Life-sustaining treatment decisions by spouses of patients with Alzheimer's disease.

OBJECTIVE

To examine the anticipated decisions to consent to or to forgo life-sustaining treatment by spouses of patients with Alzheimer's disease and to describe the relationship of spouse and patient characteristics to predicted decisions.

DESIGN

Prospective quantitative study.

SETTING

The Aging and Dementia Research Center (ADRC), part of an Alzheimer's Disease Center Core Grant, at New York University Medical Center.

PARTICIPANTS

Fifty spouse caregivers of Alzheimer's disease patients, evaluated at the ADRC, who had a minimum Stage 4 on the Global Deterioration Scale.

MEASUREMENTS

Spouses were presented with two conditions (critical illness and irreversible coma) and rated their agreement with, certainty of, and comfort with four treatments (resuscitation, breathing machine, feeding tube, and antibiotics). Data were also obtained as to patients' current quality of life, spouses' standard of decision-making, and spouse burden.

RESULTS

Eighteen of 50 patients had a durable power of attorney for health care, 20 of 50 had a living will, and 26 of 50 had neither. In the face of critical illness, almost equal numbers of spouses would consent to or forgo CPR, 28 of 50 would forgo a breathing machine, 21 of 50 a would forgo a feeding tube, and 5 of 50 would forgo antibiotics. Five of 50 would forgo all four treatments, and 12 of 50 all but antibiotics. Spouses were significantly more likely to forgo treatment in the face of coma than for critical illness (P < .001). Spouses were more certain about decisions related to coma than to critical illness (P < .001), and there was a positive and significant correlation between certainty and comfort (P = .001). Those consenting to treatment were more comfortable than those forgoing treatment (for CPR and antibiotics P = .001). Spouses of patients with Stage 7 AD were more likely to forgo CPR than those with Stages 4 to 6 AD (P < .001). Only two of 50 spouses selected descriptors congruent with a purely substituted judgment standard of decision-making. An equal number of spouses rated patient quality of life as good, fair, or poor. For critical illness, the poorer the quality of life rating, the more likely the spouses were to forgo feeding tubes (P < .001). There was a trend for highly burdened spouses to consent to treatment.

CONCLUSIONS

The results provide evidence that spouses of patients with AD anticipate forgoing life-sustaining treatments in the face of coma but are less sure about choices for critical illness. Although preliminary in nature, findings suggest that doctors, nurses, and social workers need to provide additional support to spouses choosing to forgo rather than consent to treatment and need to inquire as to what spouses perceive as the factors that are important to them in making a decision.