ABSTRACT
CONTEXT: Interventions to improve the quality of care for people affected by serious illness commonly fail to reach patients from marginalized and underserved communities, which include those characterized by racialized or indigenous identity, sexual and gender minority status, and rural living. Interventions to improve care through serious illness conversations have demonstrated benefit, but little is known about their implementation in health systems that predominantly serve these patient groups. OBJECTIVES: The study aimed to understand factors influencing implementation of a serious illness communication-focused intervention-the Serious Illness Care Program in health systems who primarily provide care to marginalized and underserved communities. METHODS: Qualitative interviews (16) and focus groups (3) were conducted with 19 interdisciplinary team members from six geographically diverse U.S. healthcare systems. Using a template analysis approach, investigators coded data inductively and deductively to identify themes. RESULTS: Three themes emerged: patient factors, intervention elements, and health system contextual factors. Participants highlighted mission-driven efforts, creativity, interprofessional practice, and trainees as enablers of success. They identified weaknesses in the intervention's communication tool-the Serious Illness Conversation Guide as barriers to implementation of conversations. Resource constraints, socio-economic vulnerability, and mistrust in the health system were seen as additional barriers. CONCLUSIONS: Health systems that provide care to underserved and marginalized communities face unique challenges implementing the Serious Illness Care Program. They also possess assets, some unique to these settings, that support program adoption. Findings suggest that implementation of similar programs in low-resource healthcare settings may help address unmet needs among marginalized populations.
ABSTRACT
Objectives: We evaluated the What Matters to Me Workbook, a patient-facing version of the Serious Illness Conversation Guide co-created by Ariadne Labs and The Conversation Project. Methods: We purposively recruited diverse seriously ill patients and caregivers in the US. Participants completed the Workbook, a survey, and a semi-structured in-depth interview about their experience. Qualitative analysis of interviews and notes was employed to extract themes. Simple descriptive statistics were employed to analyze eight investigator authored questions. Results: Twenty-nine study participants completed twenty-one interviews and twenty-five surveys. Ratings for safety (3.87/4, SD = 0.43) and acceptability (3.59/4, SD = 0.956) were higher than ratings for ease of use (3.30/4, SD = 0.97) and usefulness (3.24/4, SD = 0.80). Qualitative analysis identified that while the workbook was safe, acceptable, easy to use, and useful, it is more important who is recommending it and how they are explaining it. Conclusion: If presented in the right way by a trustworthy person, the What Matters to Me Workbook can be an easy to use, useful, and safe resource for patients with serious illness and their caregivers. Innovation: The Workbook focuses on serious illness rather than end-of-life and meshes with a clinician-facing conversation guide and a health-system level intervention.
ABSTRACT
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.
