Ethical implications of medical crowdfunding: the case of Charlie Gard.

Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, crowdfunding was used to finance experimental nucleoside therapy. Although this treatment was not provided in the end, we will argue that the success of the Gard family's crowdfunding campaign reveals a number of potential ethical concerns. First, this case shows that crowdfunding can change the way in which communal healthcare resources are allocated. Second, within the UK's National Health Service, healthcare is ostensibly not a market resource; thus, permitting crowdfunding introduces market norms that could commodify healthcare. Third, pressures inherent to receiving funds from external parties may threaten the ability of patients-cum-recipients to voluntarily consent to treatment. We conclude that while crowdfunding itself is not unethical, its use can have unforeseen consequences that may influence conceptions of healthcare and how it is delivered.

"Are They Saying It How I'm Saying It?" A Qualitative Study of Language Barriers and Disparities in Hospice Enrollment.

CONTEXT: Language barriers contribute significantly to disparities in end-of-life (EOL) care. However, the mechanisms by which these barriers impact hospice care remains underexamined. OBJECTIVES: To gain a nuanced understanding of how language barriers and interpretation contribute to disparities in hospice enrollment and hospice care for patients with limited English proficiency. METHODS: Qualitative, individual interviews were conducted with a variety of stakeholders regarding barriers to quality EOL care in diverse patient populations. Interviews were audiorecorded and transcribed verbatim. Data were coded using NVivo 11 (QSR International Pty Ltd., Melbourne, Australia). Three researchers analyzed all data related to language barriers, first individually, then in group meetings, using a grounded theory approach, until they reached consensus regarding themes. Institutional review board approval was obtained. RESULTS: Twenty-two participants included six nurses/certified nursing assistants, five physicians, three administrators, three social workers, three patient caregivers, and two chaplains, self-identifying from a variety of racial/ethnic backgrounds. Three themes emerged regarding language barriers: 1) structural barriers inhibit access to interpreters; 2) variability in accuracy of translation of EOL concepts exacerbates language barriers; and 3) interpreters' style and manner influence communication efficacy during complex conversations about prognosis, goals of care, and hospice. Our theoretical model derived from the data suggests that Theme 1 is foundational and common to other medical settings. However, Theme 2 and particularly Theme 3 appear especially critical for hospice enrollment and care. CONCLUSION: Language barriers present unique challenges in hospice care because of the nuance and compassion required for delicate goals of care and EOL conversations. Reducing disparities requires addressing each level of this multilayered barrier.

"It's Case by Case, and It's a Struggle": A Qualitative Study of Hospice Practices, Perspectives, and Ethical Dilemmas When Caring for Hospice Enrollees with Full-Code Status or Intensive Treatment Preferences.

Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code. Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments. Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method. Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences. Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.

"Goals of Care Conversations Don't Fit in a Box": Hospice Staff Experiences and Perceptions of Advance Care Planning Quality Measurement.

CONTEXT: With rising concerns about quality of care in hospice, federal agencies recently began mandating quality measurement in hospice, including measures of advance care planning (ACP). OBJECTIVES: To characterize hospice providers' experiences with ACP quality measurement and their reflections on ways to improve it. METHODS: Semi-structured in-depth interviews of fifty-one hospice providers from various clinical backgrounds and organizational roles in four geographically diverse non-profit, community-based hospices in the U.S. Participants were queried about their experiences with and barriers to ACP quality measurement processes in their organization, opinions about the impacts of federally mandated quality measures, and ideas for improvement. Data were analyzed using thematic analysis with an interdisciplinary team, facilitated by ATLAS.ti and Excel. RESULTS: Four key findings of the ACP quality measurement experience for hospice staff included variation, barriers, attitudes, and recommendations for improvement. 1) Variation: Within and across organizations, participants applied a variety of processes to measure ACP quality, and exposure to and experiences with quality measurement varied based on organizational role. 2) Barriers: ACP quality measurement was impeded by limited resources, technological problems, and measurement challenges. 3) Attitudes: Participants' opinions of recently implemented federally mandated requirements for ACP quality measurement highlighted numerous downsides, unintended consequences, and few upsides. 4) Recommendations: improvements included personalizing ACP quality measures, elevating the importance of quality measurement, and streamlining processes. CONCLUSION: Hospice staff take ACP quality measurement seriously, but insufficient organizational resources and regulatory bureaucracy create challenges. Efforts to enhance ACP quality measure nuance and assess outcomes are needed to improve care.

Up from the Streets: The RI Medical Navigator Partnership as a Model of Structurally-Informed Service, Education, and Advocacy.

The Rhode Island Medical Navigator Partnership (RIMNP) is an interdisciplinary student organization homed at the Warren Alpert Medical School of Brown University with the tripartite mission of (1) improving access to care for patients experiencing homelessness, (2) sensitizing students to issues of homelessness through experiential learning, and (3) providing educational opportunities for providers. Centered on the lived experiences of people who are homeless, the RIMNP aims to combat structural violence and foster providers' structural competence through integrated direct service and advocacy. This article describes the RIMNP's efforts to bridge gaps in the health and social services landscape in Rhode Island, and ultimately concludes with a discussion of how similar models may be implemented at other academic institutions.