Literature Review

The Alliance champions community-based solutions at Senate palliative care briefing National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 6/4/25 The National Alliance for Care at Home (the Alliance) played a lead role in [Wednesday's] Senate Comprehensive Care Caucus briefing, which focused on expanding access to palliative care services for patients with serious illness. The bipartisan event, hosted by Senators Jacky Rosen (D-NV), John Barrasso (R-WY), Tammy Baldwin (D-WI), and Deb Fischer (R-NE), underscored the need for innovative models that deliver person-centered care in the home and community. Hillary Loeffler, Vice President of Policy & Regulatory Affairs for the Alliance, moderated the panel discussion, guiding thoughtful conversation on access, workforce, and innovation in care delivery. 

Research study participation, 6/7/25

Sunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!

NPHI proud to announce its partnership on the upcoming documentary for PBS, Caregiving, from Executive Producer Bradley Cooper National Partnership for Healthcare and Hospice Innovation (NPHI), Washington, DC; 5/19/25 The National Partnership for Healthcare and Hospice Innovation (NPHI) is proud to announce its partnership on the upcoming PBS documentary Caregiving, a powerful new film executive produced by Academy Award-nominated actor, director, and producer Bradley Cooper. Created in collaboration with Cooper’s production company, Lea Pictures, as well as WETA Washington, D.C., and Ark Media, Caregiving will shine a national spotlight on the often unseen yet essential work of caregivers across the country. NPHI is honored to serve as a national partner on this important project. Narrated by Uzo Aduba (The Residence, Orange Is the New Black) and directed by Chris Durrance, Caregiving intertwines deeply personal stories of caregivers with the untold history of the American care system. The documentary examines how caregivers—often family members, friends, and frontline professionals—navigate the immense challenges and unseen achievements of their roles.

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.

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.

[Canada] Health leaders’ perspectives and attitudes on medical assistance in dying and its legalization: A qualitative studyBMC Medical Ethics; Amanda Yee, Eryn Tong, Rinat Nissim, Camilla Zimmermann, Sara Allin, Jennifer L Gibson, Madeline Li, Gary Rodin, Gilla K Shapiro; 5/25This study highlights the wide-ranging and complex attitudes health leaders may hold towards MAiD [Medical Assistance in Dying] and identifies the convergence of multiple factors that may have contributed to the legalization of MAiD in Canada. Participants identified six factors that they believed to have led to the introduction of MAiD in Canada: public advocacy and influence; judicial system and notable MAiD legal cases; political ideology and landscape; policy diffusion; healthcare system emphasis on a patient-centred care approach; and changes in societal and cultural values. Participants expressed wide-ranging attitudes on the legalization of MAiD. Some described overall agreement with the introduction of MAiD, while still raising concerns regarding vulnerability. Others held neutral attitudes and indicated that their attitudes changed on a case-by-case basis. Participants described four factors that they considered to have had influence on their attitudes: personal illness experiences; professional experiences and identity; moral and religious beliefs; and, the valence of patient autonomy and quality of life.

Corby boy, 10, set for Arctic trek in tribute to fatherBBC News, by Kate Bradbrook & Brian Farmer; 2/2/24, published in our newsletter 2/2/24 and 12/24/24A 10-year-old boy once told he might never walk can look forward to days of "wonder" as he prepares to trek in the Arctic in memory of his late father. Caeden, who has cerebral palsy, was born 12 weeks early. But Caeden, of Corby, Northamptonshire, has climbed Ben Nevis and is now set to meet the Arctic challenge. Mountain guide John Cousins said the "biggest danger in such conditions comes from the cold". Caeden is due to travel to Sweden on Monday with mother Lisa, brother Ashton, 12, and sister Khya, 14.