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


METHODS
Serial interviews.


METHODS
The study institutions were The Johns Hopkins Medical Institutions in Baltimore, Maryland, and St. Vincent's Hospital, in New York.


METHODS
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<.001). Patients leaned toward more reliance upon physicians to make best-interest determinations at diagnosis but opted for physicians to decide based upon their own independent wishes (substituted judgment) over time, especially if college educated.


CONCLUSIONS
Terminally ill patients vary in how much they wish their own preferences to control decisions made on their behalf, but most would opt for shared decision-making with loved ones and physicians. Control preferences are stable over time with respect to loved ones, but as they live longer with their illnesses, patients prefer somewhat less reliance upon physicians.
Sulmasy
Daniel P
DP
Department of Ethics, St. Vincent's Hospital, New York, New York 10011, USA. daniel_sulmasy@nymc.edu
Hughes
Mark T
MT
Thompson
Richard E
RE
Astrow
Alan B
AB
Terry
Peter B
PB
Kub
Joan
J
Nolan
Marie T
MT
D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology; D002755:Choice Behavior; D003657:Decision Making; D005260:Female; D006333:Heart Failure / Q000523:psychology; D006801:Humans; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008297:Male; D016743:Mental Competency; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology; D012044:Regression Analysis; D011795:Surveys and Questionnaires; D019452:Terminally Ill / Q000523:psychology*; D020458:Third-Party Consent