Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning

BACKGROUND: Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. OBJECTIVE: To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. DESIGN: Qualitative cross-sectional study. PARTICIPANTS: Caregivers of community-dwelling persons age >= 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. APPROACH: In-depth interviews were conducted 6 months after the patient's death with 64 caregivers. Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient's experiences at the end of life. Additional questions asked about how decisions were made, patient-caregiver, patient-clinician, and caregiver-clinician communication. MAIN RESULTS: Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient's illness, and 4) difficulties with patient-caregiver communication. DISCUSSION: The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient-caregiver communication.