Literature Review

Hospice Research Information 11/13/25

What matters about what matters mostJAMA Network Open; by Mary E. Tinetti, Brenda S. Nettles; 10/25The authors note that “Identifying what matters is essential for providing person-centered care, guiding clinical visits, tailoring care plans, and providing a starting point to foster further patient engagement.” These are lofty expectations of a single, simple question ["what matters most?"]. While the what matters question alone cannot guide care planning or tailor interventions, it can serve as a starting point for ongoing conversations about patient health goals and care preferences. These priorities, in turn, can guide patient-centered decision-making and care. The question also provides an opportunity to get to know the patients we care for as individuals. That, in itself, is an invaluable gift reminiscent of a period when clinicians had more time with patients and cared for them over years.

Effectiveness of a telephonic Aging Brain Care Model for Medicaid Home and Community Services for dementia patients and their caregiversJournal of the American Geriatrics Society; by Malaz A Boustani, Steven R Counsell, Anthony Perkins, Abdelfattah Alhader, Kathryn I Frank, Diana P Summanwar, Karen L Fortuna; 10/25The primary purpose of the present study was the implementation and evaluation of the ABC Community program, a community-based and telephonically administered version of the Aging Brain Care model delivered by Area Agencies on Aging (AAAs) staff. This study employed a ... design with ... the main outcome measure being the total score of the Health Aging Brain Care (HABC) Monitor at 3- and 6-month follow-up. The HABC Monitor has demonstrated excellent reliability and validity in monitoring and measuring the burden of dementia symptoms and the quality of life and stress of the informal caregivers. Approximately 46% of informal caregivers who had at least mild burden at baseline had no such burden at 6 months, and 92% of those who had no stress at baseline remained burden-free at 6 months. Conclusion: The ABC community program might be a scalable collaborative dementia care model targeting socially vulnerable people living with dementia.

State-level variability in location of death of patients with end-stage liver diseaseDigestive Diseases & Sciences; by Julia Meguro, Michael Huber, David Goldberg; 10/25 Although deaths from end-stage liver disease (ESLD) and hepatocellular carcinoma (HCC) in the United States increasingly occur at home or in hospice, inpatient medical facility deaths remain high. Despite the decrease in in-hospital deaths for all causes, non-White decedents are more likely than White decedents to die in a hospital setting. This study aimed to determine state-level variability in the location of death among patients with ESLD and HCC and to assess racial/ethnic differences in these patterns, focusing on Black, White, and Hispanic/Latino patients. Findings from this study identify states where policies and programs that reduce inpatient deaths for ESLD patients may be most needed. Targeted interventions to improve access to high-quality EOL care for all patients address the national variability of hospice use, especially for those who are Black or African American and in states with high numbers of inpatient deaths and low rates of hospice use, should also be identified and implemented.

Developing medical cannabis competencies-A consensus statementJAMA Network Open; by Yuval Zolotov, Leslie Mendoza Temple, Richard Isralowitz, David A. Gorelick, Rebecca Abraham, Donald I. Abrams, Kyle Barich, Kevin F. Boehnke, Stephen Dahmer, Joseph Friedman, Patricia Frye, Aviad Haramati, Jade Isaac, Mary Lynn Mathre, Marion E. McNabb, Melinda Ring, Ethan B. Russo, Deepika E. Slawek, Brigham R. Temple, Genester S. Wilson-King, Julia H. Arnsten, Mikhail Kogan; 10/25An initial list of 9 competencies was refined and consolidated into 6 core competencies [for the use of medical cannabis]: (1) understand the basics of the endocannabinoid system; (2) describe the main components of the cannabis plant and their biological effects; (3) review the legal and regulatory landscape of cannabis in the US; (4) describe the evidence base for health conditions that are commonly managed with cannabis; (5) understand the potential risks of medical cannabis use; and (6) understand basic clinical management with medical cannabis. Each competency is supported by 2 to 7 subcompetencies, resulting in 26 subcompetencies reflecting granular topics, such as patient safety, vulnerable populations, structural inequities, and interdisciplinary care. These consensus-derived competencies provide a structured, evidence-informed foundation to guide the integration of medical cannabis into undergraduate medical education.

When hospice referrals are placed to improve acute care hospital mortality metricsJournal of Pain & Symptom Management; by Gina M Piscitello, Emily Martin, Gregg A Robbins-Welty, Ryan Baldeo, Joseph Shega, Michael T Huber; 10/25Risk-adjusted inpatient mortality is one way in which the quality of US acute care hospitals is assessed. While the specification of inpatient mortality measurements can vary, patients transitioned to general inpatient hospice (GIP) status are often excluded. GIP is one of four levels of hospice care intended for short-term inpatient management of uncontrolled symptoms that cannot be effectively managed in another setting. This care may be provided in acute care hospitals through partnerships with hospice agencies. As such, a patient may potentially be discharged from the hospital and enrolled in GIP in the same hospital location, even the same bed, and excluded from the hospital’s inpatient mortality measures.

Clinician and parent perspectives on essential psychosocial care in pediatric cancerJAMA Pediatrics; by Kimberly S. Canter, Anne E. Kazak, Natalie Koskela-Staples, Michele A. Scialla, Kimberly Buff, Emily Pariseau, Victoria A. Sardi-Brown, Julia B. Tager, Lori Wiener; 10/25The Standards for Psychosocial Care for Children With Cancer and Their Families provide guidelines for evidence-based psychosocial care for children with cancer and their families. The Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study extends the standards through innovative collaborative research between clinicians and patient and family advocates, with the goal of widespread clinical implementation of standards that clinicians and parents or caregivers agree to be priorities. The 3 standards prioritized by parents and clinicians in this study offer insight into shared priorities for psychosocial care in pediatric cancer. However, misalignment on other priority standards (parental mental health, palliative care, and neurocognitive monitoring) highlights the differences in perception between parents and clinicians. Areas lacking agreement are a stark reminder of potential challenges when working to meet the holistic needs of children with chronic diseases and their families, as clinicians and parents may not agree on which needs are most important.

Compassionate care, measurable impact: Evaluation of embedded physician-led palliative care in a community oncology practiceJCO Oncology Practice; by Haibei Liu, Jillian Hellmann, Jessica Heintz, Geoffrey Daniel Moorer, Karen Miller; 10/25This analysis indicates that embedding palliative care physicians within a community oncology practice significantly increases hospice enrollment and LOS [length of stay] greater than 3 days. These findings support a cooperative care model as a practical strategy for integrating palliative care physicians into community-based oncology practices to improve patients’ EOL outcomes. 

Affirming healthcare experiences among older Black-and White-identifying gay men living with serious illness: A qualitative study in the Deep SouthAmerican Journal of Hospice & Palliative Care; by Korijna Valenti, Michael Barnett, Stacy Smallwood, Ronit Elk; 10/25Older gay men living with serious illness often face challenges related to identity, disclosure, and relational recognition in healthcare settings [and] these challenges are particularly acute in the Deep South, where affirming care remains inconsistent, and disparities persist. Three main themes were identified [in this study]: (1) Experiences of Inclusion and Visibility, (2) Positive Communication, and (3) Sharing Sexuality and Effect on Care. Clear communication, honesty, and opportunities to ask questions were critical in navigating medical decisions. Discussions of sexual orientation were context-dependent and often shaped by perceptions of safety. Recognition of chosen family members, particularly partners, was central to participants' sense of dignity and affirmation in care.

Live discharges of patients in hospice home settings-Relief or grief: A narrative studyThe American Journal of Hospice & Palliative Care; by Jacek T Soroka, Amanda L Paulson-Blom, Alla Blotsky, Jennifer L Derrick, Margaret T Mudroch; 10/25Approximately 20% of hospice patients in the US are discharged alive, often due to Medicare regulations. One of the caregivers described discharge as distressing and poorly coordinated; the other reported a positive experience shaped by prior knowledge and financial resources. Both emphasized the importance of clear communication, care planning (eg, to avoid loss of durable medical equipment), and interdisciplinary support. Live hospice discharge can cause emotional and practical disruption, especially when not accompanied by a care transition plan or access to durable medical equipment. This study highlights the need for team-based communication, sensitivity in language, and continued support. Assistant Editor's note: There can be immense ambivalence among patients and loved ones when one is discharged alive from hospice. Usually, these patients have been with hospice for many months or even years. Perhaps the discharge is viewed as good news-even GREAT news(!) that the patient has "graduated" from hospice. Maybe loved ones will throw a graduation party(!) as it means that the patient is no longer terminally ill (as defined by hospice regulations). On the other hand, some patients/loved ones can become very distraught, wondering how they will get along without having a nurse to call in the middle of the night, without their beloved aide who brightens their day with the TLC of the bath-hair-nail care, and without the support and guidance of their social worker and/or chaplain. Some patients/loved ones will feel angry and abandoned. Best practices dictate that hospices be proactive in discharge planning when the health of their long length-of-stay patients hits a plateau; discharge should never come as a surprise. There should be frequent and ongoing discussions with the patient/loved ones about the potential for live discharge. Discharge planning needs to include: how the patient will get their DME/medical supplies/medications?, who does the loved one call in the middle of the night if there is a medical crisis?, who can provide tangible support and spiritual guidance (if desired)?, and can palliative care ease the transition once hospice has discharged?

Hospice Research Information 10/25/25

Religious traditions and grief in the USA: When it's less about G-d and more about the peopleJournal of Religion & Health; by Emily Scheinfeld, Cassidy Taladay-Carter, Kelly Tenzek; 9/25Many turn to religion or spirituality for personal meaning, purpose, and guidance throughout our lifetime, including in the context of death and dying. Through the qualitative analysis of 159 open-ended survey responses from adults in the USA who had experienced the death of a parent, we examined the types of religious traditions, practices, and/or rituals that participants engaged in during their bereavement. We then explored how those practices were helpful, harmful to, or revealing of emergent interfaith family dynamics throughout their grief journeys. By better articulating the communicative role of religion in death and dying, we broaden the understanding of religion and grief in these important sociocultural contexts. We discuss implications for families and religious communities alike.

End-of-life care in the austere military environmentMilitary Medicine; by Jason David, Stevan Fairburn, Hayden Fogle, Nicholas Dulin, Russell Day; 9/25Throughout the Global War on Terror (GWOT), the U.S. military built a revolutionary capacity to deliver life-saving care-even in austere environments-through rapid evacuation, far-forward providers and resources, and advances in prehospital and trauma-critical care. However, the operational reality of future Large Scale Combat Operations (LSCO), as evidenced by wars in Ukraine, Sudan, and Gaza, will be marked by high casualty rates and limited medical resources. [This review] ... explores how medical providers must shift from curative to comfort-focused care, often without formal palliative training, and how end-of-life care protocols must be integrated into doctrine, triage systems, and commander education. We offer pragmatic guidance on clinical decision-making, communication strategies with both medical and non-medical leaders, and the delivery of pain relief, emotional support, and dignity at the end of life-even in forward-deployed, under-resourced settings.