Literature Review

Advance care planning among diverse U.S. older adults with varied cognition levelsAlzheimer's & Dementia; by Zahra Rahemi, Swann Arp Adams; 1/25Older adults from minority groups often experience elevated rates of chronic diseases and cognitive impairment, coupled with lower rates of engagement in advance care planning (ACP) and comfort care as they approach end of life... Our study revealed that individuals facing cognitive impairments exhibited lower rates of engagement in ACP. Notably, among the variables examined, race, ethnicity, rural residence, education, and age emerged as significant predictors of ACP in a national sample of older adults in the U.S. These findings underscore the importance of incorporating these sociodemographic factors into the design of interventional studies aimed at enhancing ACP and mitigating disparities.

The Alliance on CMS Hospice Special Focus Program Implementation: “Doubling down on a dangerous decision, eager to work with incoming administration to fix” National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 1/16/25 The National Alliance for Care at Home (the Alliance) issued the following statement in response to the news of hospice providers filing litigation against the Centers for Medicare & Medicaid Services (CMS) over their flawed implementation of the Hospice Special Focus Program (SFP). The Alliance and the broader hospice community, who have been engaged on this program since its inception, have repeatedly shared concerns directly with CMS staff at all levels. They warned that this approach would inflict unnecessary harm to patient care, cause confusion to families when selecting a hospice provider to care for their loved ones at the end of life, and will cause some providers to sustain irreparable damage. These concerns have been echoed by lawmakers, providers, and the leading national hospice trade organizations. “With CMS doubling down on a dangerous course of action by proceeding with the Hospice SFP in its current state—and offering no due process or administrative recourse to address or mitigate its flaws—some hospice providers will suffer irreparable harm and have no choice but to seek justice through the courts on behalf of their patients and mission,” said Dr. Steve Landers, CEO of the Alliance. [Click on the title's link to continue reading.]

Nonprofit opens home-based care facility for hospice patients Fox KNWA-24/KFTA, Lowell, AR; by Justin Trobaugh; 1/17/25 A nonprofit organization introduced a new resource Jan. 17 for those in Northwest Arkansas who need home-based care. Circle of Life provides hospice and in-and-out patient care services, and it opened its Joey Feek Center for Home-Based Care in Lowell. The facility will serve 93% of the non-profit’s patients and was donated by the Willard and Pat Walker Charitable Foundation. 

Transition to hospice: how it impacts the mental health of caregivers of persons with dementiaAlzheimer's & Dementia; by Oonjee Oh, Debra Parker Oliver, Karla Washington, George Demiris; 2024In this study, we aimed to examine caregivers’ mental health indicators and their correlation structure based on the timing of hospice transition... In the context of dementia care, our results highlight that caregivers who just entered hospice are undergoing a challenging transition that often finds them in a mentally vulnerable position. To develop and implement effective strategies for caregivers of persons with dementia, we need to understand the needs and vulnerabilities of caregivers during hospice transition and identify the best timing for the delivery of supportive tools.

‘Those who have made death their life’ Part 2: Family The Daily Yonder - Keep It Rural; by Hannah Clark; 1/16/25 Hannah Clark spent six months riding along with the nurses and certified nursing assistants (CNAs) of Hearth Hospice who provide in-home care to those living in Northwest Georgia and Southeast Tennessee. These hospice workers often drive up to a hundred miles a day to visit a handful of patients scattered across the Appalachian landscape in both rural towns and urban centers. What will follow this introductory essay is her photo reportage in three parts, documenting what she has witnessed accompanying these caregivers. The intimate portraits and vignettes show tender moments at different stages towards the end of one’s life. Their beauty lies in the companionship Clark captured in moments of need and vulnerability. Editor's note: Click here for the Introduction, that we posted 1/16/25, and click here for Part 2: Hospice, that we posted 1/17/25.

Transforming care: Spencer Health Solutions and Pharmerica partner to simplify medication management and improve lives The MarCom Journal, Morrisville, NC; by Leigh White, PharMerica and Daphne Earley, Spencer Health Solutions; 1/21/25In a move set to redefine how medication is managed, Spencer Health Solutions (SHS), a leader in innovative healthcare technology, and PharMerica, one of the nation’s largest and most trusted long-term care pharmacy services provider, are joining forces. This transformative partnership aims to make managing medications easier and more reliable for individuals with complex medication needs, senior living communities, and payers nationwide. ... Spencer Health Solutions (SHS) is dedicated to transforming medication management through innovative healthcare technology. ... PharMerica ... serves the long-term care, senior living, hospital, home infusion, hospice, behavioral, specialty and oncology pharmacy markets. 

Remember that other people may be totally wrong. But they don’t think so. Don’t condemn them. Any fool can do that. Try to understand them. Only wise, tolerant, exceptional people even try to do that. ~Dale Carnegie

Stories of bereavement: Examining medical students’ reflections on loss and griefOmega-Journal of Death and Dying; Johanna Shapiro, Nicholas Freeman, Alexis Nguyen, Nancy Dang, Yasaman Lorkalantari; 12/24Medical students in this study reported similar reactions to personal and professional loss, with some expected differences, such as students who experienced professional loss more often noting compassion for others and more frequently discussing managing the feelings of others, the importance of skill acquisition, processing personal emotions and team support. Students experiencing personal loss understandably appeared more focused on their own grief and more often commented about feelings of helplessness and numbness. Students in both groups reported little about how they coped with their grief or about receiving either informal or institutional support. The similarity of the essays, while due to many factors, may suggest internalizing pressures to conform to socially desirable narratives. Medical educators and clinical supervisors should help students develop effective coping skills in response to loss, provide better institutional support, and encourage students to tell authentic stories about their experiences of loss and grief. 

The 2024 election and potential battle for the social safety netJAMA Health Forum; Sara N. Bleich, PhD; Benjamin D. Sommers, MD, PhD; Rita Hamad, MD, PhD; 1/25Federal safety net programs play a major role in providing nutrition assistance, health insurance, income support, and much more to tens of millions of people with low incomes, including children, parents, and adults with disabilities or chronic conditions. Trump’s return to office for a second term with a Republican-controlled Senate and House leaves the future of the US social safety net unclear. Clinicians and public health professionals should elevate and advance strong evidence about the positive effects of the social safety net and the likely harms that would ensue if access or benefits are reduced.

Medical professionals’ perceptions of and experiences with terminally ill Orthodox Jewish patientsAmerican Journal of Hospice and Palliative Medicine; Moshe C. Ornstein, MD, MA; David Harris, MD; 1/25Orthodox Jewish patients with terminal illnesses have unique goals and desires, often driven by halakha (Jewish law and ethics) and cultural norms. Compared to the general population, Orthodox Jewish patients with terminal illnesses are more likely to request aggressive measures at end-of-life and are less likely to have completed advanced directives and health care power of attorney documentation. They also do not always have a rabbinic authority involved in decision-making. Health care professionals highlighted strong religious and community support as positive elements of caring for this population and recommend that medical teams establish early and direct communication with rabbinic authorities for those patients for whom a rabbi’s involvement is desired.

Disproportionate use of aid in dying among people with ALS: Why ALS aid-in-dying requests are common while ALS is rareJournal of Aid-in-Dying Medicine; Carolyn Rennels, MD; Steven Z. Pantilat, MD FAAHPM, MHM; Ambereen K. Mehta, MD, MPH, FAAHPM; Allison Kestenbaum, MA, MPA, BCC-PCHAC, ACPE; Kelsey Noble, DO; Jessica Besbris, MD; Ali Mendelson, MD; Kara Bischoff, MD; 12/24People with amyotrophic lateral sclerosis (ALS) disproportionately use aid in dying. We explore aspects of the ALS experience that may help explain the higher rates of aid-in-dying requests in this disease relative to others. In particular, the desire to maintain control is prominent in the face of a relentlessly progressive disease that results in substantial disability. We also describe how the requirement for self-administration of aid-in-dying medications impacts people with ALS.

Requests for medical assistance in dying by young Dutch people with psychiatric disordersJAMA Psychiatry; Lizanne J.S. Schweren, PhD; Sanne P.A. Rasing, PhD; Monique Kammeraat, BSc; Leah A. Middelkoop, MSc; Ruthie Werner, MSc; Saskia Y.M. Mérelle, PhD; Julian M. Garcia, MD; Daan H.M. Creemers, PhD; Sisco M.P. van Veen, MD, PhD; 1/25This cohort study found that the number of young psychiatric patients in the Netherlands who requested MAID-PS [medical assistance in dying based on psychiatric suffering] increased between 2012 and 2021 and that applications were retracted or rejected for most. Those who died by MAID or suicide were mostly female and had long treatment histories and prominent suicidality. These findings suggest that there is an urgent need for more knowledge about persistent death wishes and effective suicide prevention strategies for this high-risk group.

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