163 Background: Experts recognize goal-concordant care (GCC) as among the most important outcomes for those with advanced cancer. Despite a conceptual understanding about ways to measure goal-concordant care, we know little about what patient experiences align perceptions of goal concordance. Caregivers’ close proximity to patients give them a unique perspective on what factors contribute to perceived goal concordance. Methods: We conducted semi-structured interviews with 19 recently bereaved family caregivers of those with cancer to understand their experience of care, the extent to which they felt it was goal-concordant, and the factors of care which contextualized their experience. Caregivers were interviewed using a semi-structured guide based on the end-of-life planning module in Round 2 of the National Health and Aging Trends Survey (NHATS). We used template analysis to identify themes across the 19 interviews. Results: Most caregivers reported goal-concordant care when prompted, though many also recalled moments of goal discordance. Three high-level themes characterized their care perceptions: communication, relationships and humanistic care, and care transitions. Sub-themes of communication included clinician communication quality, prognostic communication, and information gaps. First, clear and transparent clinician communication facilitated GCC and high-quality care. Prognostic communication that did not align to patient preferences or consider patient hope was seen as harmful. Information gaps inhibited high-quality care as well as caregivers’ confidence that decisions were goal concordant. Second, relationships between patients and their clinicians enriched care, and humanistic care was seen as higher-quality. Lastly, logistical barriers, the need for relationship rebuilding, uncertain information communication, and a general lack of coordination characterized perceptions around care transitions and goal discordance. In particular, several caregivers noted issues and inter-specialty tensions around transitions specifically involving hospice. Conclusions: Caregivers consistently rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Measures that capture goal-concordant care may be subject to psychological bias and may not clearly align with or predict other measures of care quality. Communication, relationships and humanistic care, and care transitions are all modifiable targets for quality improvement and deserve clear attention for patients with advanced cancer.
Ensuring continuous high-quality care for people with impaired cognition including dementia at the end of life
