Literature Review

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.

[South Korea] Factors influencing burnout among hospice and palliative care ward nursesJournal of Hospice & Palliative Nursing; by Young-Mi Kim, Chieun Song, Jeoungmin Park; 11/25This study aimed to identify the factors influencing burnout among nurses in hospice and palliative care units. This descriptive correlational study investigated the effects of nursing practice environment, resilience, and nurses' character on burnout among hospice and palliative care ward nurses. The participants were 217 nurses working in hospice wards of 20 institutions selected from the 88 inpatient hospice and palliative care institutions designated by the Ministry of Health and Welfare in South Korea, as of 2021. The results showed that a better nursing practice environment and higher resilience were positively associated with lower burnout. Among hospice and palliative care nurses, being in their 30s and having fewer than 5 years of total clinical experience were associated with higher burnout.

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.

Evaluating the impact of the End-of-Life Nursing Consortium Curricula: A systematic review of assessments and outcomesJournal of Hospice & Palliative Nursing; by Olga Ehrlich, Theresa Jizba, Mariela Hristova, Christine S Davidson, Dennis C Powless, Toni L Glover; 12/25The End-of-Life Nursing Education Consortium (ELNEC) curricula prepare nurses to provide high-quality, evidence-based palliative care to patients with serious illness and their families. The original ELNEC program has been adapted to include nursing subspecialties and online learning modules, reaching nurses and students worldwide. This systematic literature review described the outcomes of nursing knowledge, attitudes, practice changes, and patient outcomes in studies that used ELNEC as a primary intervention. The findings revealed significant enhancements in knowledge of palliative care among nursing students and nurses, as well as a notable positive shift in attitudes toward caring for seriously ill and dying patients. However, findings also indicate a need for studies that apply rigorous methods using valid and reliable assessment instruments aligned with nursing competencies.

[UK] 'It’s like a weight lifted off your shoulders’: A qualitative study of adult carers taking a breakJournal of Family Issues; by Richard Meade, Debbie Cavers, Neneh Rowa-DewarView; 11/25Unpaid carers play a vital role in supporting individuals with life-limiting conditions, yet without adequate support, they risk poor health and burnout. Ten in-depth interviews were conducted with carers who had used temporary institutional respite services in Scotland. Six key themes emerged: ‘Caring is all-consuming’; ‘Caring changes sense of self’; ‘Relief, recovery, repair’; ‘Breaks give carers their lives back (briefly)’; ‘A break doesn’t solve everything’; and ‘Trust in the respite centre is crucial’. Findings indicate that institutional respite care provides overwhelmingly positive experiences for most carers, offering them essential relief and recovery from the demanding nature of caregiving. However, the benefits were often short-lived, with carers expressing a need for longer and more frequent breaks.

Connecting communities across the globe: Atlas protocol Palliative Care and Social Practice; by Rebecca Newell, Juan Esteban Correa-Morales, Vilma A Tripodoro, Steven Vanderstichelen, Ghauri Aggarwal, Samar Aoun, Erin Das, Farah Demachkieh, James Downar, Silvia Librada, Julieanne Hilbers, Julie Lapenskie, Emmanuel Luyirika, Saif Mohammed, Masanori Mori, Ekkapop Sittiwantana, Libby Sallnow; 12/4/25 ... Eighteen global experts contributed to developing and validating the survey, with 14 of 15 items meeting the Content Validity Index threshold.  ... This protocol addresses a critical gap in Public Health Palliative Care literature by providing an inclusive and participatory method to map the compassionate community's landscape. The resulting data will promote visibility, partnerships and future research, supporting greater recognition of global compassionate communities and their contributions to primary palliative care.

Hospitalization experiences among nursing home residents with dementiaJournal of the American Medical Directors Association; by Jordan M Alpert, Jeffrey D Kovach, Nicholas J Casacchia, David Harris, Ardeshir Hashmi, Luke Dogyun Kim, Silvia Perez-Protto, Matthew A Pappas, Michael B Rothberg; 12/5/25Hospital admissions among nursing home residents with Alzheimer's disease and related dementias (ADRD) are burdensome, expensive, and provide limited clinical benefit. ... Conclusions and implications: Patients undergoing hospital admission suffered distressing experiences, but most patients did not have do-not-resuscitate orders, and referrals to hospice and palliative care were rare. Patients and their family members should be informed about the hospital experience before admission and offered appropriate care services.