonmotor symptoms, grief, spiritual needs, advance care planning, caregiver support, and appropriate hospice referrals.^4–7

Palliative care is an approach to the care of patients and families affected by life-threatening illness that aims to relieve suffering through management of medical symptoms, psychosocial issues, and spiritual well-being. Although traditionally associated with hospice and cancer, palliative approaches have been successfully applied to several chronic illnesses, may be appropriate at any stage of an illness, and may be applied by primary care physicians and neurologists.^5,8,9 A fundamental first step in improving services for patients with PD is to identify their palliative care needs. To this end, we conducted a qualitative study eliciting patient perspectives on potential palliative care issues.

METHODS

Standard protocol approvals, registrations, and patient consents

All study procedures were approved by our institutional review board and written informed consent was obtained from all participants in the study. Authorization to disclose the names of patient reviewers of this article was acquired.

Recruitment

To maximize diversity, we recruited participants from an academic tertiary care center, a Veterans Affairs Medical Center, an inner city clinic, and community support groups. We initially used a convenience sample; however, as the study progressed, we used maximum variance sampling to ensure diversity in terms of sex, age, home environment (e.g., urban, rural), PD severity, and cognitive status.¹⁰ Eligible patients were English-speaking, over age 40 years, and met UK Brain Bank Criteria¹¹ for probable PD. We included patients with Hoehn & Yahr¹² stage I or higher. We specifically included patients with dementia. For these patients, we simplified questions and used caregivers as informants when needed. Patients who were unable to meaningfully answer questions, as determined by a movement disorders specialist, were excluded from this study.

Data collection

Interviews were conducted in clinic or patient homes. Interviews averaged 60 minutes, and were digitally recorded, transcribed, and entered into ATLAS.ti¹³ for coding and analysis. An interview guide (table 1) was used and revised during the study to probe emerging themes. Initial domains were based on studies of palliative care in heart failure and proposed models of PD palliative care.^14,15 Patients were asked their opinions regarding palliative care at the end of interviews; the term palliative was not used earlier to avoid potential biases.

Table 1.

Interview domains and sample questions

Analysis

Analysis goals included probing unmet needs, salient concerns, and care preferences. We used inductive qualitative data analysis techniques to interpret patient responses to interview questions as described below.^10,16 A code list was developed by 3 members of our team (I.B., J.J., and B.K.) to track salient quotations and ideas and revised with continued data collection and input from the multidisciplinary team. Text within and between codes was compared to develop broader themes. We employed several methods to increase the validity of our results, including the following: (1) observer triangulation (utilizing multiple analysts to review data); (2) data triangulation (obtaining data from multiple sources); and (3) member checking (eliciting feedback from a subsample of participants).^10,17 Data triangulation involved the use of varied data collection strategies including interviews and focus groups.¹⁰ In terms of member checking, we returned a draft of the findings to a subsample of participants in order to ascertain their sense of agreement with the findings.

RESULTS

Participant characteristics and overview

A total of 30 individuals with varying stages of PD and 4 focus groups (a distinct group of 4–7 patients each) completed interviews. Table 2 summarizes demographic and disease characteristics. The following themes emerged: (1) challenges of living with motor and nonmotor symptoms; (2) loss, grief, and identity; (3) worries about the future; (4) spiritual well-being; (5) gaps in care; (6) impressions of physicians; and (7) responses to palliative care. The results presented reflect these themes with additional descriptive examples presented in table 3.

Table 2.

Participant characteristics

Table 3.

Core themes with descriptive examples

Challenges of living with motor and nonmotor symptoms

In addition to the effect of motor symptoms on daily function, patients described how social embarrassment and the unpredictable nature of symptoms led to restriction of activities and social withdrawal. Tremor and gait issues were particularly difficult for patients. Participants reported multiple nonmotor symptoms, including fatigue, cognitive dysfunction, speech/communication issues, anxiety, depression, and pain, and these were often cited as being more challenging than motor symptoms. While these problems were common across patients with both early and advanced disease, deep brain stimulation appeared to result in more complaints regarding speech and communication. Patients described avoiding social interactions, interference with passions/hobbies, and inability to complete daily tasks. Fatigue was the most commonly cited most difficult nonmotor symptom. Fatigue often came on unexpectedly, leading patients to cancel plans and miss important events. Cognitive dysfunction was also common, limited function, and related to fears about being a burden and losing identity.

Loss, grief, and identity

Patients struggled with a sense of loss, changing roles, relationship changes, and concept of self. Some patients discussed PD's effect on their sex life in terms of both motor and nonmotor symptoms. One of the most pervasive themes was grief attributable to cognitive decline, which affected patients' sense of self. Participants discussed the loss of former roles in terms of family and partners. Some patients also talked about their identification and involvement with the larger PD community as a meaningful source of friendship and support (table 3).

Worries about the future

Patients described difficulty in living with uncertainties regarding how their PD would progress and future needs. This included fears regarding dementia, being a burden to loved ones, the loss of independence, and deterioration of personal appearance. Some patients discussed medication costs and the financial consequences of living with advanced PD. Falls were a source of fear and anxiety for both patients with and without current balance issues. Patients had concerns about planning for the future and advanced directives and often did not know to whom to turn for answers.

Spiritual well-being

Religion and spirituality were important for many patients, including helping with the acceptance of PD and for moving forwards in their new life with PD. Some patients used meditation and prayer as a source of strength. Others stated that they did not have religious or spiritual beliefs and often obtained support from other sources (i.e., family, friends, and nature).

Gaps in care

Patients discussed several areas in which they believed their neurologic care was inadequate. Patients appreciated the difficulties physicians face when giving a serious diagnosis, but emphasized the importance of individual variation in terms of how much information should be presented and the manner in which the diagnosis is given. Many patients described a sense of abandonment by their medical team after diagnosis due to the lack of support offered for dealing with its repercussions. Participants desired earlier follow-up, access to immediate emotional support, and improved connections to PD resources. Participants articulated the need for more education, particularly on what to expect in the future. Many patients were dissatisfied with the information they had received from their medical team and used online resources to fill in gaps, often with less than satisfactory results. Many participants did not have or were unsure if they had an advance directive. Patients often said they knew what it was and that it needed to be done, but did not know how. Several participants who had completed an advanced directive did not include their physician in the process and believed it should be done by the family or a lawyer. Some patients also wanted more information about nutrition, research, clinical trials, and exercise.

Impressions of physicians

In general, patients believed their neurologists were primarily interested in managing their medications and even withheld information about worsening symptoms due to the fear of being prescribed another drug. Some patients held the belief that their neurologist was not interested in advance care planning. Further, some patients did not understand how their neurologist or health care team could assist them with future planning and did not consider including their doctor in the process.

Responses to palliative care

The majority of participants did not have an accurate knowledge of palliative care and often equated palliative care with hospice, advanced cancer, and end of life. However, when educated on palliative care concepts, patients responded positively. Overall, patients were supportive of team-based care and enthusiastic about early palliative care, particularly at the time of diagnosis and with disease progression. Some patients believed that it might be more helpful later in their disease course. Several patients used the term “one-stop shop” and liked the idea of addressing multiple issues during a single visit and individualized care based on patient-specific needs.

DISCUSSION

This study supports recent literature that patients with PD have many unmet needs under current models of care and we propose that many of these needs may be addressed through a palliative care model.^4,5,18–20 The experiences described by participants suggests that the effect of symptoms goes well beyond what clinicians and researchers typically consider, including concerns about the future, finances, personal appearance, identity, and social relationships. This study has implications that extend beyond the realm of PD as there are many similarities with our findings and comments made in other neurology patient populations such as multiple sclerosis.²¹

Patients were receptive to the idea of an outpatient palliative care clinic for PD even early in the course of disease, which is similar to reports from qualitative studies in some but not all chronic illnesses.^14,22 It should be noted that patients with PD are more generally interested in increasing patient-centered care and multidisciplinary care and that our results may be reflective of these broader needs and that many of the needs identified (e.g., educational) may be met in other models of multidisciplinary care.²³ Palliative care may have overlap with other patient-centered models of multidisciplinary care but is distinct in its approach to reducing suffering for the patient and family, incorporation of spiritual and psychosocial well-being, and emphasis on advance care planning. One aspect of our results that echoes our experience in providing outpatient palliative care for patients with PD is that patients are more receptive to palliative care when presented in terms of the actual services provided than when using the term palliative care and many clinics use the term supportive care or complex symptom management to mitigate these biases.

Many patients identified nonmotor symptoms as being their greatest challenges, consistent with multiple prior studies.^24–28 This underscores the need for clinicians to actively screen and manage nonmotor symptoms.²⁹ Notably, a recent case series suggests that a team-based outpatient palliative care program for PD may be efficacious in managing patients with advanced disease with high nonmotor symptom burden.¹⁸

Diagnosis is a particularly traumatic event for many patients and this emotional effect appears to be frequently underestimated by clinicians.³⁰ Similarly, it appears that we are not meeting patients' needs when it comes to education and planning for the future, including advance directives. Several patients also expressed the view that their physician was primarily interested in pushing medications and not in discussing alternative approaches, emotions, future planning, or treating them as individuals.

This study has several limitations. Our intention in conducting this relatively small qualitative study was to generate hypotheses and future studies are needed to fully understand the importance of these findings on a population level. While standard qualitative methods were used for this study, it should be recognized that biases of the research team may influence the results through biases at the level of participant selection, interviews, choice of themes, and presentation of results.

Overall, these results suggest several areas for future research as well as more immediate ways in which to improve care. We do not believe that a single solution can hope to address all issues. For community clinicians, focused education in primary palliative care (skills appropriate to all clinicians including communication of bad news, basic symptom management, and completing advance directives) may result in considerable gains for a large number of patients.³¹ Community-based resources, group classes, patient mentoring programs, and Internet-based materials should be considered to meet educational needs.³² Finally, secondary (community-based) and tertiary (academic) palliative care programs should be developed to address the needs of patients with advanced disease and those with more complex symptom management, psychosocial, and spiritual issues.³¹ Further research is needed to determine the most effective approaches to addressing these needs and prior work in both neurologic and non-neurologic populations may provide a basis for future interventions dependent on the target need(s), the target population (e.g., advanced disease, time of diagnosis), and setting (e.g., rural vs urban).^33–35

AUTHOR CONTRIBUTIONS

I.B.: interpretation of the data, writing of the initial draft, and revision of subsequent drafts. J.J.: interpretation of the data, assistance with revision of subsequent drafts, design and conceptualization of the manuscript. J.C.: assistance with revision of subsequent drafts. D.B.: assistance with revision of subsequent drafts. J.M.: assistance with revision of subsequent drafts. J.K.: assistance with revision of subsequent drafts. B.K.: design and conceptualization of the manuscript, interpretation of the data, and assistance with revision of subsequent drafts.

STUDY FUNDING

VA Eastern Colorado Health Care System Research in Care Coordination Pilot Grant Program (I.B., B.K.), National Institutes of Aging (1 K07 AG030337-01A2; I.B., J.K., B.K.) and Parkinson's Disease Foundation Summer Student Fellowship (PDF-SFW-1560; I.B.).

DISCLOSURE

I. Boersma receives research support from NIH and Parkinson's Disease Foundation. J. Jones has served on the editorial board of the International Journal of Older People Nursing. J. Carter reports no disclosures. D. Bekelman has served on a data safety monitoring board for a PCORI-funded investigator-initiated study that evaluated an advance care planning intervention. J. Miyasaki has received funding for travel and/or speaker honoraria from Teva and Merz; receives publishing royalties from UpToDate; serves as a consultant for Merz; and receives research support from Teva and NIH. J. Kutner has received funding for travel from Informed Medical Decisions Foundation and American Academy for Hospice and Palliative Medicine; serves on the editorial advisory board of Journal of Pain and Symptom Management; receives publishing royalties for Pocket Practice Guidelines in Primary Care (McGraw Hill, 2009); and receives research support from NIH (NHLBI/NCI/NINR), Agency for Healthcare Research and Quality, and American Cancer Society. B. Kluger has received speaker honoraria from Davis Phinney Foundation, Parkinson's Association of the Rockies, and Parkinson's Disease Foundation; serves on the editorial board of Frontiers in Movement Disorders; and receives research support from Teva Pharmaceuticals, US Army Research Laboratory and US Army Research Office, NIH/NINDS, Eastern Colorado Veterans Affairs Medical Center, Michael J. Fox Foundation, University of Colorado Hospital Clinical Effectiveness and Patient Safety Program, and Patient-Centered Outcomes Research Institute. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.