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

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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© The Author(s) 2019.

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Competing interestsDr. Sokol serves as an ad hoc consultant for Tikvah for Parkinson. Dr. Young has nothing to disclose. Mr. Paparian is an employee of Verily Life Sciences, LLC. The opinions expressed herein are those of the author and do not reflect the opinions of Verily Life Sciences, LLC. Dr. Kluger has received support from NINDS, NIA, NINR, the Michael J. Fox Foundation, the Parkinson Foundation, PCORI, the Colorado Clinical and Translational Sciences Institute, and the Davis Phinney Foundation. Dr. Lum is supported in part by the National Institutes of Health (K76AG054782). Dr. Besbris is currently an American Academy of Hospice and Palliative Medicine (AAHPM) Neuropalliative SIG Co-Chair and the American Academy of Neurology Pain and Palliative Section Vice-Chair. Dr. Kramer is currently an American Academy of Hospice and Palliative Medicine (AAHPM) Neuropalliative SIG Co-Chair. Dr. Lang has received consulting fees from AbbVie, Acorda, Bristol-Myers Squibb, Biogen, Merck, Sun Pharma, Corticobasal Solutions, Sunovion, and Paladin, and honoraria from Medichem and Medtronic. Dr. Espay has received grant support from the National Institutes of Health (NIH), Great Lakes Neurotechnologies and the Michael J. Fox Foundation; personal compensation as a consultant/scientific advisory board member for Abbvie, Adamas, Acadia, Acorda, Neuroderm, Impax, Sunovion, Lundbeck, Osmotica Pharmaceutical, and USWorldMeds; publishing royalties from Lippincott Williams & Wilkins, Cambridge University Press, and Springer; and honoraria from USWorldMeds, Lundbeck, Acadia, Sunovion, the American Academy of Neurology, and the Movement Disorders Society. He serves as chair of the MDS Task Force on Technology. Dr. Dubaz has nothing to disclose. Dr. Miyasaki receives grants through PCORI and Parkinson Alberta and is a member of the American Academy of Neurology Board of Directors. Dr. Matlock was a Hartford Geriatrics Health Outcomes Research Scholar. In addition, Dr. Matlock was supported by a career development award from the NIA (1K23AG040696). Dr. Simuni has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Acadia Abbvie Anavex Allergan Avid Civitas Accorda GE Medical Eli Lilly Cynapsus Ibsen IMPAX Merz Inc. National Parkinson Foundation Navidea Sanofi Pfizer Sunovion TEVA UCB Pharma Voyager US World Meds. Dr. Simuni has received research support from Civitas, Acorda, Biogen, Roche Neuroderm. Dr. Cerf has no relevant disclosures related to the paper.