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

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<.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.

Conclusion: 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.

Figure 1

(1.1) Patient-family instrument. (1.2) Patient-physician instrument. Copyright 1999, Johns Hopkins University, illustrations as adapted by Cassio Lymn, Art as Applied to Medicine.

Figure 2

Baseline distribution of decision control preferences of terminally ill patients in the event of decisional incapacity, with respect to physicians and with respect to loved ones. A = most independent, E = most reliant. Control preferences with respect to physicians are more reliant, P<.001.

Figure 3

Temporal changes in mean decision control preference scores with respect to the role physicians should play in decision-making in the event of patient unconsciousness according to patient education level. Lower scores indicate more independence (substituted judgment), higher scores more reliance (best interests), and 3.0 indicates shared decision-making. HS = high school.