Literature Review

When the nurse becomes the daughter: Lessons from my father's final daysAmerican Journal of Hospice & Palliative Care; by Keshia R Brown; 11/25Military service demands sacrifice, but no professional challenge prepared me for the deeply personal experience of caring for my father at the end of his life. This experience transformed my understanding of nursing by revealing the profound impact of presence, love, and dignity-centered care. Caring for my father illuminated the intersection of professional skill and personal devotion, demonstrating that the heart of nursing extends beyond clinical interventions. It resides in honoring the whole person and offering unwavering compassion in their most vulnerable moments. This narrative reflects on the emotional, ethical, and spiritual lessons learned as I walked my father through his final chapter-an unexpected gift and the greatest honor of my nursing career.

Staying connected: A longitudinal, multisite, interprofessional rural fellowship collaborationJournal of Pain & Symptom Management; by Rhianon R. Liu, Rebecca N. Hutchinson, Stephen H. Berns, Nastasha Stitham, Jackie Fournier, John W. Wax MD , Lisa A. Stephens, Jonathan S. Jolin, Maxwell T. Vergo; 11/25Four interprofessional Hospice and Palliative Medicine (HPM) fellowship programs in rural northern New England states created an in-person educational retreat series. The goal of the series was to maximize shared educational resources and foster community amongst faculty and fellows, in an upstream attempt to improve recruitment/retention of clinicians in three rural states with inadequate access to specialty palliative care. At least 88% of fellows rated the retreats effective in strengthening their clinical, communication, teamwork, and leadership skills. Over four-fifths of faculty and fellows felt the retreats increased their sense of belonging and decreased professional isolation. The retreats were a top factor influencing fellowship choice for 29% of fellows, as well as a major incentive to remain practicing in the region for 32% of faculty.

Self-efficacy change among diverse family caregivers in dementia care The Journals of Gerontology Series B; by Deborah M Oyeyemi, Erich J Greene, Yunshan Xu, David R Lee, Rafael Samper-Ternent, Maya L Lichtenstein, Alan Stevens, Jeff D Williamson, Arun S Karlamangla, Debra Saliba, David B Reuben; 11/25Objectives: to determine whether changes in caregiver self-efficacy (beliefs about one’s ability to manage dementia-related problems and access help) differed by caregiver race and ethnicity across all participants enrolled in a large pragmatic trial of comprehensive dementia care. Black, Latino, and White dementia caregivers reported similar improvements in caregiver self-efficacy after participating in a comprehensive dementia care trial. Caregiver self-efficacy change did not differ significantly by caregiver race and ethnicity. Personalized aspects of comprehensive dementia care appear to address the needs of diverse caregiver populations.

Palliative care specialist use among Medicare decedents who had poor-prognosis cancersJAMA Network; by Isaac S. Chua, Haiden A. Huskamp, Ateev Mehrotra, Andrew D. Wilcock; 7/25Has specialty palliative care (PC) use among Medicare decedents who had cancers with poor prognoses changed in the context of greater telehealth use and more advanced practice clinicians in the field? In this cohort study..., the proportion with specialty PC use increased 24% from 2018 to 2023 [from 30% to 37%], largely driven by outpatient encounters and care by advanced practice clinicians. Decedents who were older, had lower incomes, and were living in nonmetropolitan areas remained less likely to receive any PC... These findings suggest that different strategies are needed to increase PC use among some disadvantaged subpopulations.Publisher's Note: Similar to Hua's article (Validation of a claims-based algorithm for specialist palliative care delivery in metastatic cancer), palliative care specialists were defined as those with NPI provider specialty code 17 or those who  included an ICD-10 Z51.5 code on at least 80% of their evaluation and management encounters.

Validation of a claims-based algorithm for specialist palliative care delivery in metastatic cancerJournal of Pain and Symptom Management; by May Hua, Zhixin Yang, Ling Guo, J Brian Cassel, R Sean Morrison, Guohua Li; 11/25The lack of valid methods to identify specialist palliative care (PC) delivery in population-level data impedes comprehensive understanding of its use... We developed a claims-based algorithm to identify specialist PC, using a physician billing claim from a known PC clinician as the gold standard, retaining candidate variables with a positive predictive value (PPV) >60%... A simple algorithm can identify receipt of specialist PC care in Medicare claims for patients with metastatic cancer with reasonable accuracy.Publisher's Note: While this is a statistically sophisticated article, findings support use of the palliative care provider specialty code (Provider Specialty Code 17) and encounter for palliative care code (ICD-10 Z51.5) to identify specialist palliative care delivery in a specific population (Medicare beneficiaries with metastatic cancer claims).

Is moral adequacy possible in the face of structural disadvantage? The experiences of health and social care staff in supporting homeless people using substances at the end of life Palliative Care and Social Practice; by Gary Witham https, Gemma Anne Yarwood, Sarah Galvani, Lucy Webb, and Sam Wright; 11/26/25 Background: Homeless people using substances at the end-of-life face many challenges in accessing and receiving good care. These can relate to poor interdisciplinary working by health and social care practitioners, stigma and structural disadvantage. Results: The data analysis resulted in three key discourse positions relating to how practitioners position themselves in relation to the practice challenges of supporting homeless people using AODs and approaching end of life. These were as follows: (i) what constitutes a good death and where, (ii) the limitations of professional boundaries and (iii) maintaining moral adequacy in the face of traumatic death.

Palliative care interventions for caregivers of people with advanced dementia: A meta-analysis Sigma Global Nursing Excellence - Worldviews on Evidence-Based Nursing; by Ita Daryanti Saragih, Ira Suarilah, Hsun-Kuei Ko, Ice Septriani Saragih, Bih-O Lee; 12/11/25 Conclusion: Palliative care interventions were successful in reducing conflict in decision-making of caregivers of people with advanced dementia. ... Linking Evidence to Action: Future palliative care interventions for caregivers of advanced dementia patients should focus on developing the contents of palliative care materials based on evidence-based evaluations and explore strategies to improve engagement between patients, caregivers, and healthcare professionals.

Managing competing interests between appointed surrogates and extended family in end-of-life care available to purchaseAmerican Academy of Pediatrics; by Derek R. Soled, Elizabeth Lanphier, Ianthe R.M. Schepel, Maya Scott; 11/25This Ethics Rounds article brings together perspectives from a clinical ethicist, 2 resident physicians in pediatrics, and a social worker on a case involving a terminally ill, intubated, and sedated young adult patient whose health care proxy, extended family, and health care team disagree on the course of her care. Although the proxy, the patient’s adult sister, seems to agree in principle with the health care team’s recommendation to withdraw life-sustaining treatment, she is unwilling to consent to withdrawal due to perceived pressure from her extended family. From an ethics perspective, we discuss the concept of the “marginalized decision-maker” and how to blend the “best interests” approach from pediatric medicine with the “substituted judgment” standard applied in adult medicine when making decisions for incapacitated young adult patients. From a clinical perspective, we explore features of this case that may contribute to feelings of moral distress within the medical team, identify best practices for leading team and family meetings to avoid values imposition and promote shared decision-making, and argue for the importance of training physicians in clinical ethics and reflective skills to improve the quality of patient care and reduce experiences of moral distress in the workplace. Finally, we explore the role that family dynamics, families’ culture and values, and past experiences in the health care system can play in shared decision-making conversations.

Perceived value of transfusion access and hospice services among patients with blood cancersJAMA Network Open; by Hari S. Raman, Angel M. Cronin, Scott F. Huntington, Hajime Uno, Caitlin Brennan, Susan Lysaght Hurley, Anna Tidswell, Richard M. Kaufman, Sarah M. Lanahan,  Kimberly S. Johnson, James A. Tulsky, Gregory A. Abel, Oreofe O. Odejide; 11/25In this survey study, our analysis suggests that for many patients with advanced hematologic cancers, the ability to maintain access to blood transfusions is the primary factor in deciding whether to enroll in hospice. Given that the majority of hospices in the US do not provide transfusion access, patients with blood cancers are faced with the impossible choice of preserving access to palliative transfusions vs accessing quality home-based hospice care. This dichotomy between transfusion access and hospice care may contribute to the low rate of hospice use in this population. Our findings underscore the need to develop and test novel hospice delivery models that combine palliative transfusions with routine hospice services to effectively alleviate discomfort and optimize the QOL [quality of life] of patients with blood cancers near the EOL [end of life].Assistant Editor's note: In the calendar year 2024 data from Medicare Hospice claims indicate that only 3.0% of beneficiaries had a blood cancer diagnosis, per Hospice Analytics. This article suggests some great ideas about how hospice can address the expense of blood transfusions with CMS. But until that happens, hospices could consider approaching their local transfusion center about a contract for a reduced price for blood transfusions for patients in need. Ultimately, this will benefit the hospice, the transfusion center (potentially more patients), and most importantly, the patient.

[Canada] Rethinking palliative care through three institutional ethnographic stories of people living with homelessness and life-limiting illnessINQUIRY: The Journal of Health Care Organization, Provision, & Financing; by Courtney R. Petruik, Katrina Milaney; 11/25Fifteen to thirty percent of Canadians have access to palliative care, with even fewer access opportunities for people with experiences of homelessness. Part of a larger study, this paper examines how health and social systems shape the need for community-based palliative and end-of-life care, using 3 stories from clients of the Community Allied Mobile Palliative Partnership (CAMPP). Findings reveal systemic demands like renewing insurance for medical equipment, restrictive housing rules, and standardized hospital protocols that overwhelm capacities of many people with experiences of homelessness. Community-based palliative teams like CAMPP fill critical gaps in mainstream services by tailoring care to complex social realities.