Literature Review

Palliative care in liver transplantationCurrent Transplantation Reports; Michelle Ng, Elliot Tapper; 5/25 Palliative care is an underutilized resource due to the misconception that being a liver transplant candidate precludes patients from accessing these services. However, early integration of palliative care has become increasingly important for both pre- and post-liver transplant patients as it not only improves patient outcomes, but also promotes quality of life that extends beyond graft or patient survival. We discuss strategies to manage pain, ascites, hepatic encephalopathy, pruritis, muscle cramps, sexual dysfunction, depression, anxiety, insomnia, and malnutrition. These symptoms are best addressed with a multi-modal approach with non-pharmacologic therapies as an adjunct. 

Caring beyond cure-Perspectives of pediatric oncology nurses on end-of-life careJournal of Hospice & Palliative Nursing ; Scarperi, Peter BSN, RN; MacKenzie Greenle, Meredith PhD, RN, ANP-BC, CNE; June, 2025In a sample of nursing students and nurses working in pediatric oncology, this mixed-methods study aimed to describe attitudes toward and experiences of providing end-of-life care and examine the relationship between education, work experience, and attitudes. Overall, participants held positive attitudes toward end-of-life care, with staff nurses more positive than student nurses. All participants had provided end-of-life care, yet only 2 (5.41%) thought their education thus far prepared them. Age, education, experience, and burnout were associated with attitudes toward providing end-of-life care. Qualitative themes included challenges of preparedness and training, the nurse’s role, and parent team barriers. Training in pediatric end-of-life care is crucial to improve nurses’ comfort with providing this care.

Examining education models for clinical staff working with people with intellectual and developmental disabilities in hospice and palliative care: A narrative literature reviewAmerican Journal of Hospice and Palliative Care; Caitlyn M Moore; 5/25Despite individuals with intellectual and developmental disabilities (IDD) living longer with serious illness, healthcare professionals report inadequate training in this area. Additionally, IDD specialists consistently express discomfort and limited knowledge regarding HAPC [hospice and palliative care]. Findings indicate that while several studies demonstrate positive outcomes regarding knowledge, self-efficacy, and satisfaction among participants, there is a lack of standardized training and patient-centered metrics. Existing interventions largely focused on improving the knowledge of IDD staff regarding HAPC, with limited attention given to educating HAPC professionals on the nuances and complexities needs of people with IDD. This review underscores the importance of developing and implementing evidence-based and standardized training programs that encompass the needs of both HAPC and IDD specialists.

Cocota's story: Life lessons in aging, resilience, and end-of-life agency from a Brazilian matriarchJournal of the American Geriatrics Society; Thiago J Avelino-Silva, Niousha Moini; 6/25In Cocota's case, a hip fracture in her 80s did not lead to permanent disability; rather, she reclaimed her daily routines, demonstrating the interplay between physical robustness and unwavering determination. Equally telling was her decision to "stop eating and drinking" near life's end, exemplifying resilience as a final expression of agency. We further explore how her experiences align with deeper forms of well-being, marked by purpose and prosocial behavior, and practical wisdom, including emotional regulation and sound moral judgment. By examining her life journey, clinicians and community partners can better appreciate how resilience spans physical, cognitive, psychosocial, and spiritual domains, ultimately guiding more integrated strategies to support older adults. The lessons learned have direct relevance for clinical interventions, community programs, and public health initiatives aimed at fostering autonomy and meaningful engagement in later life.

Evaluation of reporting of race and ethnicity in hospice and palliative care researchJournal of Palliative Medicine; Kimberly S Johnson, Karen Bullock, Cardinale B Smith, Deborah B Ejem, Nadine J Barrett, A'mie Preston, Kenisha Bethea, Marisette Hasan, Ramona L Rhodes; 5/25The disproportionate impact of the COVID-19 pandemic on marginalized communities due to structural racism has led to an increased focus on diversity, equity, and inclusion in medical literature. Among the eligible articles reviewed, there were 48 unique racial and ethnic categories [and] the most common groups specified were White (N = 77), Black (N = 52), and Hispanic/Latino (N = 36). Over half of articles (n = 53, 60.2%) combined minoritized groups into a nonspecific category (e.g., "other"), and 30 (34.1%) articles specified White populations alone or White populations with a nonspecific category for other groups. Seventeen (19.3%) articles included over 90% White participants, and only 3 (3.4%) articles had a minority health or health disparity focus. In this review of high impact, practice changing articles, the lack of appropriate representation of minoritized racial and ethnic groups, frequent use of non-standard categories to describe race and ethnicity, and the small number of articles focused on health disparities raise concerns about the generalizability of research findings, equity in research processes, and attention to populations that experience disparities in palliative care outcomes.

The e-PainSupport digital application for assessing pain and pain management in home hospice: A randomized controlled trialWestern Journal of Nursing Research; by Masako Mayahara, JoEllen Wilbur, Louis Fogg, Mary Clare Houlihan, Debra Parker Oliver, Jacquelyn J Benson, Arlene M Miller; 6/25Poor patient pain management in home hospice is associated with low family caregiver adherence to analgesic regimens. Health care technology can improve caregiver access to education and communication to hospice nurses... The e-PainSupport intervention produced a small positive effect on reducing pain intensity (d = 0.27) and statistically significant increase in adherence (P = .003), compared with usual care... Caregiver use of the e-PainSupport app is feasible and may contribute to decreasing hospice patient pain.

[UK] Palliative sedation at the end of life: Practical and ethical considerationsClinical Medicine; Dr Caroline Barry MBBS FRCP LLM FHEA PG Cert; Dr Robert Brodrick MB ChB (Hons) MA MRCP FHEA; Dr Gurpreet Gupta MBBS BSc PG Cert; Dr Imranali Panjwani LLB, PGDip, PG Cert, PhD; 6/25Highlights: The aim of palliative sedation is to relieve refractory suffering with the use of medications to reduce consciousness. Where palliative sedation is being used to treat agitation at the end of life, it is important to exclude and/or address reversible causes prior to starting medication. The drug, dose and route of administration of palliative sedation may vary according to the indication for treatment. Appropriate and proportionate use of palliative sedation does not hasten death. Suffering may have different meanings for people depending on their backgrounds and life experiences.

A sampling of four apps for grieving usersJournal of Electronic Resources in Medical Libraries; Danielle Becker; 5/25 Users experiencing grief tend to find themselves on a lonely journey. Integrating multiple approaches to facilitate this journey can help users through the grieving process. Utilizing the unique features of Mobile Apps gives users a private and personal space to explore their feelings and gain insights into the grieving process. In some cases, they provide an opportunity to work one-on-one with therapists and find community with other users who are also working through their grief. Mobile apps can provide information and combat the loneliness common in grief experiences while also providing emotional support.

"Less words, more pictures": creating and sharing data visualizations from a remote health monitoring system with clinicians to improve cancer pain management Frontiers in Digital Health; by Virginia LeBaron, Natalie Crimp, Nutta Homdee, Kelly Reed, Victoria Petermann, William Ashe, Leslie Blackhall, Bryan Lewis; 4/23/25 Background: The Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C) is a remote health monitoring system (RHMS) developed by our interdisciplinary team that collects holistic physiological, behavioral, psychosocial, and contextual data related to pain from dyads of patients with cancer and their family caregivers via environmental and wearable (smartwatch) sensors. Conclusion: Clinicians desired higher-level (i.e., less granular/detailed) views of complex sensing data with a "take home" message that can be quickly processed. ... integrating these data into clinical workflows is critical to ensure these types of data can optimally inform the patient's plan of care. Future work should focus on customizing data visualization formats and viewing options, as well as explore ethical issues related to sharing data visualizations with key stakeholders.

Dementia severity associated with unmet caregiving needs during skilled home health careJournal of Applied Gerontology; Julia G. Burgdorf, Jennifer L. Wolff, Yolanda Barrón, Halima Amjad; 5/25One-third of home health care (HHC) patients have dementia. We examined 426,608 older (65+) HHC patients with dementia in 2018. Unmet caregiving needs were determined from HHC clinician reports indicating that (1) no caregiver was present (lack of availability) or (2) the caregiver needed training (lack of capacity). Most (83%) HHC patients with dementia experienced an unmet need for caregiving. Medicaid enrollment and depression were associated with lack of caregiver availability; greater clinical severity and being post-acute were associated with lack of caregiver capacity. Patients with high (compared to low) cognitive symptom severity had higher odds of unmet needs due to lack of caregiver capacity ... Findings illustrate the gap between dementia caregiving needs and capacity, highlighting the importance of supportive resources such as training.

Advancing Symptom Alleviation with Palliative Treatment (ADAPT): A qualitative study to understand how a nurse and social worker palliative telecare team improved quality of life in chronic illnessJournal of Applied Gerontology; Amy Ladebue, Juliana G. Barnard, Leah M. Haverhals, Brianne Morgan, Kelly Blanchard, Marilyn Sloan, David B. Bekelman; 5/25 The Advancing Symptom Alleviation with Palliative Treatment (ADAPT) trial found that a nurse and social worker palliative telecare team (providing care via phone) improved quality of life in older Veteran patients with chronic illness. Our objective was to describe clinician and patient experiences of ADAPT and how ADAPT influenced Veterans’ quality of life. We used thematic analysis on structured interviews with 36 randomly selected patients, semi-structured focus groups with nine palliative care intervention team clinicians, and clinical intervention summaries of 147 patients. ADAPT proved to be an effective model for most Veterans by improving Veterans’ health care delivery and navigation and promoting timely and holistic health care and teaching skills that improved wellbeing. ADAPT also helped to improve patient engagement and sense of agency.

Global adoption of value-based health care initiatives within health systems-A scoping reviewJAMA Health Forum; Ayooluwa O. Douglas, MD, MPH; Senthujan Senkaiahliyan, MHSc; Caroline A. Bulstra, DVM, MHSc, PhD; Carol Mita, MS; Che L. Reddy, MBChB, MPH; Rifat Atun, MBBS, MBA; 5/25The value-based health care (VBHC) framework was introduced in the US in 2006 to combat rising health care expenditures that failed to produce improvements in patient quality, safety, and outcomes over the past decades. The framework focuses on 6 elements: (1) organizing care around medical conditions, (2) measuring outcomes and costs for every patient, (3) aligning reimbursement with value through bundled payments, (4) integrating care systems regionally, (5) establishing national centers of excellence for complex care, and (6) using information technology systems to support these elements. This scoping review of 50 initiatives found that the implementation of VBHC globally is still in its early stages, with published scientific literature pointing to small-scale institutional-level implementation within individual departments and hospitals. Large-scale implementation designed to develop high-value health systems is limited.

American Geriatrics Society position statement: Making medical treatment decisions for unrepresented older adultsJournal of the American Geriatric Society; Joseph D Dixon, Aruna V Josyula, Noelle Marie Javier, Yael Zweig, Mriganka Singh, Luke Kim, Niranjan Thothala, Timothy W Farrell; 5/25This paper is an official position statement of the American Geriatrics Society (AGS) and updates the 2017 AGS position statement, Making Medical Treatment Decisions for Unbefriended Older Adults. In this updated position statement, the term "unbefriended" is replaced by "unrepresented" as a term that is more value-neutral, more accurately describes the circumstance in which a person without medical decision-making capacity does not have recognized surrogate representation, and better aligns with increasingly preferred terminology as reflected in recent medical literature. We define unrepresented older adults as those who (1) lack decisional capacity to provide informed consent for a particular medical treatment, (2) have not executed an advance directive that addresses the medical treatment at hand and lack capacity to do so, and (3) lack representation from a surrogate decision-maker (i.e., family, friend, or legally authorized surrogate).  The process of arriving at treatment decisions for this population should follow standards of procedural fairness and include capacity assessment, search for potential surrogates, team-based efforts to determine the patient's values and preferences, and steps to guard against bias. Proactive measures are needed to identify older adults at risk for becoming unrepresented. This position statement also calls for national efforts to reduce state-to-state variability in legal approaches for unrepresented patients.