Literature Review

Parental goals of care for children with rare diseases: A content analysis of pediatric advance care planning conversationsAmerican Journal of Hospice and Palliative Medicine; Tamiko Younge, MD, MSHS; Hailey Moore, MS; Jessica D. Thompkins, BSN, RN, CPN; Maureen E. Lyon, PhD; 7/25Caregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child’s disease. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases. We identified 13 goals of care themes: maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child, and partnering with our medical team. Conclusions:Parents of children with rare diseases have a multitude of holistic goals related to their child’s care. High-quality advance care planning conversations may help families articulate these goals.

Benefits of emergency department-initiated goals of care conversations and palliative care consultations among older adults with chronic or serious life-limiting illnessesJournal of the American College of Emergency Physicians Open; by Jennifer Johnson, Timmy Li, Megan Mandile, Santiago Lopez, Molly McCann-Pineo, Landon Witz, Payal Sud; 8/25Initiating goals of care (GOC) conversations and palliative care consultations in emergency departments (EDs), compared with inpatient settings, may be associated with improved outcomes among older adults with chronic or serious life-limiting illnesses. ED-initiated GOC conversations were associated with approximately 3-day shorter hospitalizations and a $2689 contribution margin increase, suggesting increased health care cost savings. ED-initiated palliative care consultations were associated with approximately 7-day shorter hospitalizations, 6 fewer excess days in acute care, 1 fewer intensive care day, and higher odds of hospice discharge. Starting these discussions earlier in the ED may help hospitals optimize resources while ensuring treatment aligns with patients’ palliative needs and care preferences.

Systemic strategies to prevent nonbeneficial treatments near the end of lifeJAMA Network Open; by Sofia Weiss Goitiandia, Amy Z. Sun, Amy Rosenwohl-Mack, Catthi Ly, Katherine E. Sleeman, Daniel Dohan, Elizabeth Dzeng; 7/25There exists a default toward high-intensity treatments near the end of life in the United States, including for people living with advanced dementia (PLWD). Clinical momentum, a cascade of increasingly intensive treatments facilitated by systemic factors, contributes to this default. The intensity of treatments provided to PLWD near the end of life is lower in Great Britain. Using Great Britain as a counterexample to the United States, this study examines factors that may contribute to lower-intensity treatment patterns.

[Finland] Moral psychological exploration of the asymmetry effect in AI-assisted euthanasia decisionsCognition; by Michael Laakasuo, Anton Kunnari, Kathryn Francis, Michaela Jirout Košová, Robin Kopecký, Paolo Buttazzoni, Mika Koverola, Jussi Palomäki, Marianna Drosinou, Ivar Hannikainen; 9/25A recurring discrepancy in attitudes toward decisions made by human versus artificial agents, termed the Human-Robot moral judgment asymmetry, has been documented in moral psychology of AI. Our studies documented reduced approval of an AI doctor's decision to withdraw life support relative to a human doctor. This effect persisted regardless of whether the AI assumed a recommender role or made the final medical decision, but, importantly, disappeared under two conditions: when doctors kept on rather than withdraw life support, and when they carried out active euthanasia (e.g., providing a lethal injection or removing a respirator on the patient's demand) rather than passive euthanasia. These findings highlight two contextual factors–the level of automation and the patient's autonomy–that influence the presence of the asymmetry effect, neither of which is not predicted by existing theories. Finally, we found that the asymmetry effect was partly explained by perceptions of AI incompetence and limited explainability. As the role of AI in medicine continues to expand, our findings help to outline the conditions under which stakeholders disfavor AI over human doctors in clinical settings.Publisher's note: I find this study simultaneously interesting and unsettling...

Burnett Center restores labyrinth as community healing space Southern Maryland News, LaPlata, MD; by Aamaly Hossain; 7/21/25 On a wide stretch of land, nestled between Barbara Burnett’s two homes and a weathered barn, stands the Burnett Center for Hope and Healing — and beyond it, is its labyrinth. Once known as Calvert Hospice, the center is now part of the Hospice of the Chesapeake and transformed from a patient-filled facility into a community space centered solely on healing. “We’ve reimagined it into a center for everyone in the community experiencing any kind of loss, grief, illness — whatever they need to heal,” Heather Conner, volunteer service manager with Hospice of the Chesapeake, said.

[Korea] Earlier palliative cancer care cuts end-of-life ED visits Medscape; ed. by Gargi Mukherjee; 7/23/25 A recent retrospective study found that earlier outpatient palliative care referrals for patients with advanced cancer were associated with a small increase in overall emergency department (ED) visits but significantly fewer end-of-life ED visits and improved advance care planning. ... A substantial proportion of patients with advanced cancer visited the ED, including during the final month of life. Earlier palliative care referrals were associated with fewer end-of-life ED visits, “emphasizing the importance of timely integration of [palliative care] to reduce unnecessary interventions and ensure goal-concordant care,” the authors wrote. The researchers also noted that the findings underscore the need for structured advance care planning discussions across care settings to enhance the quality of end-of-life care.

Prairie Doc Perspective: Navigating spiritual pain and grief Rawlins Times - Prairie Doc Perspective, Rawlins, WY; by Rev. Kari Sansgaard, Avera Hospice; 7/23/25 After nearly 20 years of parish ministry, I entered the world of health care, which, I learned, abounds in acronyms. My first clue was in chaplaincy training, known as CPE (Clinical Pastoral Education), the required education for most hospital and hospice chaplains. CNA, SoB (Shortness of Breath), PRN, HoH (Hard of Hearing), and a myriad of other acronyms are now part of my own vernacular. QoL (Quality of Life) is the big one in hospice, sometimes called “comfort care.” When quantity of life becomes diminished, it’s all about quality. ... In hospice, when death is impending, spiritual pain can lead us to ponder existential questions, such as the following:

CMS plans hiring spree ahead of new payment models Becker's Hospital Review; by Alan Condon; 7/22/25 The CMS Innovation Center plans to hire a string of new employees as it plans to roll out several new payment models. The move comes four months after HHS, CMS’ parent department, cut about 5% of the agency’s workforce, Politico reported July 21. Four things to know:

Make sure your worst enemy doesn't live between your two ears. ~ Laird Hamilton

Where UnitedHealthcare, Humana rule the Medicare Advantage market Modern Healthcare; by Tim Broderick; 7/22/25 Medicare Advantage competition was meager in 97% of counties last year, where beneficiaries could choose among just a handful of dominant insurers. The health policy research institution KFF analyzed Centers for Medicare and Medicaid Services data on the plans available across the U.S. and Puerto Rico in 2024. The findings indicate that Medicare enrollees have few options in most areas. Market share was “highly concentrated” in 79% of counties and “very highly concentrated” in another 18%, KFF found, using metrics similar to those the Federal Trade Commission and the Justice Department employ to measure competitiveness. ... Ninety-three percent of Medicare-eligible people lived in “highly concentrated” or “very highly concentrated” counties. ... [Click here and scroll down for the national map with] the level of Medicare Advantage market concentration for each county and the market share for each county's top insurer.

VNA Golf-A-Thon fundraising drivers give it their best shots Vero News, Vero Beach, FL; by Stephanie LaBaff; 7/24/25 Generosity was in full swing during the 35th annual VNA & Hospice Foundation Golf-A-Thon, held this year at the Vero Beach Country Club, where pros representing 13 local clubs spent a full day on the course playing more than 100 holes of golf. “It’s a beautiful day here at the Vero Beach Country Club, and I really want to thank everybody who participated today,” said Carol Kanarek, VNA & Hospice Foundation board chair, thanking the professional golfers, volunteers and staff of the VNA and the VBCC. “This has been a year of events for the VNA,” said Kanarek, referencing the VNA’s 50th anniversary, the 35th anniversary of the Golf-A-Thon and the 25th anniversary of the Hospice House. ... Co-chairs Nancy Edmiston and Karen Formont scored a perfect game with the assistance of their team, raising more than $484,000 in critical funding for VNA & Hospice Foundation programs and services. Editor's Note: Congratulations VNA & Hospice Foundation on this "more than $484,000" raised, and your 50th, 35th, and 25th anniversaries!

Post-acute care faces labor shortage amid immigration scrutiny Modern Healthcare, Post-Acute Care; by Diane Eastabrook; 7/23/25 Nursing homes and home care operators are scrambling to find replacements for foreign-born workers no longer eligible to work in the U.S. due to changes in immigration policy. Providers in Boston, Atlanta and other cities with large populations of immigrants, and Haitians in particular, say the loss of foreign-born workers in an already tight job market is making it increasingly difficult to meet the growing demand for care — and will likely drive up care costs. Last month the Homeland Security Department began notifying more than 500,000 Cubans, Haitians, Nicaraguans and Venezuelans that it terminated a Biden-era program that allowed them to live and work in the U.S. It said those who have not attained legal status to remain in the U.S. outside of the program must leave immediately. Despite court challenges, the federal government also aims to end another program in early September that grants temporary protected status to Haitians and Venezuelans who have lived in the U.S. for more than a decade. [Full access might require subscription.]