Literature Review

Palliative care at the cutting edge: Recent updates in surgical palliative careJournal of Pain and Symptom Management; by Antoinette R Esce, T J Douglas, Elizabeth Gorman, Sophia Tam, Christopher D Woodrell, Ana Berlin; 9/25Surgical patients with serious illness often experience unique clinical trajectories, systems of care, and relationships with providers. In order to meet the needs of this patient population and their care teams, hospice and palliative medicine professionals should be familiar with evolving best practices in surgical palliative care. We present the case of a geriatric trauma patient with a new diagnosis of advanced cancer cared for in a surgical intensive care unit. This example highlights important new developments in defining and supporting the geriatric trauma population, improving and expanding surgical palliative care education, and identifying which seriously ill surgical patients benefit most from palliative care interventions.

Examining public-facing hospice medical aid in dying participation policies in legalizing U.S. jurisdictionsJournal of Palliative Medicine; by Todd D. Becker, Paul Duberstein, Elizabeth A. Luth, Sanjana Kumar, Samuel Nemeth, Kira Phillips, Veda Kota, Elissa Kozlov; 9/25 Nearly 9 in 10 patients in the United States who use medical aid in dying (MAID) are enrolled in hospice. Only 39 of 724 hospices (5.4%) published a public-facing MAID participation policy. Policy availability was low even within the two jurisdictions mandating hospice online publication (0 of 52 from New Mexico [0.0%]; 14 of 389 from California [3.6%]). Moreover, even when published, policy content was highly variable and often too vague to discern which MAID-related activities were permitted. For instance, 18 of 39 policies (46.2%) did not report whether or not physicians were permitted to prescribe MAID medication. The lack of availability and specificity in hospices’ public-facing MAID participation policies may jeopardize patient access to legal end-of-life care options. 

[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.

Bridging gaps in palliative care for undocumented immigrants using the social determinants of health frameworkAmerican Journal of Hospice and Palliative Medicine; by Lisa Cross, Rachael Salguero; 9/25Systemic policies and inequities, rather than immigration status itself, create barriers to health. In the United States, an estimated 11 million individuals live without legal authorization, a population that faces profound challenges in accessing equitable care. These barriers pose particular difficulties for palliative care nurses in recognizing and addressing the needs of undocumented immigrants. Identifying nursing interventions in this manner aligns with the overarching goals of the American Nurses Association and reflects the principles of ethical compassionate palliative nursing.

Evaluation of a flexible artist-facilitated storytelling intervention on a palliative care unitJournal of Pain and Symptom Management; by Kyle J. Drouillard, Regine Krechowicz, Kim Kilpatrick, Shirley H. Bush, Cory J. Ingram, Kaitlyn Boese, Jaya Rastogi, Jessica Roy, Carol Wiebe, Jenny McMaster, Claudia Hampel, Sarina Isenberg; 9/25A professional storyteller facilitated sessions with patients, caregivers, and healthcare professionals on a palliative care unit, starting with an open-ended question (e.g., “What story do you want to tell?”). From 18 sessions, patients (n=6), caregivers (n=8), and healthcare professionals (n=6), found the storytelling session acceptable, appropriate, feasible, meaningful and worthwhile. The storyteller perceived participants as enthusiastic and appreciative. Patient and caregiver stories described the palliative care unit as a calm site of reflection, and framed illness as a journey. Healthcare professionals’ stories reflected pride in and gratitude for their work.

Decoding code status: Assessing end of life care knowledge in high-risk ED populationsThe Journal of Emergency Medicine; by Shreyans Sanghvi, Jacqueline Furbacher, Thaddeus Puzio, Caroline Ha, Deena Abdelhalim, Mariah Arneson, Alaina Sturkie, Erika Richey, Benjamin Cooper, Samuel Luber; 9/25The National Institute on Aging projects that the U.S. population over age 65 will nearly double by 2050, placing further strain on an already burdened healthcare system. The emergency department (ED) plays a critical role in caring for this vulnerable population, initiating intensive care for approximately 2,000 older adults daily. However, such care often conflicts with the treatment preferences of most Americans; 80% of older adults report a desire to avoid intensive care and repeated hospitalizations at the end of life (EOL). Among 187 patients [surveyed], 84% reported never having heard of code status options (of those who had, 73% were primarily English-speaking) and 83% were unaware of their current code status. Additionally, 74% lacked any ACDs [advance care directives]. Regarding CPR, 80% believed it successfully restarts the heart of sick patients more than 50% of the time, while 83% and 84% had never been informed about what CPR entails or its associated risks, respectively. 

Children’s experiences of parental deaths due to suicide, homicide, overdose, alcohol, or drug useJAMA Network Open; by Sean Esteban McCabe, Eric Hulsey, Luisa Kcomt, Rebecca J. Evans-Polce, Glenn Radford, Samuel D. Tennant, Vita V. McCabe; 9/25Childhood bereavement resulting from parental mortality in the US has increased substantially over the past decade, including a surge in parental deaths from stigmatized causes, which are defined as drug overdose, homicide, suicide, and alcohol-induced or other drug-induced deaths. This cohort study found that the number of children bereaved from stigmatized parental deaths has increased and now account for 2 in every 5 parental deaths in Michigan. The increase in children who experienced stigmatized parental deaths is concerning given the increased risks of mental health disorders, child welfare involvement, and criminal justice involvement for children immediately following a parental death. Children and families who are bereaved from a stigmatized death may experience a more complex bereavement process and require a higher level of care.

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

Telepalliation creates a sense of security: A qualitative study of patients with cancer receiving palliative carePalliative Medicine; by Jarl Voss Andersen Sigaard, Elisabet Dortea Ragnvaldsdóttir Joensen, Una Rósa Birgisdóttir, Helle Spindler, Birthe Dinesen; 10/7/25 ... The aim of this study was to explore patients' experiences with the functionality of the Telepalliation program while receiving specialized palliative care. ... Results: Four key themes emerged: "Sense of coherence," "Telepal platform," "Roles of spouse/partner and relatives," and "Cross-sector collaboration." The program improved patients' sense of security and coherence by enhancing communication with healthcare professionals. ... The platform also successfully integrated relatives into the care process. Editor's Note: While this research was conducted in Denmark, it surely resonates with patient care in the US. Reference articles in the uncertainties of government shutdowns, legislative needs to extend telehealth, and more: 

Adult Protective Services work with clients at the end of life: Challenges and support needsJournal of Elder Abuse and Neglect; by Wei-Lin Xue, Joy Swanson Ernst, Pi Ju Liu; 9/25Adult Protective Services (APS) professionals frequently interact with clients who are seriously ill or dying as they investigate cases of elder abuse and self-neglect. This study explored the unique challenges and support needs of APS workers in these end-of-life contexts. Thematic analysis identified two overarching domains: (1) challenges – including family conflict, limited caregiver preparedness, client self-determination, challenges to service access, and emotional strain on professionals; and (2) support needed – such as improved interagency collaboration, peer and organizational support. Participants emphasized the emotional toll of witnessing client decline and death, and highlighted gaps in training, coordination, and workplace support. Findings highlight the need for targeted policy and practice reforms to better equip APS professionals addressing elder abuse and self-neglect at the end of life.

Medicaid coverage policy variations for chronic pain and opioid use disorder treatmentJAMA Network Open; by Meredith C. B. Adams, Seth M. Eller, Cara McDonnell, Sarjona Sritharan, Rishika Chikoti, Amaar Alwani, Elaine L. Hill, Robert W. Hurley, ; 8/25Co-occurring chronic pain and opioid use disorder (OUD) are associated with a high disease burden for the patient, requiring comprehensive treatment approaches, yet Medicaid benefit structures for evidence-based therapies vary substantially across states. Our systematic economic evaluation reveals both promising developments and persistent challenges in Medicaid coverage for treatment of co-occurring OUD and chronic pain. Universal coverage of fundamental medications and basic interventional procedures provides a foundation for care, but varying implementation approaches create a complex landscape requiring further investigation.