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.

Integrating psychotherapeutic concepts to enhance serious illness communication: Assessment of a model curriculumJournal of Palliative Medicine; Danielle Chammas, Keri Brenner, Amanda Moment, Sarah E. Byrne-Martelli, Leah B. Rosenberg, Daniel Shalev; 5/25 Serious illness communication training often focuses on sharing medical information, discussing goals of care, and supporting patients and caregivers. Few communication frameworks explicitly integrate psychosocial concepts to improve therapeutic efficacy. Using Kern’s six-step curriculum development model, we created an interactive workshop focused on psychological formulation and countertransference. Results: Satisfaction was high (92% satisfied or highly satisfied), and most participants reported meaningful impact on their clinical practice (89%), teaching (93%), and team collaboration (93%) at eight-week follow-up. Conclusions: A multisite, half-day workshop significantly enhanced palliative care clinicians’ knowledge and perceived application of core psychotherapeutic concepts.

Providing support to children during the loss of an important adult in the ICUIntensive Care Medicine; Ruth Kleinpell, Bénédicte Gaillard-Le Roux, Jozef Kesecioglu; 5/25Research on bereavement care in the ICU has demonstrated associated benefits, including facilitating emotional adjustments, meaning-making, and resilience. As Rowland and colleagues highlight, helping children process information effectively without feeling overwhelmed is important, as they need supportive adults to provide honest, developmentally appropriate explanations. The strategies highlighted in their narrative review can help ICU clinicians to tailor bereavement care for children to support them through the loss of an important adult in the ICU.

Sex and racial/ethnic differences in end-of-life care preferences in persons with Parkinson's Disease and related disordersMovement Disorders; Whitley W Aamodt, Lynn Eickholt, David G Coughlin, Lisa Solomon, Katharine A Rendle, Carly Marshall, Joaquin A Vizcarra, Nabila Dahodwala; 5/25In persons with Parkinson's disease (PD) and related disorders (PDRD), rates of end-of-life (EoL) hospitalization are greatest, and rates of hospice utilization lowest, among men and persons of color. In adjusted models, women with PDRD were more likely than men to prefer religious/spiritual support at the end of life. Compared with White participants with PDRD, non-White participants were more likely to consider EoL hospitalization, less likely to consider medical aid in dying, and less familiar with palliative care. In four focus groups involving 14 questionnaire respondents, contributors to EoL decision-making included medical knowledge/information, personal experiences, family dynamics, religion/spirituality, and resources/cost. Conclusions: EoL care preferences differ by sex and race/ethnicity in persons with PDRD. These preferences are influenced by multiple factors and may contribute to differential EoL outcomes, emphasizing the need for individualized, culturally competent EoL care. 

Trends in home health care among traditional Medicare beneficiaries with or without dementiaJAMA Network Open; Rachel M. Werner, MD, PhD; Seiyoun Kim, PhD; R. Tamara Konetzka, PhD; 5/25In the US, nearly 7 million people live with Alzheimer disease and other dementias, a number that is expected to increase as the population ages. Although many people with dementia live in nursing homes or other institutional settings, institutional use is decreasing, and a growing majority of people with dementia are opting to live at home and receive care in the community. Home-based care is typically consistent with most people’s preferences and may be particularly important for those with dementia, as institutional settings and transfers can be stressful and disorienting.

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.

Online dialectical behavioral therapy for emotion dysregulation in people with chronic pain-A randomized clinical trialJAMA Network Open; Nell Norman-Nott, BPsychSc; Nancy E. Briggs, PhD; Negin Hesam-Shariati, PhD; Chelsey R. Wilks, PhD; Jessica Schroeder, PhD; Ashish D. Diwan, MD, PhD; Jina Suh, PhD; Jill M. Newby, PhD; Toby Newton-John, PhD; Yann Quidé, PhD; James H. McAuley, PhD; Sylvia M. Gustin, PhD; 5/25Chronic pain, defined as pain persisting beyond 3 months,1 affects 20% to 30% of the population. Beyond its sensory experience, chronic pain is an intrinsically emotional experience associated with heightened negative emotions, including anger, worry, and low mood, alongside a diminished capacity to regulate emotions. Dysregulated emotions contribute to comorbid psychological disorders; symptoms of anxiety and depression, which are present in 50% to 80% of people with chronic pain; and worsening pain intensity. One emotion regulation–focused intervention being adapted for chronic pain is dialectical behavioral therapy (DBT). In DBT skills training, emotion regulation is improved by encouraging emotion recognition, emotion expression, and reaction evaluation. Results of small in-person trials of DBT for people with chronic pain show promise to improve emotion dysregulation, depression, anxiety, and pain intensity.

Naming the pain: Grief-ism, grief-ist, and the linguistics of lossIllness, Crisis & Loss; Laurel E. Hilliker, Bob Baugher; 5/25This article introduces two new terms, Grief-ism and Grief-ist, to expose some of the behaviors, actions, inactions, and unrealistic expectations of others (from individual support persons to societal institutions) towards bereaved individuals. In this article, we provide examples of subtle prejudice, discrimination, and marginalization involving those adjusting to significant loss. As well, this work draws attention to the medicalization and policing of the process of grief by well-meaning others. We believe these actions accumulate over time, weigh down those who are grieving loss, and tend to make the grief feel unsupported. As a result, people coping with the loss of a loved one may experience feelings of isolation and, in some cases, a lengthening of the grief process.

Where adults with heart failure die: Insights from the CDC-WONDER databaseCirculation: Heart Failure; Farman Ali, Shaaf Ahmad, Aman Ullah, Ali Salman, Adarsh Raja, Faizan Ahmed, Prinka Perswani, Ahsan Alam, Jishanth Mattumpuram, Muhammad Talha Maniya, Hamza Janjua, Tyler J Bonkowski, Aravinda Nanjundappa; 5/25This study underscores the shifting trends in the locations of death among patients with HF [heart failure], with a ≈2-fold increase in HF-related deaths occurring at home over the past 2 decades. Hospice/nursing home deaths increased from 30.95% ... in 1999 to 34.71% ... in 2017, but declined to 29.54% ... by 2023. Young adults (20-34 years) had the highest proportion of inpatient deaths. Sex, ethnicity, and urbanization were significant predictors of death location, with men, White individuals, and those in large metropolitan areas more likely to die in medical facilities.