Literature Review

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.

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: 

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.

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.

C-suites invest in nurse-led clinical research Becker's Clinical Leadership; by Mariah Taylor; 9/29/25 Nationwide, health systems are increasingly turning to nurse scientists to close evidence gaps, answer pressing clinical questions and translate bedside observations into measurable patient outcomes. ... “Nurses ask the best questions; they are closest to patients and see gaps in care firsthand,” Linda Chlan, PhD, RN, associate dean for nursing research at Rochester, Minn.-based Mayo Clinic, told Becker’s. “But to move from ‘I think this works better’ to real evidence, you need data, and that comes from rigorous scientific inquiry.” This is where nurse scientists fill the gap between curiosity and evidence-based changes in protocols and practices. Nurse scientists help bedside staff build their studies, mentor them through the process, and help them turn data into evidence-based practice and demonstrate return on investment.

Outpatient pediatric palliative care: A national survey of clinic structures and operationsJournal of Pain and Symptom Management; by Ashley Kiefer Autrey, Caroline Stafford, Casie James, Suraj Sarvode Mothi, Elissa G. Miller, Alexis Morvant, Erica C. Kaye; 8/25Despite the rapid growth of pediatric palliative care (PPC) over the past two decades, outpatient pediatric palliative care (OPPC) remains an underdeveloped resource for children living with serious illness and their families. Characterizing the utilization of clinic models and workflow processes among OPPC programs is essential for establishing benchmarks to help improve OPPC operationalization and hospital-specific program development. This paper presents national data to address this gap, with the goal of supporting PPC programs in their efforts to expand service lines to meet the growing needs of patients with serious illness and medical complexity and their families.

The effect of the Care Ecosystem Collaborative Care Model on end-of-life outcomes for people with dementia and their caregiversAmerican Journal of Hospice & Palliative Care; by Lauren J Hunt, Krista L Harrison, Rachel Kiekhofer, Jennifer Merrilees, Alissa B Sideman, Sarah Dulaney, I Elaine Allen, Kirby Lee, Winston Chiong, Sarah M Hooper, Stephen J Bonasera, Tamara L Braley, Bruce L Miller, Katherine L Possin; 8/25Collaborative care models that feature care navigation have been found to have a range of benefit for people with dementia (PWD) and their caregivers, but their effect on end-of-life (EOL) outcomes has not been robustly evaluated. Our primary objective was to evaluate the effect of the Care Ecosystem-a telephone-based collaborative care model for dementia with care navigation-on EOL outcomes for PWD and their caregivers. Compared to Usual Care, Care Ecosystem caregivers had higher ratings of caregiver self-efficacy prior to PWD death ... but caregiver's satisfaction with EOL care did not differ between groups ... Qualitative analysis revealed Care Ecosystem provided helpful emotional and practical support, but participants wanted more anticipatory guidance, more information about hospice care and earlier referral, and better coordination with the healthcare team.

Initiation of pregabalin vs gabapentin and development of heart failureJAMA Network Open; by Elizabeth E. Park, Laura L. Daniel, Alyson L. Dickson, Meghan Corriere, Puran Nepal, Kathi Hall, W. Dale Plummer, William D. Dupont, Katherine T. Murray, C. Michael Stein, Wayne A. Ray, Cecilia P. Chung; 8/25Both pregabalin and gabapentin are common nonopioid medications used to treat chronic pain, which affects up to 30% of patients. Because pregabalin has greater potency than gabapentin in binding to the α2δ subunit of the L-type calcium channel, pregabalin may be associated with an increased risk for heart failure (HF). The findings suggest that pregabalin should be prescribed with caution in older patients with noncancer chronic pain.

Differences in after-death communications: A comparative analysis of unexpected vs. expected deaths and their impact on survivors' grief and perception of deathOmega; by Tess H McCormick, Gwen Grams, Fatma A Wise, Madeline Burns, Ashna Charania, Noelle St Germain-Sehr, Chris Roe, Callum E Cooper, David Lorimer, Evelyn Elsaesser, Jennifer Kim Penberthy; 9/25This study explores changes in grief and fear of death in individuals who reported after death communications (ADC) from people who died unexpectedly or whose death was expected. We found that those bereaved by unexpected loss reported significantly higher levels of uncertainty regarding changes in their fear of death compared to those bereaved by an expected loss. However, no significant differences were found in grief between the two groups. Most participants reported a positive impact of ADC on their bereavement, regardless of the type of loss they experienced.

Rehab and death: Improving end-of-life care for Medicare skilled nursing facility beneficiariesJournal of the American Geriatrics Society; by Sarguni Singh, Christian Davis Furman, Lynn A. Flint, Joan Teno; 8/25Hospitalized older adults with serious illness may be discharged to a skilled nursing facility (SNF) [and] ... for those that do not improve, discharge to a SNF can begin a cycle of costly care transitions between hospital, home with home health care, SNFs, and long-term care facilities, leading to fragmented care and missed opportunities for discussions about preferences for care, illness understanding, and to address distressing symptoms. In this article, we describe key policies that contribute to high-cost, low-value care near the end of life for older adults using the Medicare SNF benefit.