How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study

Daniel P. Sulmasy, Mark T Hughes, Richard Thompson, Alan B. Astrow, Peter Browne Terry, Joan Kub, Marie T Nolan

Research output: Contribution to journalArticle

Abstract

OBJECTIVES: To determine the role terminally ill patients would opt to have their loved ones and physicians play in healthcare decisions should they lose decision-making capacity and how this changes over time. DESIGN: Serial interviews. SETTING: The study institutions were The Johns Hopkins Medical Institutions in Baltimore, Maryland, and St. Vincent's Hospital, in New York. PARTICIPANTS: One hundred forty-seven patients with cancer, amyotrophic lateral sclerosis, or heart failure, at baseline and 3 and 6 months. RESULTS: Patients' baseline decision control preferences varied widely, but most opted for shared decision-making, leaning slightly toward independence from their loved ones. This did not change significantly at 3 or 6 months. Fifty-seven percent opted for the same degree of decision control at 3 months as at baseline. In a generalized estimating equation model adjusted for time, more-independent decision-making was associated with college education (P=.046) and being female (P=.01), whereas more-reliant decision-making was associated with age (P

Original languageEnglish (US)
Pages (from-to)1981-1988
Number of pages8
JournalJournal of the American Geriatrics Society
Volume55
Issue number12
DOIs
StatePublished - Dec 2007

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Terminally Ill
Longitudinal Studies
Decision Making
Baltimore
Amyotrophic Lateral Sclerosis
Heart Failure
Interviews
Delivery of Health Care
Physicians
Education
Neoplasms

Keywords

  • Decision-making
  • Decisional incapacity
  • End of life
  • Ethics
  • Surrogates

ASJC Scopus subject areas

  • Geriatrics and Gerontology

Cite this

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