“I think that she would have wanted.”: Qualitative interviews with bereaved caregivers reveal complexity in measuring goal-concordant care at the end of life

Abstract

Background: Experts consider goal-concordant care an important healthcare outcome for individuals with serious illness. Despite their relationship to the patient and knowledge about the patient’s wishes and values, little is known about bereaved family caregivers’ perceptions of how end-of-life care aligns with patient goals and preferences. Aim: To understand caregivers’ perceptions about patients’ care experiences, the extent to which care was perceived as goal-concordant, and the factors that contextualized the end-of-life care experience. Design: Qualitative interview study employing a semi-structured interview guide based on the National Health and Aging Trends Survey end-of-life planning module. Template analysis was used to identify themes. Setting/participants: Nineteen recently bereaved family caregivers of people with serious illness in two academic medical centers in the Northeastern United States. Results: Most caregivers reported goal-concordant care, though many also recalled experiences of goal discordance. Three themes characterized care perceptions and related to perceived quality: communication, relationships and humanistic care, and care transitions. Within communication, caregivers described the importance of clear communication, inadequate prognostic communication, and information gaps that undermined caregiver confidence in decision making. Patient-clinician relationships enriched care and were considered higher-quality when felt to be humanistic. Finally, care transitions impacted goal discordance when marked by logistical barriers, a need to establish relationships with new providers, inadequate information transfer, and poor care coordination. Conclusions: Bereaved caregivers commonly rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Communication, relationships and humanistic care, and care transitions are modifiable quality improvement targets for patients with advanced cancer.