Literature Review

Managing competing interests between appointed surrogates and extended family in end-of-life care available to purchaseAmerican Academy of Pediatrics; by Derek R. Soled, Elizabeth Lanphier, Ianthe R.M. Schepel, Maya Scott; 11/25This Ethics Rounds article brings together perspectives from a clinical ethicist, 2 resident physicians in pediatrics, and a social worker on a case involving a terminally ill, intubated, and sedated young adult patient whose health care proxy, extended family, and health care team disagree on the course of her care. Although the proxy, the patient’s adult sister, seems to agree in principle with the health care team’s recommendation to withdraw life-sustaining treatment, she is unwilling to consent to withdrawal due to perceived pressure from her extended family. From an ethics perspective, we discuss the concept of the “marginalized decision-maker” and how to blend the “best interests” approach from pediatric medicine with the “substituted judgment” standard applied in adult medicine when making decisions for incapacitated young adult patients. From a clinical perspective, we explore features of this case that may contribute to feelings of moral distress within the medical team, identify best practices for leading team and family meetings to avoid values imposition and promote shared decision-making, and argue for the importance of training physicians in clinical ethics and reflective skills to improve the quality of patient care and reduce experiences of moral distress in the workplace. Finally, we explore the role that family dynamics, families’ culture and values, and past experiences in the health care system can play in shared decision-making conversations.

Perceived value of transfusion access and hospice services among patients with blood cancersJAMA Network Open; by Hari S. Raman, Angel M. Cronin, Scott F. Huntington, Hajime Uno, Caitlin Brennan, Susan Lysaght Hurley, Anna Tidswell, Richard M. Kaufman, Sarah M. Lanahan,  Kimberly S. Johnson, James A. Tulsky, Gregory A. Abel, Oreofe O. Odejide; 11/25In this survey study, our analysis suggests that for many patients with advanced hematologic cancers, the ability to maintain access to blood transfusions is the primary factor in deciding whether to enroll in hospice. Given that the majority of hospices in the US do not provide transfusion access, patients with blood cancers are faced with the impossible choice of preserving access to palliative transfusions vs accessing quality home-based hospice care. This dichotomy between transfusion access and hospice care may contribute to the low rate of hospice use in this population. Our findings underscore the need to develop and test novel hospice delivery models that combine palliative transfusions with routine hospice services to effectively alleviate discomfort and optimize the QOL [quality of life] of patients with blood cancers near the EOL [end of life].Assistant Editor's note: In the calendar year 2024 data from Medicare Hospice claims indicate that only 3.0% of beneficiaries had a blood cancer diagnosis, per Hospice Analytics. This article suggests some great ideas about how hospice can address the expense of blood transfusions with CMS. But until that happens, hospices could consider approaching their local transfusion center about a contract for a reduced price for blood transfusions for patients in need. Ultimately, this will benefit the hospice, the transfusion center (potentially more patients), and most importantly, the patient.

[Canada] Rethinking palliative care through three institutional ethnographic stories of people living with homelessness and life-limiting illnessINQUIRY: The Journal of Health Care Organization, Provision, & Financing; by Courtney R. Petruik, Katrina Milaney; 11/25Fifteen to thirty percent of Canadians have access to palliative care, with even fewer access opportunities for people with experiences of homelessness. Part of a larger study, this paper examines how health and social systems shape the need for community-based palliative and end-of-life care, using 3 stories from clients of the Community Allied Mobile Palliative Partnership (CAMPP). Findings reveal systemic demands like renewing insurance for medical equipment, restrictive housing rules, and standardized hospital protocols that overwhelm capacities of many people with experiences of homelessness. Community-based palliative teams like CAMPP fill critical gaps in mainstream services by tailoring care to complex social realities.

Impact of prognostic notifications on inpatient advance care planning: A cluster randomized trialJournal of Pain and Symptom Management; by Jessica E Ma, Kayla W Kilpatrick, Clemontina A Davenport, Jonathan Walter, Yvonne Acker, Noppon Setji, Maren K Olsen, Mihir Patel, Michael Gao, Matthew Gardner, Jamie Gollon, Mark Sendak, Suresh Balu, David Casarett;12/25A poor prognosis is an important trigger for advance care planning (ACP) conversations, but clinicians often overestimate prognosis... A pragmatic cluster randomized trial... randomized attending physicians on the inpatient medicine team. An email and page notification was sent to physicians randomized to intervention group for admitted patients at high risk of 30-day and 6-month death based on a machine learning model. The notification recommended to have and document an ACP conversation in the electronic health record (EHR)... Patients of physicians randomized to the intervention group were more likely to have a documented ACP conversation by the randomized physician compared to the control group.

Connecting communities across the globe: Atlas protocol Palliative Care and Social Practice; by Rebecca Newell, Juan Esteban Correa-Morales, Vilma A Tripodoro, Steven Vanderstichelen, Ghauri Aggarwal, Samar Aoun, Erin Das, Farah Demachkieh, James Downar, Silvia Librada, Julieanne Hilbers, Julie Lapenskie, Emmanuel Luyirika, Saif Mohammed, Masanori Mori, Ekkapop Sittiwantana, Libby Sallnow; 12/4/25 ... Eighteen global experts contributed to developing and validating the survey, with 14 of 15 items meeting the Content Validity Index threshold.  ... This protocol addresses a critical gap in Public Health Palliative Care literature by providing an inclusive and participatory method to map the compassionate community's landscape. The resulting data will promote visibility, partnerships and future research, supporting greater recognition of global compassionate communities and their contributions to primary palliative care.

Hospitalization experiences among nursing home residents with dementiaJournal of the American Medical Directors Association; by Jordan M Alpert, Jeffrey D Kovach, Nicholas J Casacchia, David Harris, Ardeshir Hashmi, Luke Dogyun Kim, Silvia Perez-Protto, Matthew A Pappas, Michael B Rothberg; 12/5/25Hospital admissions among nursing home residents with Alzheimer's disease and related dementias (ADRD) are burdensome, expensive, and provide limited clinical benefit. ... Conclusions and implications: Patients undergoing hospital admission suffered distressing experiences, but most patients did not have do-not-resuscitate orders, and referrals to hospice and palliative care were rare. Patients and their family members should be informed about the hospital experience before admission and offered appropriate care services.

Why reflexivity matters in the literature of suffering, death, and dying in eating disordersJournal of Eating Disorders; by Scout Silverstein; 10/25Current debates on medical aid in dying and treatment futility in longstanding eating disorders emphasize diagnostic frameworks, ethical principles, and legal statutes. What remains underexamined is how an author's own experiences with suffering, death, and dying shape their perspective and conclusions. I argue that every manuscript on end-of-life care, decision-making capacity, or futility in eating disorders should include a reflexivity statement detailing the author's relationship to mortality. By mandating reflexivity disclosures alongside ethics and funding statements, journals can enhance transparency and allow readers to contextualize empirical claims and ethical positions. I propose a template for a reflexivity paragraph in which authors succinctly state their clinical or research focus, experiences with suffering, and forces that shape their views on suffering, futility, and dying.

Utilization of the No One Dies Alone Program to support dying patientsJournal of Pain & Symptom Management; by Austin Chen, Ketki Sathe, Yixuan C Zhang, Lyndia C Brumback, Addy L Elketami, Jamie T Nomitch, Timothy J Shipe, Cynthia M Thelen, Katherine G Hicks, Ann L Jennerich; 11/25We conducted a retrospective cohort study of hospitalized patients enrolled in the NODA [No One Dies Alone] program at Harborview Medical Center (HMC), a level I trauma center in Seattle, WA. The No One Dies Alone ... program has utilized trained volunteers to provide support to dying patients for over 20 years.The NODA program was utilized for patients with and without family support. Some patients were unable to benefit from the program due to timing of referral relative to death, highlighting the importance of early consultation to maximize program benefits.

GUIDE and beyond: Strategies for comprehensive dementia care integrationJournal of the American Geriatrics Society; by Kristin Lees Haggerty, David B Reuben, Rebecca Stoeckle, David Bass, Malaz Boustani, Carolyn Clevenger, Ian Kremer, David R Lee, Madelyn Johnson, Morgan J Minyo, Katherine L Possin, Quincy M Samus, Lynn Spragens, Lee A Jennings, Gary Epstein-Lubow; 10/25The Centers for Medicare & Medicaid Services' (CMS) Guiding an Improved Dementia Experience (GUIDE) Model represents a landmark opportunity to improve outcomes for persons with dementia and their caregivers and scale comprehensive dementia care through a structured service delivery and alternative payment approach.  Drawing from the experiences of six previously tested programs ... we describe a four-step approach to enable successful adoption and implementation: identifying key leaders and partners, preparing a tailored value proposition, initiating program start-up, and ensuring sustainable implementation. We highlight practical tools and resources to address operational challenges, including electronic health record integration, reimbursement strategies, and staff training. By focusing on evidence-based models, health systems and other providers can accelerate implementation, reduce costly emergency and institutional care, and deliver high-quality, person-centered support. This approach can help to empower GUIDE participants and others to build effective, durable, scalable comprehensive dementia care systems, ultimately advancing the goal of establishing such care as a permanent Medicare benefit.