Out-of-hospital death: Advance care planning, decedent symptoms, and caregiver burden

Objectives: To examine the end-of-life experiences of elderly decedents dying out of the hospital and their family caregivers in a state in which the vast majority of Medicare deaths occur in community settings. Design: Telephone survey of family caregivers 2 to 5 months after decedents' deaths. Setting: Statewide (Oregon) random sample of death certificates. Participants: One thousand one hundred eighty-nine family caregivers of decedents aged 65 and older who died of natural deaths in community settings between 2000 and 2002. Measurements: A 69-item telephone questionnaire with single-item indicators and embedded scales that indexed advance directives, use of life-sustaining treatments, hospice enrollment, decedent symptom experience and perceived distress, family financial hardship, out-of-pocket expenses, and caregiver strain. Results: Most decedents had advance directives (78.3%) and were enrolled in hospice (62.4%). Although perceived decedent symptom distress was low overall, certain symptoms (e.g., pain, dyspnea, constipation) were distressing for approximately half of decedents experiencing them. Financial hardship, out-of-pocket expenses, and caregiver strain were frequently reported. American Indian race and younger age were associated with decedent symptom distress. Greater perceived decedent symptom distress, hospice enrollment, more caregiver involvement, and more financial burden were associated with greater caregiver strain. Conclusion: Despite high rates of advance directives and hospice enrollment, perceived symptom distress was high for a subset of decedents, and caregiver strain was common. As location of death increasingly shifts nationwide from hospital to community, unmet decedent and family needs require new clinical skills and healthcare policies.