Category: Palliative Care
Objective: To describe the knowledge and preferences of people with Parkinson’s (PWP) and care partners (CP) related to outpatient palliative care (PC).
Background: PWP and CP have significant PC needs, however little is known about their preferences and knowledge of PC. There is sufficient support for implementing PC as a new standard of care for PWP and CP. As part of a national project on implementing outpatient PC in Parkinson’s Foundation Centers of Excellence (COE) we operationalized PC as comprising the assessment and management of (1) non-motor symptoms, (2) patient grief/emotional/spiritual needs, (3) CP needs, as well as the (4) completion of annual advance care planning (ACP), and (5) timely referrals to specialist PC and hospice. At the beginning of the project, we wanted to understand patient and family perceptions of how well these PC components were being met.
Method: Using a qualitative descriptive design we completed semi-structured interviews with PWP and CP (n=47- 23 PWP; 24 CP). Interviews were audio-recorded, de-identified, and transcribed. Data were coded and 5 themes were identified.
Results: PWP and CP wanted more education and support to address their PC needs. The following themes related to the 5 PC components were identified: 1) “It’s the non-motor stuff that drives everyone crazy”: PWP felt they lacked knowledge and want more education on non-motor symptoms; 2) “It’s the caring, connection part that is missing”: PWP felt their doctors were competent but were “more clinical and less likely to provide emotional support.” PWP and CP felt that spirituality gave them strength to cope and wanted spiritual support from their care team. 3) Carepartners want more education, guidance, and coping skills: CP expressed a need for more support from clinicians specifically related to PD education, guidance, and coping skills; 4) Advance care planning conversations need to be conversations that happen over time. Both PWP and CP felt ACP was more than completion of advance directives. They preferred clinicians discuss this over a period of time. 5) Is Palliative Care about “End-of-Life” or” Enhancing Quality of Life?”: The difference between PC, end-of-life, and Hospice was unclear. While PWP found PC to be scary, some CP understood PC to support quality of life.
Conclusion: Patients and families perceive gaps in the delivery of the PC and are open to PC approaches to meet these needs.
To cite this abstract in AMA style:M. Dini, S. Seshadri, S. Norton, A. Job, A. Contento, J. Holtrop, N. Yarab, B. Kluger. Understanding Parkinson’s Disease Patients’ and Carepartners’ Palliative Care Knowledge & Preferences [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/understanding-parkinsons-disease-patients-and-carepartners-palliative-care-knowledge-preferences/. Accessed September 22, 2023.
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MDS Abstracts - https://www.mdsabstracts.org/abstract/understanding-parkinsons-disease-patients-and-carepartners-palliative-care-knowledge-preferences/