Literature Review

[UK] Use of HidraWear in a malignant fungating wound at end of life: A case studyWounds UK; by Alison Schofield; 9/25Malignant wounds are a devastating complication associated with cancer, which are challenging to manage and can be distressing for patients, family members and healthcare professionals (HCPs). Management of malignant wounds can differ significantly from that of any other wound type, particularly as they often occur at end of life. Increased awareness and communication around this difficult wound type is needed, including case studies and sharing of HCPs’ experiences. This case study describes the treatment of an end-of-life patient in a hospice setting, with a challenging malignant fungating wound (MFW). This case highlights the importance of palliative symptom management and the benefits of using HidraWear in practice.

The National Dementia Workforce Study: The plan for organization sample frames and data collectionJournal of the American Geriatrics Society; by James Wagner, Laura M Wagner, Sheryl Zimmerman, Johanna van Tyen Silbersack Hickey, Kate Stewart, Sandi Nelson, Ji Qi, Raphael Nishimura, Piotr Dworak, Margaret Hudson, Jennifer Kelley, Heidi Guyer, Amy R Pettit, Donovan T Maust, Joanne Spetz; 9/25The National Dementia Workforce Study was designed to improve our understanding of the individuals and systems who care for people with dementia, but designing and implementing such a study is challenging due to the large number of patient care organizations, clinical and direct care roles, and locations in which care is provided. While there are national sampling frames available for federally certified nursing homes (i.e., via data from the Center for Medicare and Medicaid Services), there are no national sampling frames for assisted living communities or home care agencies. We describe the plan for sampling and recruitment procedures to be used in each stage and discuss limitations, including implications for coverage of the target population. Data collected through these surveys will be available to the research community.

Stiff person syndrome in the hospice patient: A case report and discussion  Journal of Palliative Medicine; by Molly Svendsen, B Parker Layton, Shiri Etzioni, Mark Edwin; 10/13/25 Stiff Person Syndrome (SPS) is a rare, progressive autoimmune neurological disorder characterized by painful spasms, muscle rigidity, and heightened sensitivity to external stimuli. Management often relies on therapies that fall outside standard hospice formularies, creating challenges in end-of-life care for affected individuals. ... This case highlights the need for flexible, patient-centered approaches in hospice care for rare neurological conditions like SPS. Continuation of disease-specific therapies for symptom palliation can be ethically and clinically appropriate when integrated with clear goals of care. 

Beyond bars: Evaluating end-of-life care and surrogate decision-making for hospitalized incarcerated personsJournal of Palliative Medicine; by Zack Watson, Julie Brown, Abhinav Vyas, Stacey Tillman, Sumi Misra, Rajiv Agarwal, Cheryl Gatto, Allison McCarthy, Mohana Karlekar; 9/25Incarcerated persons (IPs) retain the constitutional right to health care, yet they face unique challenges in accessing palliative care (PC) and designating surrogates, especially when incapacitated. We present two cases of hospitalized IPs with life-limiting illnesses who experienced significant barriers in identifying and engaging surrogates. Both cases underscore the effect of delays in communication with surrogates and restricted end-of-life (EOL) visitation due to correctional policies. These delays limited the delivery of optimal interdisciplinary PC and bereavement support. Despite clear legal guidance under the Tennessee Health Care Decisions Act, misinformation and procedural ambiguity among medical and correctional staff impeded timely and appropriate care.

Implementation of the Age-Friendly Health Systems Initiative in the Department of Veterans Affairs: 5 years of improving quality for older veteransINQUIRY: The Journal of Health Care Organization, Provision, and Financing; by Andrea Wershof Schwartz, Shivani K. Jindal, Kimberly A. Wozneak, Robert E. Burke; 9/25The Age-Friendly Health Systems initiative (AFHS) was developed to spread principles of high-quality care for older adults using the 4Ms Framework: What Matters, Medications, Mentation and Mobility. In 2020, the Veterans Health Affairs (VA) set a goal to become an AFHS, given nearly half of Veterans are over aged 65. In conclusion, this paper demonstrates that the first 5 years of Age-Friendly Health Systems initiative within the VA have resulted in significant spread of the 4Ms, reaching hundreds of teams and thousands of Veterans over a broad geographic area and multiple care settings. However, much work remains to continue to spread and study AFHS within the VA, an urgent priority given the aging Veteran population who deserve person-centered care focused on what matters to them. The early results of AFHS implementation in the VA offer a promising model for implementing Age-Friendly care within a large health care system.

Facebook and perinatal loss: Facebook groups use among parents from the U.S., France and ItalyOmega-Journal of Death and Dying; by Livia Sani, Meryem Labouihi, Joanne Cacciatore, Marie-Frédérique Bacqué; 9/25This study explores how ... [Facebook] groups are used after perinatal loss and evaluates their psychological role for bereaved parents. We conducted a thematic analysis of posts from FB groups in the U.S. and France over one month; a third group from Italy was excluded due to insufficient activity. Four main categories emerged: emotional responses to loss, subsequently born children, mutual sharing of memories of their deceased children and practical information. Findings reveal similarities between the French and U.S. groups, particularly in how mothers express emotions, seek validation, and commemorate their children. The lack of active Italian groups may reflect cultural attitudes toward grief. 

Critical care physicians’ perspectives on nudging in communicationJAMA Network Open; by Derek R. Soled, Christy L. Cummings, Laura M. Berbert, David N. Williams, William B. Feldman, Robert D. Truog, Emily B. Rubin; 9/25Our qualitative study on the experiences and perspectives of nudges by critical care physicians identified multiple themes relating to the appropriate use and ethics of nudging patients in clinical decision-making. In the decision-making context, a nudge is defined as “any aspect of the choice architecture [the intentional arrangement and presentation of options to subtly guide people towards certain choices] that alters people’s behavior in a predictable way without forbidding any options or significantly changing their economic incentives.” While nudges preserve a person’s choice set without restricting options, they make it more likely that a person will choose some particular option by triggering decision-making heuristics and biases. Many physicians described nudging as an inevitable and natural part of communication—but one that must be used thoughtfully for it to be ethically justifiable. Assistant Editor's note: As a clinician, I can see where nudging may be appropriate at certain times, and when the clinician knows the values, concerns and goals of the patient/family. However, often the critical care clinician does not have that intimate knowledge of their preferences. In these situations, a better choice than nudging might be to request a palliative care consult, so that goal concordant decision making can be explored. 

The Family Caregiver Act—Safeguarding the human care chainJAMA Pediatrics; by Eli Y. Adashi, I. Glenn Cohen; 9/25On August 9, 2024, Jay Robert Pritzker, governor of Illinois, signed into law House Bill (HB) 2161 (Public Act 103-0797), likely the nation’s leading caregiving antidiscrimination legislation. The new law, which took effect January 1, 2025, prohibits employment discrimination against individuals saddled with family caregiving responsibilities. It is by dint of the enactment of HB 2161 that Illinois became the sixth state or district to legally require some form of this employee protection. Alaska, Delaware, Maine, Minnesota, New York, and Washington, DC, precede it, though some of these limit their protection to parents. Moreover, HB 2161 defines personal care as activities wherein a family member assumes responsibility for one or all of the basic needs of an ailing relative, replete with the provision of emotional support and/or transportation to medical appointments. A covered family member may include a child, stepchild, spouse, domestic partner, sibling, parent, mother-in-law, father-in-law, grandchild, grandparent, or a stepparent.Assistant Editor's note: "The Human Care Chain"--what a wonderfully descriptive title this is to describe the Illinois law. Those words evoke strong images of connectedness, humanness, caring, compassion, dedication, goodness, and love. As end-of-life and serious illness care providers, we understand the tremendous value, comfort and necessity of The Human Care Chain.

Hospice Research Information 10/11/25

Surgeon perspectives on palliative care: Are we the barrier to better care?The Journal of Clinical Ethics; Sean J Donohue, Baddr A Shakhsheer, Peter Phung, Anthony W Kim, Monica Zell, Sean C Wightman; Fall 25Surgeons face numerous perioperative challenges when caring for patients with life-threatening or chronic diseases. Palliative care has been associated with an average reduction of $3,237 per admission, as well as reduction in emergency department visits, hospital admissions, and hospital length of stay. For patients within the intensive care setting, palliative interventions have shown a 26 percent relative risk reduction in intensive care unit length of stay and overall alignment of patients' and families' goals of care. It remains pervasive in surgical culture that operative intervention and palliation are mutually exclusive and occur sequentially, rather than concurrently. Preoperative palliative care consultations in surgical patients occur less than 1 percent of the time. Preoperative palliative care may serve to help explore, clarify, and document quality-of-life values and preferences, in hopes of better promoting goal-concordant care.

State decision-making approaches in seriously ill people with intellectual/developmental disabilityJournal of Pain and Symptom Management; by Matthew Castillo, Arlen G. Gaines, Caitlyn M. Moore, Cynthia X. Pan; 8/25Hospice and palliative care (HAPC) clinicians supporting individuals with intellectual and developmental disabilities (IDD) navigate complex decision-making pathways while promoting autonomy and dignity. Approximately 1–3% of the global population lives with IDD, and many healthcare professionals feel ill-prepared to meet their unique needs, particularly in serious illness planning. This manuscript presents the case of Mr. A, an adult with Down syndrome, to illustrate practical ACP [advance care planning] and supported decision-making considerations across Maryland, New York, and Pennsylvania. Each state’s legal requirements for appointing a healthcare agent (HCA), determining capacity, and avoiding guardianship are discussed. Through thoughtful ACP and supported decision-making, HAPC clinicians can promote appropriate autonomy for individuals with IDD, fostering inclusive serious illness discussions and ethical practices across diverse legal landscapes.

Not everything is delirium at the end of life: A case reportAnnals of Palliative Medicine; by Daniel Gilbey, Eduardo Bruera, Patricia S Bramati; 9/25In this report, we highlight the challenges faced by clinical teams diagnosing and managing delirium, in particular when a language barrier is present. Case description: A patient in his late sixties with low English proficiency with a metastatic neuroendocrine tumor was transferred to a palliative care unit on non-invasive bilevel ventilation. He appeared to become delirious and agitated, trying to remove the face mask, wriggling in bed, and tapping the bedrails. Haloperidol and lorazepam were required when non pharmacological interventions failed to calm him down. The following morning, the patient was able to explain that the positive-pressure facemask was suffocating him and that he could not breathe. So, he was transitioned to high-flow oxygen via nasal cannula, and within a few hours, his respiratory distress significantly improved, and he regained his previous self.

[UK] From living well to dying well with dementia: The significance of an expanded understanding of loss for end-of-life carePalliative Care and Social Practice; by Joseph M Sawyer, Paul Higgs; 9/25As rates of dementia increase, the need for care is clear. Understanding what this looks like and how people might orientate the narratives and practices of care against a universally relatable version of success is less clear cut yet seems crucial if we are to progress towards an ideal of care that allows for a 'good' or 'dignified' death with palliative care. With this as a central focus, the paper examines the orientating principles that govern the current approach to dementia care. We map the evolution in academic theory from deficit-based models of care that identify impairments as a means to building resources to counter them, towards capacity-oriented approaches that focus on accommodating the new experiences that dementia brings. Where conventionally dementia has been viewed through the reductionist lens of being either a biological or social challenge to which there should be a matching solution, it is perhaps more useful to look at it from the inside out, to learn the lessons that dementia and its associated vulnerabilities may hold for humanity.