What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life.

OBJECTIVES To determine what questions family caregivers want to discuss with health care providers (HCPs) in order to prepare for the death of a loved one. METHODS Ethnographic interviews and focus groups were used to collect data from current and bereaved caregivers (n=33) of terminally ill patients. Caregivers were asked about: (1) the questions they believe are important to discuss with HCPs in order to prepare for the death, (2) which questions they asked HCPs, and (3) which questions they did not discuss with HCPs. Interviews were audiotaped, transcribed, and analyzed using standard methods. RESULTS Caregivers had a wide spectrum of questions that were categorized as medical, practical, psychosocial, or religious/spiritual in nature. Although caregivers felt comfortable asking most questions, many were not discussed with HCPs, particularly questions about what dying "looked like," medical errors, funeral arrangements, family disagreements, the meaning of illness, and the afterlife. The uncertainty associated with unanswered questions could, in turn, cause distress, even after the death. The primary barriers to asking questions were feeling overwhelmed, "not knowing what to ask," the perception that HCPs were untrustworthy, and worries about being perceived as "ignorant." CONCLUSIONS Family caregivers of patients with terminal illness need more than prognostic information in order to prepare for the death. HCPs should be aware that caregivers may not ask important questions and that unanswered questions may contribute to caregiver distress. Awareness of caregivers' questions can help HCPs improve the care provided to caregivers by better preparing them for the death of their loved one.