Family decision-making to withdraw life-sustaining treatments from hospitalized patients

Background: With a national trend toward less aggressive treatment of hospi talized terminally ill patients, families increasingly participate in decis ions to withdraw life-sustaining treatment. Although prior research indicat es decision making is stressful for families, there have been no psychometr ic reports of actual stress levels and few discussions of the reasoning use d 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 asses s factors that affected stress, and to compare families and clinicians on t heir 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 we re collected in individual interviews, shortly after decedent death and 6 m onths later, using psychometric measures and semi-structured interview ques tions. Clinicians were interviewed once shortly following patient death. Results: Family stress associated with the withdraw decision was high immed iately following the death of the decedent and, while it decreased over tim e, 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, endo rsed doing everything medically possible to prolong the patient's life. Conclusions: Findings add compelling evidence for the power of advance dire ctives, whether written or verbal, to reduce the stress associated with fam ily decision-making.