Literature Review

Families demand end to Medicare waiting period for early-onset Alzheimer’s patients Washington Examiner; by Elaine Mallon; 6/15/25 Jason Raubach was diagnosed at 50 years old with early-onset Alzheimer’s disease — a diagnosis that affects nearly 200,000 Americans. He received the diagnosis in 2018, completely upending life for his family. His youngest child was just a freshman in high school. ... Shortly before receiving an official diagnosis, Jason Raubach lost his job, having to move his family onto a consolidated omnibus budget reconciliation act health plan, or COBRA plan, which allows a person to keep their health insurance even after losing their job. “It wasn’t cheap,” Elizabeth Raubach said.However, once diagnosed, Jason Raubach had to wait two and a half years before he could receive coverage under Medicare, health insurance for those 65 years and older or those with qualifying disabilities. But Elizabeth Raubach, along with dozens of other caretakers for people diagnosed with Alzheimer’s, called on Congress in a letter to eliminate the 29-month waiting period required for those under the age of 65 to receive coverage under Medicare. ...

The only thing wrong with trying to please everyone is that there's always at least one person who will remain unhappy. You.  ~Elizabeth Parker

Mindfulness and relaxation interventions reduce depression, negative affect and stress in widow(er)sJournal of Loss and Trauma; Lindsey M. Knowles, Deanna M. Kaplan, Melissa Flores, Sydney E. Friedman, Mary-Frances O’Connor; 6/25Mindfulness training (MT) and progressive muscle relaxation (PMR) interventions show promise for improving bereavement-related grief (Knowles et al. 2021). Mindfulness training (MT) develops the systematic and secular practice of focusing one’s attention on present moment experiences, emotions, and thoughts, from an open, nonreactive, and nonjudgmental perspective (Bishop et al., 2004). Progressive muscle relaxation (PMR) facilitates physiological and psychological relaxation via a systematic release of generated bodily tension (Bernstein et al., 2000). MT and PMRhave been shown to reduce depression relapse, and improve depression, perceived stress, mindfulness and/or quality of life in clinical and non-clinical populations ...

Strategies to prepare hospice providers to interact with adolescents with a parent in hospicePalliative & Supportive Care; William Grayson, Denice Kopchak Sheehan, Pamela S Stephenson, Kristen DeBois, Caitlin Sheehan; 5/25The sample included 18 young adults (18-28 years old) whose parents died in hospice or palliative care while they were adolescents (12-18 years old). Semi-structured interviews were conducted virtually via Microsoft Teams. The participants described a variety of skills that are important for hospice providers to know. They provided specific suggestions for hospice providers who seek to help adolescents navigate this critical time when their parents are dying or have recently died. These results can also be used to inform the development of interventions that assist hospice providers with strategies tailored to an adolescent's specific needs.

Can a chatbot be a medical surrogate? The use of large language models in medical ethics decision-makingNEJM-AI; Isha Harshe, B.S., B.A.; Kenneth W. Goodman, Ph.D.; Gauri Agarwal, M.D.; 6/25 The use of AI in health care has raised numerous ethical challenges. Issues concerning data privacy, accountability, bias perpetuation, and the identification of appropriate uses and users have prompted scholars and scientists to tackle these challenges. Our findings indicate that while AI systems may assist in identifying considerations and guidelines for ethical decision-making, they do not consistently demonstrate the flexibility of thought that humans exhibit when addressing novel ethical cases. AI can support ethical decision-making, but it is not currently capable of showing autonomous ethical reasoning for consultation regarding patient care.

Sacred moment experiences among internal medicine physiciansJAMA Network Open; Jessica Ameling, MPH; Nathan Houchens, MD; M. Todd Greene, PhD, MPH; David Ratz, MS; Martha Quinn, MPH; Latoya Kuhn, MPH; Sanjay Saint, MD, MPH; 5/25Some have described sacred moments as sudden intimacies or moments of deep memorable connection with another person. The health care setting is replete with opportunities for the types of human connections that lead to sacred moments, such as times of crises or grief, or conversely, times of great happiness. These moments leave participants with a sense of joy, peace, and empathy for the others involved. In this survey study of 629 physicians, 68% reported experiencing a sacred moment with a patient, and physicians who considered themselves very spiritual or possessing a strong sense of purpose in life or work had increased odds of experiencing a sacred moment. Both experiencing sacred moments often and discussing them with colleagues were associated with less burnout [and] improve[d] physician well-being.

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.

Saturday newsletters focus on headlines and research - enjoy!

Snowline rethinks donation policy Mountain Democrat, Placerville, CA; News Release; 6/18/25 ... Operated in support of Snowline’s nonprofit mission, its thrift stores raise crucial funds to provide palliative care, hospice services, bereavement and veteran support to individuals and families throughout our region. Recently, in response to feedback from the community about donation limitations, Snowline opened its doors to accept a broader range of donated items. The goal was simple: to be more accommodating and say “yes” more often to those wanting to give. ... While the outpouring of donations was generous and deeply appreciated, this well-intentioned shift led to a significant rise in items that simply could be resold, things that were broken, torn, incomplete or nonfunctional. As a result, waste removal costs have skyrocketed in the thousands due to an increased number of trash runs and landfill fees. These unexpected expenses threaten Snowline’s ability to direct maximum funds toward the care programs that are at the heart of its mission. “We want to be a resource for our community and also remain good stewards of the donations we receive,” said Director of Thrift Operations Daron Hairabedian. “But we also have a responsibility to ensure the dollars raised through our thrift operations go where they matter most, supporting patients and families in the most vulnerable times of their lives.” To preserve the long-term sustainability of Snowline’s vital programs, including palliative care and grief support services, Snowline Thrift Stores will return to a more selective donation process. 

How long was Adriana Smith on life support? Brain‑dead nurse's baby delivered by C‑section Enstarz; by David Unyime Nkanta; 6/18/25 The 31-year-old nurse was declared brain dead early in her pregnancy—her baby was born via C-section nearly four months later, sparking legal and ethical debate. Adriana Smith, a 31‑year‑old nurse in Atlanta, was declared brain dead in mid‑February after suffering serious blood clots in her brain. Despite devastating diagnosis, she remained on life support for nearly four months—a decision doctors said was legally necessary under Georgia's strict abortion laws. This rare case of maternal somatic support—keeping a brain-dead woman alive to deliver a baby—is highly unusual. On 13 June, doctors at Emory University Hospital performed an emergency c‑section, delivering a boy they named Chance, weighing just 1 lb 13 oz (around 830 g). ... Smith's mother, April Newkirk, described the ordeal as 'torture,' saying: 'I see my daughter breathing, but she's not there.' The family maintain that they were never allowed to make treatment decisions, a situation that has deeply distressed them and prompted calls for change. 

[England] Developing a palliative care service for the homeless community Nursing Times; by Mark Pedder; 6/18/25 To help address inequalities in the provision of palliative care, a hospice set up a service focusing on the unique care needs of Luton’s homeless community. The outreach initiative addresses the logistical and emotional barriers that often prevent homeless individuals from seeking care. Initially conceptualised as a weekly outreach clinic, the service evolved into a more flexible model that adapts to the unpredictable nature of the community it serves. By reframing the conversation and addressing the stigma surrounding homelessness, the service aims to improve health outcomes and extend life expectancies for this vulnerable population, while avoiding unnecessary hospital attendances and improving end-of-life conversations.

From burnout to belonging: Creating space for grief in clinical education American Academy of Pediatrics (AAP) Journals Blog; by Rachita Gupta; 6/16/25 ... While significant progress has been made in addressing burnout and emotional distress in medicine, and in incorporating these topics into medical education, many clinicians remain hesitant and uncertain about how to address grief and distress from patient care in day-to-day clinical practice. This uncertainty exists both in terms of their own experiences and, even more so, in supporting trainees. A lack of emotional processing in these difficult situations can accelerate burnout and further disconnect clinicians from the humanism and vulnerability that are intrinsic to the privilege of practicing medicine. ... The recently published Hospital Pediatrics article by Bloomhardt et al, “Good Grief? Introducing the TEARS Framework for Educator to Support Learners Experiencing Grief,” (10.1542/hpeds.2024-008096) addresses the hesitancy many clinicians experience when assessing learners’ emotional processing during or after distressing patient cases by introducing the TEARS framework. ...Editor's Note: See a related post in today's newsletter, "“Her toes fell off into my hand”: 50 moments that changed healthcare workers forever."