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Welcome to Hospice & Palliative Care Today, a daily email summarizing numerous topics essential for understanding the current landscape of serious illness and end-of-life care. Teleios Collaborative Network podcasts review Hospice & Palliative Care Today monthly content - explore these and all TCN Talks podcasts.
Saturday newsletters focus on headlines and research - enjoy!
Neurodegenerative disease death certification among National Football League players with dementia
JAMA Network Open; by Charlotte B. Luster, Christopher J. Nowinski, Bobak Abdolmohammadi, Evan D. Feigel, Michael J. Mastrodicasa, Brenna Finegan, Lee Goldstein, Douglas I. Katz, Robert C. Cantu, Brigid Dwyer, Yorghos Tripodis, Thor D. Stein, Michael L. Alosco, Ann C. McKee, Jesse Mez, Daniel H. Daneshvar; 9/26
This cohort study of 202 brain donors found that only 30.7% of former NFL players with clinician-adjudicated dementia had NDD [neurodegenerative disease] listed as the underlying cause of death. This study suggests that NDDs are substantially underascertained on death certificates of former NFL players, which mirrors findings in the general population, suggesting that death certificates may underestimate the true burden of NDD, particularly in less-severe cases. Across 7 investigations, dementia was listed on death certificates for only 7.2% to 41.8% of individuals with documented dementia diagnoses. Similar underascertainment has been reported for Parkinson disease and Alzheimer disease (AD). In a cohort of patients with AD, only 25.5% of death certificates listed AD or dementia as the underlying cause, while 63.5% recorded it as a contributing cause.
Assistant Editor's note: In nursing school many years ago, I never learned much about dementia or AD. It was kind of an "aside diagnosis"--a problem "pertaining to old people", but never the primary diagnosis. It wasn't until I got into hospice care that I realized what a devastating disease it can be, and how it affects many body systems, not just the brain. Of course, it deserves to be a primary terminal illness in and of itself! As noted in this article summary, 63.5% of death certificates list AD or dementia as a contributing cause of death. I'm sure it is indeed a contributing cause of death in some cases. But in other cases, as the article summary suggests, it is likely the primary cause of death and simply not captured as such on the death certificate.
Educating the hospice workforce on pediatric concurrent care: A national workshop approach
Journal of Pain & Symptom Management; by Rakhshanda Ramzan, Lisa C Lindley, Logan Hoover, Jia Liang, Markeya Martin, Salina Temesghen, Meaghann S Weaver; 9/26
Medicaid insures most children at the end of life and mandates concurrent hospice and curative care coverage. Uptake remains inconsistent, partly due to hospice workforce unfamiliarity with the benefit and concerns about compliance. A brief virtual workshop shifted hospice workforce perceptions of pediatric concurrent care, revealing gaps in baseline understanding and increasing awareness of implementation challenges. Findings informed development of a Pediatric Concurrent Care Toolkit and suggest that practical implementation resources, policy guidance, and family-centered communication tools may be needed to improve uptake and access to concurrent care.
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Do not play: Recognizing spiritual distress in serious illness
Journal of Hospice & Palliative Nursing; by Jeanna A Ford; 9/26
Spiritual distress is a significant yet frequently underrecognized component of serious illness and palliative care. Although spirituality is recognized as a core domain of quality palliative care, patients often express spiritual suffering through grief, mistrust, anger, identity, trauma, or existential concerns rather than explicitly religious language. This article explores the role of spiritual assessment and open-ended inquiry in recognizing spiritual distress through the case of an 86-year-old Black male with metastatic prostate cancer who repeatedly refused to answer standardized questions regarding spiritual distress. Although he identified as agnostic, broader conversations revealed profound sources of meaning, suffering, dignity, and peace shaped by experiences of racism, institutional mistrust, family, music, and legacy. The case illustrates how spiritual distress may emerge indirectly and highlights the limitations of relying solely on structured screening tools.
A pilot feasibility study of PAL-CHW-PDAC, a digitally enhanced community health worker-led intervention to facilitate stepped palliative care in patients with pancreatic cancer
Journal of Palliative Medicine; by Nikhil R Thiruvengadam, Maud Celestin-Joachim, Lizbeth Rivas, Nishita Matangi, Arman Bahmani, Matthew Oroso, Joel Brothers, Kendrick Che, Andrew Chang, Emmanuel Eguia, Paul Leonor, Gina Mohr, Raja Narayan, Sagar Pathak, Susanne Montgomery, Betty Ferrell; 9/26
Pancreatic Ductal Adenocarcinoma (PDAC) is associated with substantial morbidity and poor quality of life (QOL). Early palliative care (EPC) has been shown to improve QoL and reduce symptom burden in PDAC, but only a minority of PDAC patients receive it. Using three conceptual models, we developed a community health worker (CHW)-led intervention to help facilitate stepped PC. Ninety-four percent of patients strongly agreed that the intervention was acceptable. Themed common responses highlighted by patients centered around the critically important role of the CHW in their care, especially as symptoms worsened. Patients' physical QoL and symptom burden improved from baseline to 12 weeks, while 83% of patients completed their ACP [advance care planning].
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Respecting spinal cord injury patient autonomy in the context of terminal extubation
Journal of Palliative Care; by Rainy B S Wortelboer, Lauren Hall, Fareea Khaliq; 9/26
Terminal extubation ... is a legally and ethically accepted practice in the United States where mechanical ventilation is withdrawn when ongoing life-sustaining treatment no longer aligns with a patient's stated goals of care. Nearly 42% of intensive care unit deaths involve withdrawal of such measures. Discussions regarding goals of care may be complicated by quality-of-life concerns and potential ableist bias when physical dependence is misinterpreted as incompatible with meaningful life. We present a case-based ethical analysis of an 88-year-old male with traumatic high-level cervical SCI [spinal cord injury] who requested terminal extubation following prolonged hospitalization. After interdisciplinary evaluation confirmed decision-making capacity and with strong family support, he elected hospice care. He was extubated with palliative support and passed 48 h later. This case highlights the intersection of autonomy, capacity, and ethics in end-of-life decisions for patients with SCI and underscores the importance of ethical, patient-centered approaches when considering withdrawal of life-sustaining treatment.
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Ethics and professionalism in artificial intelligence and medical practice: A position paper from the American College of Physicians
Annals of Internal Medicine; by Matthew DeCamp, Lois Snyder Sulmasy, Kyle E. Karches, for the Ethics, Professionalism and Human Rights Committee of the American College of Physicians; 9/26
Artificial intelligence (AI) in health care is being rapidly adopted in perhaps one of the most rapid implementations of technology in medicine to date. Better thought of as augmented intelligence, as a tool that provides assistance to physicians and patients, many guidelines for its use have been issued, but consensus has not yet been achieved on issues such as privacy, disclosure, and fairness. Patients and physicians need ethical guidance at the point of care. Three guideposts described in this American College of Physicians position paper and rooted in the patient–physician relationship—principles of medical ethics, clinical integrity, and physician-independent practical reasoning—can inform the ethical use of AI: relationality, self-governance, and competence. This paper examines the implications of AI for patients, physicians, and health care and provides guidance for its ethical use.
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[Germany] Organ donation and brain preservation after assisted dying: Case report and considerations for a potential pathway
BMC Medical Ethics; by Alexander German, Alexander Grotemeyer, Katharina Koller, Markus Eckstein, Hannes Wolff, Stefan Rampp, Patrick Süß, Vincent C Müller, Dieter Birnbacher, Jürgen Winkler, Martin Regensburger; 9/26
Protecting life and restoring health have been at the core of the conception of medical care since antiquity, for health professionals and the public alike. Assisted dying represents a practice that appears to challenge this traditional conception. In jurisdictions where assisted dying is condoned, the question remains as to whether the practice should be medicalized or deferred to non-medical actors. Irrespective of the divisive controversy surrounding assisted dying and its medicalization per se, the practice gives rise to high-stakes ethical, legal and organizational challenges when intersecting with organ transplantation, tissue banking, and Structural Brain Preservation or cryonics. In this narrative account, we describe the contextual framework and outline our experience and operational scope for addressing them at a university hospital in Germany. Based on this description we propose a structured pathway for increasing donation and preservation options for terminal patients while retaining ethical integrity and professional accountability.
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The Fine Print:
Paywalls: Some links may take readers to articles that either require registration or are behind a paywall. Disclaimer: Hospice & Palliative Care Today provides brief summaries of news stories of interest to hospice, palliative, and end-of-life care professionals (typically taken directly from the source article). Hospice & Palliative Care Today is not responsible or liable for the validity or reliability of information in these articles and directs the reader to authors of the source articles for questions or comments. Additionally, Dr. Cordt Kassner, Publisher, and Dr. Joy Berger, Editor in Chief, welcome your feedback regarding content of Hospice & Palliative Care Today. Unsubscribe: Hospice & Palliative Care Today is a free subscription email. If you believe you have received this email in error, or if you no longer wish to receive Hospice & Palliative Care Today, please unsubscribe here or reply to this email with the message “Unsubscribe”. Thank you.

