Literature Review

Study raises questions about GUIDE model’s helpfulness for caregivers of loved ones with dementia McKnights Home Care; by Adam Healy; 4/1/25 The Guiding an Improve Dementia Experience may need to be fine-tuned to better serve caregivers of those living with dementia, according to a new study published in Alzheimer’s & Dementia. The researchers identified 565 older adults and 555 caregivers eligible for GUIDE using data from the 2022 National Health and Aging Trends Study and National Study of Caregiving. They found that approximately half of GUIDE-eligible people with dementia received care from two or more caregivers, and about a third of these caregivers reported experiencing high caregiving strain. [Continue reading ...] 

White House cuts $12B in health funds: 5 updates Becker's Hospital Review; by Madeline Ashley and Kristin Kuchno; 3/26/25 HHS has abruptly canceled more than $12 billion in grants to state health departments that supported efforts to track infectious diseases, expand mental health services and modernize outdated systems, according to The New York Times. Late March 25, state health departments started receiving notices that $11.4 billion in grants from the CDC and roughly $1 billion in funds from the Substance Abuse and Mental Health Services Administration were being canceled immediately. “No additional activities can be conducted, and no additional costs may be incurred, as it relates to these funds,” the notices said, according to the Times. [Continue reading ...]

Avoidable mortality rises in US, bucking global decline Becker's Clinical Leadership; by Mackenzie Bean; 3/26/25 Avoidable mortality has increased in the U.S. for more than a decade, contrasting decreases seen in many other high-income countries, according to a study published March 24 in JAMA Internal Medicine. For the study, researchers at the Brown University School of Public Health analyzed mortality data from the CDC and World Health Organization for people 74 and younger between 2009 and 2021, spanning all 50 states and 40 high-income countries. Avoidable mortality includes deaths that could have been prevented through effective public health measures or timely, high-quality healthcare. [Continue reading ...]

Revamped tool can reliably assess pain symptoms in dementia patients: researchers McKnights Long-Term Care News; by Zee Johnson; 3/17/25 ... A team of researchers reconstructed the End-of-Life Dementia-Comfort Assessment in Dying, or EOLD-CAD, after a multifacility study showed that caregivers could adequately and reliably address a host of pain symptoms seen in end-of-life dementia patients. ... When clinicians working in the SNFs that were part of the trials used the EOLD-CAD, they were able to detect patterns in more than 600 residents that fell into four categories: physical distress, symptoms of dying, emotional distress, and well-being. Common symptoms observed across these categories were restlessness, shortness of breath, choking, gurgling, difficulty in swallowing, fear and anxiety. ...

Less wealth at death linked to more end-of-life symptoms McKnights Long-Term Care News; by Kristen Fischer; 3/10/25 Older people with less wealth showed a higher burden of symptoms when they approached the end of their lives compared with those who had more wealth, a study found. The report was published in JAMA Network Open on March 6. Investigators looked at data from 8,976 older adults. The team evaluated 12 end-of-life symptoms including difficulty breathing, frequent vomiting, low appetite, difficulty controlling arms and legs, depression, and severe fatigue or exhaustion.Then they correlated symptoms to individuals’ wealth. Wealth was broken into three categories: low wealth was having less than $6,000; medium wealth was having between $6,000 and $120,000; and high wealth was considered having more than $120,000 at the time of death. Of respondents, 22.5% had low wealth, 50.5% had medium wealth and 27.1% had higher wealth. People who had less wealth were more likely to have a higher burden of symptoms compared to those who had more money. Functional impairment, multimorbidity and dementia were factors that affected the association, data revealed.Editor's note: Click here for this important JAMA article, posted in our Saturday Research issue 3/15/25, "Wealth disparities in end-of-life symptom burden among older adults."

Research brief: Medicare Advantage Special Needs Plans linked to use of inferior hospice carePenn LDI - Leonard Davis Institute of Health Economics; 3/11/25 Beneficiaries of Medicare Advantage special needs plans are significantly more likely to use lower-quality hospices than beneficiaries of other Medicare plans. These disparities may result from the geographic availability of high-quality hospices or the referrals that beneficiaries receive from their plans’ contracted hospitals and nursing homes. The results support incentivizing referrals to high-quality hospices and improving consumer information about hospice quality.

Hallucinogens may elevate death risk by more than twofold Medscape; by Liz Scherer; 3/5/25 Hallucinogens are associated with a 2.6-fold increased risk for premature death in some individuals seeking emergency care, according to a recent study. The risks are especially substantial in vulnerable patients who are suicidal, who are susceptible to severe mental illness, or have comorbid conditions such as respiratory disease or cancer. The findings come at a time of renewed interest in the therapeutic potential of substances like psilocybin, lysergic acid diethylamide, methylenedioxymethamphetamine (MDMA), and ketamine for mood and substance use disorders. In 2023, the Canadian Institutes of Health Research allocated roughly $3 million to three clinical trials examining psilocybin-assisted psychotherapy in the treatment of alcohol use disorder, treatment-resistant depression, and end-of-life psychological distress in patients with advanced cancer.

Medical student brings music to end-of-life care CBS News Mornings; by Elizabeth Cook, Analisa Novak; 3/4/25 Melanie Ambler, a Stanford medical student, uses music to comfort patients in palliative care, composing songs based on their life stories. Her work, which blends medicine and the arts, has caught the attention of leading researchers and changed her own perspective on life and death. ... [After asking the perons meaningful, relevant questions about their life, Melanie composes personalized music on the spot, in the moment. Like,]  "transport me to your favorite place on earth," or "what are you famous for within your friends or your family," and when I get that response I then can accentuate some of the drama or the emotions or the personality and energy that the patient and the family share with me. You enter these patients' lives at the end of their life. 

Exploring the role of AI in palliative care and decision-making Penn Today; by Erica Moser; 2/28/25 Oonjee Oh [nursing Ph.D studen] was the lead author on the paper “The ethical dimensions of utilizing Artificial Intelligence in palliative care,” which published in the journal Nursing Ethics in November. ... The paper applies the moral principles of beneficence, nonmaleficence, autonomy, justice, and explicability to examine the ethical dimensions of three hypothetical use cases: machine learning algorithms that predict patient mortality, natural language processing models that capture the signals of psychological distress from clinical notes, and chatbots that provide informational and emotional support to caregivers.

‘Global problem’: Numerous factors, biases contribute to overtreatment at end of life Healio; by Josh Friedman; 2/26/25 Nathan I. Cherny, MD, has worked all around the world. At every stop — from Australia to Israel, and Memorial Sloan Kettering Cancer Center in between — he has seen people with cancer receive overly aggressive treatment at the end of life. ... In a review published in ESMO Open, Cherny and a cohort of multinational colleagues highlighted numerous reasons why overtreatment occurs among patients approaching the end of life, ... They listed more than 20 contributing factors, including desire for control of the cancer, denial and anger, family pressure and hope preservation. The two factors that contribute most to overtreatment are optimism bias and the “counterphobic determination to treat,” which involves clinicians having a difficult time introducing the suggestion of palliative care revert to offering further treatments, Cherny said. ... Responsibility for decisions does not need to fall solely on oncologists, Cherny added. Palliative care physicians, social workers, chaplains and others can be part of a team to assist patients with their choices. ... The number of patients who are overtreated differs at each institution. “Each institution has its own culture of care,” Cherny said. Editor's note: This article puts forth significant insights for all palliative and hospice clinicians, interdisciplinary teams, and palliative/hospice executive leaders. Apply Cherny's to your referral sources: "Each institution has its own culture of care." Apply these findings to your own palliative and hospice services. 

Interdisciplinary strategies for establishing a trusting relation as a pre-requisite for existential conversations in palliative care: a grounded theory study BMC Palliative Care - Part of Springer Nature, Open Acces; by Annica Lagerin, Christina Melin-Johansson, Bodil Holmberg, Tove Godskesen, Elin Hjorth, Lena Junehag, Carina Lundh Hagelin, Anneli Ozanne, Johan Sundelöf & Camilla Udo; 2/19/25... This study aimed to gain an in-depth understanding of healthcare professionals’ (HCPs) experiences of existential conversations with patients with PC needs and their next-of-kin by generating a theoretical model. ... To emphasize the importance of ethical competence for quality patient care, particularly in PC, a combination of care ethics, clinical proficiency, relational skills and effective communication is essential. ... The potential obstacles we identified that require attention include the need for managers ... to support HCPs by allowing time for reflection, developing new routines, and providing education focused on existential conversations in PC. However, the main contribution of this study is the description of the interdisciplinary strategies HCPs used to establish meaningful, existential conversations by maintaining presence, as this paved the way for trusting conversations with patients and next-of-kin. Editor's note: Pair this with today's article "Why being trustworthy is a leadership hack that drives success."

Keeping cool when debate turns hot: Inaugural global Ethics Center conference features scholarship, presentations on fostering civil, productive dialogue The Harvard Gazette; by Christy DeSmith; 2/24/25 Americans today are wrestling with how to turn down the heat when discussing politically and morally charged topics. Students, professors, and education professionals from around the globe assembled at Harvard this month to chart their way to more productive discussions — and better relations. The inaugural Challenging Barriers to Civil Discourse conference, hosted by the Edmond and Lily Safra Center for Ethics, featured scholarship on fostering open, honest exchanges across deep divides. ... [Dr. Julia] Kolak told of mediating clashes that arose ... when the family of a critically ill patient ... resisted end-of-life care. She works to unearth the principles guiding all parties, without elevating those with medical expertise. “When we treat others as capable of dialogue,” she offered, “it really changes the affective grip of conflict. ... [Jeffrey Dunn] raised the critical question: “What is the long-term goal of this work?” ...

The case for a 4-day workweek for nurse managers Becker's Clinical Leadership; by Kelly Gooch: 2/18/25 Four-day workweeks lead to an improved work-life balance for nurse managers, nurse leaders at Philadelphia-based Fox Chase Cancer Center argue in a new paper shared with Becker's. "A 4-Day Workweek for Nurse Leaders: Unveiling the Lessons Learned" is based on a study conducted at the 100-bed specialty cancer center. The study aims to evaluate the influence of a four-day workweek on nurse leaders' perceptions of workload and job satisfaction. Results of the study were published Feb. 17, and included 24 care delivery units and 43 nursing directors, managers and assistant nurse managers.