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Journal of Aging and Health
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Content of Advance Directives for Individuals With Advanced Dementia

Patrick Triplett, MD

Johns Hopkins University School of Medicine, ptriple{at}jhmi.edu

Betty S. Black, PhD

Johns Hopkins University School of Medicine

Hilary Phillips, MA

Columbia, Maryland

Sarah Richardson Fahrendorf, JD

AEGON Direct Marketing Services

Jack Schwartz, JD

Maryland Attorney General's Office

Andrew F. Angelino, MD

Johns Hopkins University School of Medicine

Danielle Anderson, MD

Peter V. Rabins, MD, MPH

Johns Hopkins University School of Medicine

Objectives: To examine how people with end-stage dementia have conveyed their wishes for end-of-life care in advance directives. Method: The documents of 123 residents of three Maryland nursing homes, all with end-stage dementia, were reviewed. Results: More years of education and White race were significantly associated with having an advance directive. With the exceptions of comfort care and pain treatment, advance directives were used primarily to restrict, not request, many forms of care at the end of life. Decisions about care for end-stage conditions such as Alzheimer's dementia are less often addressed in these documents than for terminal conditions and persistent vegetative state. Discussion: For advance directives to better reflect a person's wishes, discussions with individuals and families about advance directives should include a range of care issues in the settings of terminal illness, persistent vegetative state or end-stage illness. These documents should be reviewed periodically to make certain that they convey accurately the person's treatment preferences.

Key Words: living will • treatment preferences • end-stage dementia • end of life • health care decisions

Journal of Aging and Health, Vol. 20, No. 5, 583-596 (2008)
DOI: 10.1177/0898264308317822
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B. S. Black, L. A. Fogarty, H. Phillips, T. Finucane, D. J. Loreck, A. Baker, D. M. Blass, and P. V. Rabins
Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care
J Aging Health, June 1, 2009; 21(4): 627 - 650.
[Abstract] [PDF]