LIFE-SUSTAINING TREATMENT DECISIONS BY SPOUSES OF PATIENTS WITH ALZHEIMERS-DISEASE

OBJECTIVE: To examine the anticipated decisions to consent to or to fo rgo life-sustaining treatment by spouses of patients with Alzheimer's disease and to describe the relationship of spouse and patient charact eristics to predicted decisions. DESIGN: Prospective quantitative stud y. 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 p atients, evaluated at the ADRC, who had a minimum Stage 4 on the Globa l Deterioration Scale. MEASUREMENTS: Spouses were presented with two c onditions (critical illness and irreversible coma) and rated their agr eement with, certainty of, and comfort with four treatments (resuscita tion, breathing machine, feeding tube, and antibiotics). Data were als o obtained as to patients' current quality of life, spouses' standard of decision-making, and spouse burden. RESULTS: Eighteen of 50 patient s had a durable power of attorney for health care, 20 of 50 had a livi ng will, and 26 of 50 had neither. In the face of critical illness, al most 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 significan tly more likely to forgo treatment in the face of coma than for critic al illness (P < .001). Spouses were more certain about decisions relat ed to coma than to critical illness (P < .001), and there was a positi ve and significant correlation between certainty and comfort (P = .001 ). Those consenting to treatment were more comfortable than those forg oing 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 cong ruent 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 wi th AD anticipate forgoing life-sustaining treatments in the face of co ma but are less sure about choices for critical illness. Although prel iminary in nature, findings suggest that doctors, nurses, and social w orkers need to provide additional support to spouses choosing to forgo rather than consent to treatment and need to inquire as to what spous es perceive as the factors that are important to them in making a deci sion.