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

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.

A Framework for Anti-Racist Publication in Palliative Care: Structures, Processes, and Outcomes.

Systemic or structural racism describes an embedded pattern of explicit and implicit racial biases that, through policy and action, systematically confer advantage to white people and disadvantage Black, indigenous, and other people of color. Hospice and palliative care journals participate in this broader system of racial discrimination. Building on palliative care's explicit focus on patients' goals and values, which may in and of itself comprise a form of social justice in healthcare, palliative care journals and their publishers have an opportunity to lead others in cultivating anti-racist practices and explicitly promoting equity. The publication life cycle of submission and solicitation, manuscript peer-review, and publication provide a framework for examining the structures, processes, and outcomes by which palliative care and other journals might address systemic racism. We describe the current academic publishing landscape, which diminishes the voices and experiences of racial and ethnic minority patients and undermines the careers of under-represented scholars. We then propose reforms that we believe will improve publication equity and quality as well as healthcare outcomes. These include an Equity in Publication checklist, solicitation of manuscripts on equity-relevant topics, promotion of scholars through editorial structures and peer review processes, and a standard Equity Rating for publications. Greater efforts to include non-dominant voices in every aspect of publication, through appropriate recognition of their scholarship and remuneration for their efforts, will drive equity in health outcomes. By pursuing an anti-racist and equity-focused publishing agenda, hospice and palliative medicine journals and their publishers have an opportunity to transform healthcare.