Literature Review

Reimagining care and research for Amyotrophic Lateral SclerosisJAMA Neurology; Suma Babu, MBBS, MPH; Joshua M. Sharfstein, MD; Eva L. Feldman, MD, PhD; 1/25Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease involving progressive motor neuron degeneration. In 2022, US Congress and the National Institutes of Health (NIH) commissioned the National Academies of Science, Engineering and Medicine (NASEM) to identify priorities to make ALS a livable disease within a decade. After extensive deliberations and input from the public, researchers, and persons with lived experience, the committee released its report, Living With ALS. To accelerate progress in patient care and therapeutics, one of the report’s major recommendations was for the National Institute of Neurological Disorders and Stroke (NINDS) to fund a clinical trials network dedicated to ALS that is distributed across diverse geographic regions and integrated within a novel hub-and-spoke system of care and research for ALS. The hubs are ALS Centers of Excellence that provide patient care and research, both basic and clinical, while the spokes represent a large number of community and regional ALS clinics that provide care and link to hubs for research. By integrating ALS clinical trials within this structure, we have the potential to transform ALS care, drive innovation in ALS therapeutic development, and pave the way for breakthroughs in other neurodegenerative diseases. 

[Updated] Trump administration suspends hospice Special Focus Program Hospice News; by Jim Parker; 2/14/25 The Trump Administration has suspended implementation of the hospice Special Focus Program. Finalized in the 2024 home health payment rule, the program is designed to identify poor performing hospices, mandate quality improvement and in some cases impose additional penalties. However, stakeholders in the hospice space have contended that the agency’s methodology for selecting hospices for the program is deeply flawed. Notice of the suspension appeared [Friday, 2/14] on the U.S. Centers for Medicare & Medicaid Services (CMS) website.Editor's note: Click here for "Hospice leaders applaud CMS’s decision to reevaluate Special Focus Program, call for meaningful reforms," posted 2/17/25.

Teleios announces completion of Boomer End-of-Life Care Survey Teleios Collaborative Network (TCN), Hendersonville, NC; by Tina Gentry; 2/12/25 Teleios Collaborative Network (TCN) announced the completion of its survey titled “What Baby Boomers Want in End-of-Life Care.” This survey aimed to gain insights into the healthcare preferences and needs of the Baby Boomer generation as they age, transition into retirement and seek end-of-life care. On February 5th, TCN’s Visioneering Council, which comprises member CEOs, C-Suite staff, and marketing managers, gathered to discuss the survey results and explore the best ways to utilize this information to enhance patient care. Before reviewing TCN’s survey findings, Matthew Wilkinson from NPHI and Bill Keane from Emergence presented results from NPHI’s “Aging and End of Life Care Survey.” Additionally, Dr. Terry Fulmer provided insights from the John A. Hartford Foundation’s survey titled “What Older Adults Want from Health Care.” TCN President and CEO Chris Comeaux said, “Over my career, we have been honored to care for the greatest generation. Now that we are at the dawn of the baby boomers being the majority of those we will be honored to care for as they enter their twilight years. Knowing what they expect, what they care about, what they do not want to worry about, all of this is such important data to ensure hospice over the next 30 years is providing an even greater service to patients and families. That’s what this study was looking to accomplish. It’s a great start in that direction.” 

Hospice advocates push bill for a third time despite two Hochul vetoes Spectrum News 1, New York State; by susan Arbetter; 2/12/25 Last spring, Capital Tonight sounded an alarm about for-profit hospice care. The Federal Bureau of Investigation (FBI) had just issued public warnings about for-profit hospice fraud in four states; it was alerting consumers to a scam in which patients were being enrolled without their knowledge by recruiters who were “selling” hospice to people who weren’t eligible. Hospice fraud like this has also been extensively reported by The New Yorker and Pro Publica. After Gov. Kathy Hochul twice vetoed a bill preventing the expansion of for-profit hospice in New York, a new bill (S.3437/ A. 565) is being introduced by the chair of the state Senate Finance Committee, Liz Krueger, and chair of the state Assembly Health Committee, Amy Paulin. “If a family is faced with a loved one that is dying, they should not also be faced with the possible incentive of money,” Assembly member Paulin told Capital Tonight. There are a variety of drawbacks to for-profit care, and there is clear data that shows profit motives drive for-profit hospice to neglect patient care and prioritize volume over quality.

[Turkey] Actual roles of Occupational Therapists in palliative and hospice care: A scoping reviewAmerican Journal of Hospice and Palliative Medicine; Güleser Güney Yılmaz, PhD, OT; Hülya Yücel, PT, PhD; Milda Gintiliene, MD; 1/25 Occupational therapists play a crucial role in coordinating and facilitating safe transitions from the hospital to home, aiming to improve the overall quality of life and reduce hospital stays. Various roles of occupational therapists have been defined in palliative care: discovering occupational meaning in the last periods of life and supporting occupational participation, management of persistent physical and psychological symptoms, especially pain and fatigue, improving or supporting the quality of life for individuals under palliative care, supporting mental well-being, supporting social participation, use of adaptive technologies, providing individuals with confidence and comfort. Occupational therapists also have various duties in maintaining palliative-hospice care at home include evaluating the individual at home and supporting home care and rehabilitation after discharge. Interventions for caregivers or supporting caregivers who have lost their roles, occupations or jobs in the care process are also among the roles of occupational therapists.

Proposed framework for setting practical and ethical boundaries in medicineJAMA Internal Medicine; Sarah C. Hull, MD, MBE; Nancy R. Angoff, MD, MPH, MEd; 2/25At a national conference session addressing challenges for women in cardiology, one of us (S.C.H.) was struck by a junior attending physician’s account of her struggle to establish boundaries, expressing her desire to be helpful and collaborative as well as her reticence to decline requests lest she appear unkind. Reflecting on my own experience, I realized that women are often socialized to avoid saying no for fear of disappointing others or appearing selfish, but this socialization has not served us well. Indeed, this is a common refrain we have heard from young women entering the medical profession. Our anecdotal experience matches data suggesting that, compared with men, women are more likely to be asked and less likely to decline low-promotability task requests.

Health policy challenges for 2025 and beyondJAMA Health Forum; Lanhee J. Chen, JD, PhD; 1/25Despite multiple reform attempts, the US health care system is still burdened by high costs, limited access to quality care, and policies that have resulted in the inefficient delivery of care. However, technological advances, insights from the COVID-19 pandemic, and approaching policy deadlines, such as expiration at the end of 2025 of enhanced coverage subsidies available through the Affordable Care Act (ACA), offer policymakers a reason to act. The next few years will present policymakers with opportunities to address key health care challenges, including the future of Medicare, the continuing implementation of the ACA, and the health care provisions included in the federal tax code. The new administration and Congress will have their hands full in 2025 because the expiring tax and subsidy provisions are action-forcing events. Lawmakers will face a unique opportunity to reform the system in a way that improves accessibility and affordability and enforces some measure of fiscal discipline, and to make decisions that could positively affect the future of health care for millions of individuals in the US.

Risk factors for and health status of socially isolated adultsJAMA Network Open; Tarun Ramesh, BS; Kushal Kadakia, MSc; Marcela Horvitz-Lennon, MD, MPH; Joshua Breslau, PhD, ScD; Hao Yu, PhD; 1/25In 2023, the Surgeon General issued an advisory on the epidemic of loneliness and social isolation, calling for more research and policy interventions to address these challenges. The overall prevalence of social isolation in our study was 3%, which is lower than other determinants of health, such as smoking, poverty, and inadequate health insurance. Our results indicate 3 broad and likely interrelated populations at risk for social isolation, including racial and ethnic minority groups, those with financial insecurity (ie, unemployed, uninsured, lower income), and those with chronic health conditions, with depression being a large factor. We also found that the socially isolated adults reported worse health status compared with those without social isolation.

Measures to prevent and control COVID-19 in skilled nursing facilities-A scoping reviewJAMA Health Forum; Benjamin E. Canter, OTD; Agne Ulyte, MD; Brian E. McGarry, PhD; Michael L. Barnett, MD, MS; 1/25Skilled nursing facilities (SNFs) experienced high mortality during the COVID-19 pandemic, leading them to adopt preventive measures to counteract viral spread. This scoping review identified 16 preventive measures, both nonpharmacologic (eg, staffing, visitor restrictions) and pharmacologic (eg, vaccines, antivirals) interventions. Nonpharmacologic measures were widely implemented but lacked evidence for effectiveness, whereas vaccinations and antivirals showed substantial benefits but were underutilized; up-to-date vaccination status was suboptimal in residents and staff and only a minority of infected residents received antiviral treatment.

Partnership grows to help more clinicians of color find community in Vermont Vermont Business Magazine - Vermont Biz (VB), South Burlington, VT; by Tim, The University of Vermont Medical Center; 2/18/25 A growing partnership between University of Vermont Medical Center and the Vermont Professionals of Color Network (VT PoC) aims to help people of color adjust to life in Vermont and build the personal and professional relationships community leaders say are crucial to both individual wellbeing and keeping residency students in the state after they complete their clinical training. “During my 20 plus years here, I have heard from so many black and brown people about how difficult it can be to adjust to life in Vermont – and this goes for medical residents too,” said Tino Rutanhira, co-founder and co-executive director of VT PoC. "... Without support, many of these professionals decide to leave Vermont at a time when our state desperately needs young, skilled and diverse people to help it grow.” Editor's note: Parteners listed include The University of Vermont Health Network - Home Health & Hospice.

[UK] Campaign focuses on hospice's work: [This is Hospice Care] The Free Library; by Sam Volpe; 2/17/25 Tyneside Hospice is taking part in a new national campaign highlighting their "vital role" - while one son has paid tribute to the care his mother received in her final days. St Oswald's Hospice in Newcastle is one of more than 140 hospices taking part in a new campaign called "This is Hospice Care" which is designed to demystify the role hospices play in our communities. [England, Scotland and Wales] Click here for "This is Hospice Care | UK," on the St. Oswald's Hospice website.

Hospice finance 101 and the gift of mortalityPost Independent; by Peter Schoomaker, Homecare & Hospice of the Valley CFO; 2/19/25... [Practical information about hospice expenses, like labor and mileage reimbursement with. "For our agency, we estimate our clinicians will drive more than 250,000 miles in 2025, slightly more than the distance from the Earth to the Moon."] And now a more personal note … I am grateful for the last seven years of my career working in hospice care. Most importantly, I am grateful for the opportunity to integrate into the clinical experience of hospice. When I shadow an admission visit or attend the hospice interdisciplinary meeting, I am reminded that hospice is a world of YET (You’re Eligible Too). The only thing that separates me, and our hospice patients, is time. My relative physical strength will eventually shrink. My mental faculties will fade. And there is a large possibility, at some point in my life, that I will depend almost entirely on others to help with most activities of daily living. This is true for all of us. ... ... Recognizing this truth opens a path to humility. A path to step away from the ego, even for a moment, and really let go. ... When I reflect on this, I realize what a gift our mortality is. To know that our choices matter because we never know much time we have left. A sincere thank you to all our hospice, homecare and private duty clinicians — and our administrative teams that support them. It is genuinely noble work.Editor's note: "A sincere thank you" to Peter Schoomaker, Homecare & Hospice of the Valley CFO

New tech, new problems: Why application development needs a big-picture view Software Development Times (SD Times); by Sharul Sangl; 2/19/25... [Many] organizations have approached [technology] innovation without a comprehensive strategy or holistic view of their applications, simply focusing on adding the latest features or trendy tools. As a result, they are facing challenges related to application performance, scalability, efficiency, and security. To ensure the success of application innovation, enterprises must maintain a big-picture view of their applications.  ... When approached strategically, organizations are in a prime position to capitalize on current technologies to truly innovate. ...