Literature Review

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.

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.

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.

Respecting the right to refuse: Is decision-making capacity disproportionately challenged in patients declining medical care in order to treat?Journal of Neurosurgery: Case Lessons; by Jacqueline Boyle, Nicholas Comardelle, Alexis Carter, Jeffrey Klopfenstein, Todd McCall; 10/25There is a consensus that withholding aggressive medical care in medically futile situations is ethically sound, even if the patient, surrogate, or family wants everything done. The authors aim to evaluate and discuss the situations in which this request is used as justification for intervention, specifically lifesaving surgery, when a situation is defined by a futile outcome. The authors utilize the illustrative case of an older female who presented with a traumatic brain injury and Duret hemorrhage, an unfortunately common scenario faced by neurosurgeons, to discuss the complex ethical and practical implications of these situations. They seek to define futility, provide an overview of basic medical ethical principles, and evaluate both the motivation to operate and the educational gaps among patients, families, and providers. Review of the basic principles of medical ethics lends to the conclusion that the demands of a patient’s family are not adequate justification for surgical intervention in cases, such as the present one, in which a patient is unlikely to benefit.

Slow-tempo music and delirium/coma-free days among older adults undergoing mechanical ventilation-A randomized clinical trialJAMA Internal Medicine; by Babar A. Khan, Sikandar H. Khan, Anthony J. Perkins, Annie Heiderscheit, Frederick W. Unverzagt, Sophia Wang, J. Hunter Downs III, Sujuan Gao, Linda L. Chlan; 10/25Objective: To determine if a slow-tempo music (60-80 beats/min) listening intervention decreases delirium duration, delirium severity, pain, or anxiety in older adults undergoing mechanical ventilation. In this randomized clinical trial of 158 mechanically ventilated older adults, a twice-daily music intervention delivered via noise-canceling headphones and tablets for up to 7 days did not demonstrate a statistically significant decrease in delirium duration, delirium severity, pain, or anxiety.

Heart failure with reduced ejection fractionMedical Clinics of North America; by Ebrahim Barkoudah, Clyde W Yancy; 11/25Heart failure (HF) is no longer centered on the failing ventricle. Various salutary treatment discoveries now support substantially improved survival with lesser likelihood for urgent care or hospitalization. Advanced care strategies are effective, but not only includes mechanical circulatory assist and heart transplantation, but also clinical trial participation, palliative care, and hospice. At the patient level, longer healthier lives, in concert with expert management of ventricular dysfunction, becomes the contemporary expectation.

Errors in electronic health record advance care planning documentation: It's a patient safety issueJournal of Palliative Medicine; by Seth N Randa, Sarah Nouri, Anne M Walling, Kanan Patel, Mike K W Cheng, Christine S Ritchie, Brookelle Li, Gabriela Vanegas, Elle Cardoso, Rebecca L Sudore; 11/25Centralized locations in the electronic health record (EHR) improve access to advance care planning (ACP) information; however, the prevalence of documentation errors in these locations is unknown... Among 10,767 patients, 5374 (49.9%) had ACP in their EHR, and 495 (9.2%) of those had a verified error; 32.9% were Patient Safety Errors. Patients with errors were more likely to self-identify as from a minoritized population, be non-English speaking, and have a serious illness.

Tellable and untellable stories in suffering and palliative careMortality; by Maxxine Rattner; 3/19The relief of patients’ suffering – both physical and non-physical – is a primary aim of palliative care, and has been described as an obligation and ethical duty for palliative care providers. This paper suggests that common approaches to relieving patients’ non-physical suffering – such as creating opportunities to make meaning, achieve personal growth, and hone one’s resiliencies – comprise the larger, more tellable part of the palliative care discourse. A more marginal, less tellable part of the discourse acknowledges that some non-physical suffering cannot necessarily be relieved.Publisher's note: Though dated, this article offers an honest perspective on the profound challenge of alleviating suffering, and the essential lesson of humble grace when relief is not possible.