Background: With a national trend toward less aggressive treatment of hospitalized terminally ill patients, families increasingly participate in decisions to withdraw life-sustaining treatment. Although prior research indicates decision making is stressful for families, there have been no psychometric reports of actual stress levels and few discussions of the reasoning used by families compared to clinicians in reaching the decision.
Objectives: The purpose of this study was to assess levels of family stress associated with decisions to withdraw life-sustaining treatments, to assess factors that affected stress, and to compare families and clinicians on their reasoning about the decision.
Methods: Data were collected from hospital decedent charts, family members of decedents, and clinicians who cared for decedents. Data from families were collected in individual interviews, shortly after decedent death and 6 months later, using psychometric measures and semi-structured interview questions. Clinicians were interviewed once shortly following patient death.
Results: Family stress associated with the withdraw decision was high immediately following the death of the decedent and, while it decreased over time, remained high a half a year later. Several factors affected stress; most notably, stress was highest in the absence of patient advance directives. In reaching the decision, both families and clinicians prioritized what the patient would want, although families, more strongly than clinicians, endorsed doing everything medically possible to prolong the patient's life.
Conclusions: Findings add compelling evidence for the power of advance directives, whether written or verbal, to reduce the stress associated with family decision-making.