Literature Review

Respecting spinal cord injury patient autonomy in the context of terminal extubationJournal of Palliative Care; by Rainy B S Wortelboer, Lauren Hall, Fareea Khaliq; 9/26Terminal 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 is a legally and ethically accepted practice in the United States where mechanical ventilation is withdrawn when ongoing life-sustaining treatment no longer aligns with a patient's stated goals of care.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.

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 cancerJournal 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; 9/26Pancreatic 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].

Educating the hospice workforce on pediatric concurrent care: A national workshop approachJournal of Pain & Symptom Management; by Rakhshanda Ramzan, Lisa C Lindley, Logan Hoover, Jia Liang, Markeya Martin, Salina Temesghen, Meaghann S Weaver; 9/26Medicaid 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.

NIH grant advances research on palliative care at home Indiana University School of Nursing; by Glenda Shaw; 9/23/26 ... A new research project led by Indiana University School of Nursing assistant professor Lyndsay DeGroot, PhD, RN, aims to bring palliative care directly to patients in their homes through a telephone-based program that could make supportive care more accessible for people living with serious chronic illness. To support this work, DeGroot has received a NIH-National Heart, Lung, and Blood Institute (NHLBI) five-year K23 Career Development Award totaling $916,000. The award will fund her project, “Implementing Community-Based Palliative Care for Adults with Heart Failure or Chronic Obstructive Pulmonary Disease.”

Core addiction skills training in hospice and palliative medicine fellowships: A national survey addiction skills training in HPM fellowshipsJournal of Pain & Symptom Management; by J Janet Ho, Steven Z Pantilat, Julie W Childers; 8/26Hospice and palliative medicine (HPM) clinicians increasingly care for patients with serious illness and prolonged opioid exposure, yet often report limited training managing consequences like opioid misuse or opioid use disorder (OUD). PDs [program directors] perceived that fellows have low confidence with opioid misuse or OUD, despite commonly encountering such patients. Most programs offered limited training (2-3 hours), though many provided electives. Fewer than 20% of programs had faculty with formal addiction training, and 25% reported no faculty with buprenorphine experience. Conclusion: Despite broad recognition of the importance of core addiction skills, a shortage of faculty expertise constrains education in HPM physician fellowships.

Default hospice consultation in comfort measures orders and hospice engagementJAMA Network Open; by L. Scott Sussman, John M. Henderson, Nancy Kim; 8/26Hospice improves end-of-life care quality yet remains underutilized, with persistent racial and ethnic access disparities. In this quality improvement study, embedding hospice consultation within CMO [comfort measures only] orders was associated with substantial and sustained increases in hospice engagement. Because hospice enrollment cannot occur without consultation, improving consult reliability represents a meaningful intervention. This project embedded hospice consideration directly into an existing clinical transition rather than relying on interruptive alerts or educational efforts alone. These findings contribute to evidence that EHR [electronic health record]-based behavioral nudges can guide clinicians in time-sensitive, high-stakes settings.

Wearable technology to monitor cancer caregivers' health and well-being: A systematic reviewHealth Sciences Review; by M. Courtney Hughes, Michelle L. Foster, Christy Muasher-Kerwin, Samantha M. Econie; 12/26Cancer caregivers often experience significant physical and emotional strain. Wearable technology enables real-time tracking of caregiver stress, physical activity, and sleep. This review examined how wearable technology has been used to monitor cancer caregivers' health and well-being, including the outcomes measured and tools used.

Missed opportunities for goals-of-care conversations in a patient with end-stage juvenile Huntington’s disease: A case reportAmerican Journal of Hospice & Palliative Medicine; by Ignacio Borque, Nuria Perez ´ de Lucas, Alicia Gonzalez, Eduardo Bruera; 8/26Juvenile Huntington’s disease (JHD) is a rare, severe neurodegenerative disorder with early onset, high symptom burden, and a predictable trajectory toward advanced disability and premature death. Despite this, goals-of-care (GOC) conversations and advance care planning are often delayed, leading to reactive, crisis-driven decisions and increased emotional burden for families and clinicians. We present a 30-year-old woman with genetically confirmed JHD, diagnosed at age 14, who declined progressively over more than 15 years. Despite longstanding neurological follow-up and repeated hospital admissions, palliative care referral occurred only 20 days before death. Late palliative care integration limited anticipatory planning and shifted complex decisions into a stage with little room for deliberation, when cognitive and clinical deterioration constrained meaningful participation.