Literature Review

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.

[Italy] The implantable cardioverter-defibrillators at the end of life: A double-edged sword of a life-saving technologyTrends in Cardiovascular Medicine; by Giacomo Mugnai, Davide Genovese, Luca Tomasi, Alessia Gambaro, Flavio Ribichini; 9/25Implantable cardioverter-defibrillators (ICDs) are critical for preventing sudden cardiac death, but their function poses a significant challenge in palliative care, where goals shift from life prolongation to comfort. A substantial percentage of patients receive painful, futile shocks in their final days, causing significant distress. This review synthesizes evidence on the impact of these shocks and underscores the gap between clinical practice and patient-centered care. Key barriers to timely ICD deactivation include clinician discomfort, patient misconceptions, and systemic flaws like fragmented care and absent institutional protocols. This review argues for a paradigm shift towards proactive, interdisciplinary care, calling for structured communication, routine advance care planning, and the integration of palliative cardiology models to ensure this life-saving technology does not compromise a dignified death.

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.

Emergency Department care coordination program for assisted living residents with dementia-A qualitative studyJAMA Network Open; Grace F. Wittenberg, Peter T. Serina, Nichole E. Stetten, Ann Reddy, Ellen McCreedy; 8/25Care transitions to the emergency department (ED) from assisted living centers (ALCs) for residents may include incomplete or inaccurate information during transfer. These transitions can be especially difficult for vulnerable populations, including persons living with dementia (PLWD). In this qualitative study of a care coordination intervention, CCMs [complex care managers] advocated for their patients remotely by filling information gaps, particularly for PLWD and patients in hospice, and perceived that the intervention was associated with improved patient care. CCMs also identified key areas for improvement, such as to increase ED staff awareness of the program and to expand program hours.

Emergency physicians and hospice & palliative medicine: A growing trend in fellowship trainingJournal of Pain and Symptom Management; by Alexander Zirulnik, Caroline Meehan, Daniel Markwalter, Jennifer Gabbard, Alyssa Tilly, Paul Zimmerman, Jensy Stafford, Justin Brooten; 9/25Emergency Medicine (EM) has played a foundational role in Hospice and Palliative Medicine (HPM) since the subspecialty's formal recognition. EM is one of the fastest-growing sources of applicants to HPM fellowships, reflecting rising recognition of palliative care's value in acute care. This trend has important implications for workforce planning, specialty integration, and the future of dual-trained EM-HPM clinicians.

Communication surrounding treatment preferences for older adults with dementia during emergency medical services responseJournal of the American Geriatrics Society; by Lauren R. Pollack, Danae G. Dotolo, Anna L. Condella, Whitney A. Kiker, Jamie T. Nomitch, Elizabeth Dzeng, Nicholas J. Johnson, Thomas D. Rea, May J. Reed, Michael R. Sayre, Erin K. Kross; 9/25Emergency Medical Services (EMS) providers, capable of rapidly delivering life-prolonging interventions, are often first to respond to acute health concerns for older adults in the United States. Prior work has shown a preference among many people with dementia for comfort-focused care near end-of-life. EMS providers treating critically ill older adults with dementia face challenges that may hinder their ability to elicit treatment preferences, in particular when responding to calls from professional caregivers. Direct communication with surrogate decision-makers may facilitate goal-concordant care.Assistant Editor's note: Being an RN for over 40 years, I have seen many changes in health care, especially in what is expected now of patients/families. I remember the day when nurses were not permitted to share with the patient his/her own BP reading; instead, we were to tell patients to "ask the doctor". Back then the doctor controlled almost all aspects of the patient's care, as well as the sharing of information with the patient about his/her own medical condition. I am glad those days are gone. Now, patients are expected to engage in ongoing discussions regarding advance care planning, execute written advance directives, and are expected to share their care preferences with health providers and loved ones and/or caregivers. It would be an ideal world where health care providers were continuously aware of evolving patient preferences and could always deliver goal concordant care. I believe we need to keep working toward this goal, but I also understand that this expectation can add burden to patients who are already extremely burdened with the many difficult aspects of serious illness. I believe that, as health care providers, we need to appreciate that some people simply cannot or will not share their preferences; it is simply too scary, too foreign, too difficult to do so.