The long-term impact of dialysis discontinuation on families.

Background: Little is known about the long-term psychological impact of stopping life support treatments on surviving loved ones.

Objective: The authors sought to determine if there was an increase in pathologic grief in family members left behind after deaths that followed dialysis discontinuation.

Design: Phone interviews were used to collect data on demographics, attitudes, and families' comfort levels with the decision to withdraw dialysis. The Impact of Event Scale was administered to assess adaptation and stress levels. Avoidance and Intrusiveness subscales were calculated and associations with other survey data were examined using chi2 tests and analysis of variance (ANOVA).

Setting/subjects: The authors contacted families in New England who had previously participated in the Baystate Dialysis Discontinuation Study.

Measurements/results: Twenty-six family members (66% of the original study sample) were interviewed approximately 55 months after patient deaths. There was a low overall level of distress and the Avoidance subscale had insufficient variability for analysis. Intrusiveness was highest for spouses and primary caregivers. Only one respondent remembered the death as having been "bad," although 62% of patients were recalled as having suffered distressing symptoms in their last days. In ascending order of importance, respondents characterized good deaths as involving mental alertness, occurring at home, taking place while asleep, being peaceful, happening in the company of loved ones, and being painless or largely painfree. Almost all of the families reported becoming more comfortable with the decision to hasten death than originally.

Conclusions: After nearly 5 years after dialysis discontinuation, families report low levels of distress. A higher frequency of intrusive thoughts was more likely if respondents were spouses or primary caregivers as compared to adult children, siblings, or other relatives. The findings suggest that families successfully adapt to the impact of dialysis withdrawal deaths.