Advance care planning in Parkinson’s disease: ethical challenges and future directions

Leonard L. Sokol; Michael J. Young; Jack Paparian; Benzi M. Kluger; Hillary D. Lum; Jessica Besbris; Neha M. Kramer; Anthony E. Lang; Alberto J. Espay; Ornella M. Dubaz; Janis M. Miyasaki; Daniel D. Matlock; Tanya Simuni; Moran Cerf

doi:10.1038/s41531-019-0098-0

Advance care planning in Parkinson’s disease: ethical challenges and future directions

Leonard L. Sokol^*, Michael J. Young, Jack Paparian, Benzi M. Kluger, Hillary D. Lum, Jessica Besbris, Neha M. Kramer, Anthony E. Lang, Alberto J. Espay, Ornella M. Dubaz, Janis M. Miyasaki, Daniel D. Matlock, Tanya Simuni, Moran Cerf

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

40 Scopus citations

Abstract

Recent discoveries support the principle that palliative care may improve the quality of life of patients with Parkinson’s disease and those who care for them. Advance care planning, a component of palliative care, provides a vehicle through which patients, families, and clinicians can collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patient wishes. While research on this topic is abundant in other life-limiting disorders, particularly in oncology, there is a paucity of data in Parkinson’s disease and related neurological disorders. We review and critically evaluate current practices on advance care planning through the analyses of three bioethical challenges pertinent to Parkinson’s disease and propose recommendations for each.

Original language	English (US)
Article number	24
Journal	npj Parkinson's Disease
Volume	5
Issue number	1
DOIs	https://doi.org/10.1038/s41531-019-0098-0
State	Published - Dec 1 2019

ASJC Scopus subject areas

Neurology
Clinical Neurology
Cellular and Molecular Neuroscience

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Sokol, L. L., Young, M. J., Paparian, J., Kluger, B. M., Lum, H. D., Besbris, J., Kramer, N. M., Lang, A. E., Espay, A. J., Dubaz, O. M., Miyasaki, J. M., Matlock, D. D., Simuni, T., & Cerf, M. (2019). Advance care planning in Parkinson’s disease: ethical challenges and future directions. npj Parkinson's Disease, 5(1), Article 24. https://doi.org/10.1038/s41531-019-0098-0

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abstract = "Recent discoveries support the principle that palliative care may improve the quality of life of patients with Parkinson{\textquoteright}s disease and those who care for them. Advance care planning, a component of palliative care, provides a vehicle through which patients, families, and clinicians can collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patient wishes. While research on this topic is abundant in other life-limiting disorders, particularly in oncology, there is a paucity of data in Parkinson{\textquoteright}s disease and related neurological disorders. We review and critically evaluate current practices on advance care planning through the analyses of three bioethical challenges pertinent to Parkinson{\textquoteright}s disease and propose recommendations for each.",

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AU - Sokol, Leonard L.

AU - Young, Michael J.

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AU - Kluger, Benzi M.

AU - Lum, Hillary D.

AU - Besbris, Jessica

AU - Kramer, Neha M.

AU - Lang, Anthony E.

AU - Espay, Alberto J.

AU - Dubaz, Ornella M.

AU - Miyasaki, Janis M.

AU - Matlock, Daniel D.

AU - Simuni, Tanya

AU - Cerf, Moran

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AB - Recent discoveries support the principle that palliative care may improve the quality of life of patients with Parkinson’s disease and those who care for them. Advance care planning, a component of palliative care, provides a vehicle through which patients, families, and clinicians can collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patient wishes. While research on this topic is abundant in other life-limiting disorders, particularly in oncology, there is a paucity of data in Parkinson’s disease and related neurological disorders. We review and critically evaluate current practices on advance care planning through the analyses of three bioethical challenges pertinent to Parkinson’s disease and propose recommendations for each.

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Advance care planning in Parkinson’s disease: ethical challenges and future directions

Abstract

ASJC Scopus subject areas

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