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

被引：36

作者：

Sokol, Leonard L. ^{[1
,2
,3
]}

Young, Michael J. ^{[4
]}

Paparian, Jack

Kluger, Benzi M. ^{[5
]}

Lum, Hillary D. ^{[6
,7
]}

Besbris, Jessica ^{[8
,9
]}

Kramer, Neha M. ^{[10
,11
]}

Lang, Anthony E. ^{[12
,13
]}

Espay, Alberto J. ^{[14
]}

Dubaz, Ornella M. ^{[1
,15
]}

Miyasaki, Janis M. ^{[16
,17
]}

Matlock, Daniel D. ^{[6
,7
]}

Simuni, Tanya ^{[1
]}

Cerf, Moran ^{[18
,19
]}

机构：

[1] Northwestern Univ, Feinberg Sch Med, Ken & Ruth Davee Dept Neurol, Chicago, IL 60611 USA

[2] Northwestern Univ, Feinberg Sch Med, McGaw Bioeth Scholars Program, Ctr Bioeth & Humanities, Chicago, IL 60611 USA

[3] Northwestern Univ, Feinberg Sch Med, Dept Med, Chicago, IL 60611 USA

[4] Harvard Med Sch, Dept Neurol, Massachusetts Gen Hosp, Boston, MA 02115 USA

[5] Univ Colorado, Sch Med, Dept Neurol, Div Neuropallait Care, Aurora, CO USA

[6] Univ Colorado, Sch Med, Eastern Colorado VA Geriatr Res Educ & Clin Ctr, Aurora, CO USA

[7] Univ Colorado, Sch Med, Div Geriatr Med, Dept Med, Aurora, CO USA

[8] Cedars Sinai Med Ctr, Dept Neurol, Los Angeles, CA 90048 USA

[9] Cedars Sinai Med Ctr, Dept Support Care Med, Los Angeles, CA 90048 USA

[10] Rush Univ, Sch Med, Dept Med, Sect Palliat Med, Chicago, IL 60612 USA

[11] Rush Univ, Sch Med, Dept Neurol, Chicago, IL 60612 USA

[12] Univ Toronto, Edmond J Safra Program Parkinsons Dis, Univ Hlth Network, Toronto, ON, Canada

[13] Univ Toronto, Morton & Gloria Shulman Movement Disorders Clin, Univ Hlth Network, Toronto, ON, Canada

[14] Univ Cincinnati, Coll Med, Dept Neurol, Gardner Family Ctr Parkinsons Dis & Movement Diso, Cincinnati, OH USA

[15] Harvard Med Sch, Beth Israel Deaconess Med Ctr, Dept Neurol, Boston, MA 02115 USA

[16] Univ Alberta, Dept Med, Div Neurol, Parkinson & Movement Disorders Program, Edmonton, AB, Canada

[17] Univ Alberta, Complex Neurol Symptoms Clin, Kaye Edmonton Clin, Edmonton, AB, Canada

[18] Northwestern Univ, Interdept Neurosci Program, Evanston, IL USA

[19] Northwestern Univ, Kellogg Sch Management, Evanston, IL USA

来源：

NPJ PARKINSONS DISEASE | 2019年 / 5卷 / 01期

关键词：

END-OF-LIFE; DEEP BRAIN-STIMULATION; DISABILITY PARADOX; DECISION-MAKING; PATIENT; PREFERENCES; COMMUNICATION; NEUROSURGERY; BARRIERS; QUALITY;

D O I：

10.1038/s41531-019-0098-0

中图分类号：

Q189 [神经科学];

学科分类号：

071006 ;

摘要：

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.

引用

页数：7

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