Literature Review

Background on CMS’s anti-fraud efforts in hospice careAEI - The American Enterprise Institute; by James C. Capretta; 5/21/26 ... For broader context, Congress added hospice coverage to Medicare in the 1980s to provide lower-cost and more patient-centered settings for terminally ill beneficiaries. ... Like home health, the hospice benefit is vulnerable to abuse because the barriers to entering the market are lower than in more regulated settings. The capital investment to get started is minimal in comparison with building a new hospital, outpatient clinic, or nursing home. Further, the potential profit margins are high if a service provider is confident that the per diem is above what is needed to provide the required services.Although CMS’s focus on fraud in hospice care is warranted, stronger oversight by itself may not produce large program savings. In theory, more use of hospice care could lead to lower overall costs if the sponsoring agencies are competent and can help their patients avoid costly hospital or nursing home admissions. CMS’s investigations need to be subtle enough to weed out the bad actors without making it overly difficult for vulnerable patients to get the care they need in their own homes or in other low-cost community settings.

[New Zealand] Hospices turning away dying patients as funding shortfall bites Europe Says | New Zealand; 5/16/26 Hospices across New Zealand are being forced to turn away dying patients as they struggle to cope with rising costs and insufficient government funding. There are 32 hospices nationwide providing palliative care, but the sector says it needs an additional $80 million to $100 million a year from the Government to remain financially sustainable. 

Ohio nurses help hospice patients navigate end-of-life decisions Public News Service; by Nadia Ramlagan; 5/15/26 On the heels of National Nurses Week, hospice nurses are raising awareness about access to compassionate end-of-life care and medical decisions in the Black community. ... Ottamissiah "Missy" Moore, a longtime hospice nurse and member of the African American Leadership Council for Compassion & Choices, said her personal experience relying on hospice care showed her how important it can be for families. ... A recent study published by the Journal of the American Medical Association found around 34% of Black study participants died while using hospice services compared to more than 46% of their white counterparts. Moore added the disparity echoes other racial inequities in health care, such as nonwhite people being less likely to receive pain medications and higher rates of maternal mortality. 

The professional guest: Ethical challenges in home-based end-of-life care among interprofessional teamsNursing Ethics; Inbal Halevi Hochwald, Gila Yakov, Moran Weiss, Liron Inchi, Inbal Mayan, Ron Sabar; 4/26Home-based end-of-life palliative care presents unique ethical challenges that differ fundamentally from those in institutional settings. Healthcare professionals navigate the complex role of being both clinical experts and guests in patients' domestic environments, operating in a context where professional authority is continuously negotiated rather than institutionally established. Home-based palliative care places professionals at the intersection of clinical responsibility and domestic sovereignty, a position for which existing frameworks offer insufficient guidance. Addressing these structural and relational challenges requires both individual-level preparation, including training in ethical decision-making in low-control environments, and systemic policy reform.

Generous community support drives new hospice home project: longtime community member LeRoy Havel donates $500,000 to End of Life Hospice Home coming to Washington Southeast Iowa Union, Washington, IA; by Giovanni Coronel; 5/11/26 A generous donation of $500,000 from longtime community member and benefactor LeRoy Havel was given in support of an End of Life Hospice Home (EOLH) coming to Washington during a presentation on May 8. A EOLH is a place where individuals can spend their final days in comfort, dignity, and peace with around-the-clock-care in a home-like setting. It will be the first one of its kind in Washington and in Washington County.

We can fight fraud without threatening access to care RealClear Health; by Peter Pitts; 5/8/26 ... In recent months, the Trump administration has identified a small but significant number of bad actors that have cheated the system. These fraudsters aren’t just stealing taxpayer dollars — their actions are threatening access to quality care and undermining patients and families’ trust in Medicare. Those criminals should be removed from federal programs and prosecuted. ... But that’s not the full story. Not even close. ... This doesn’t have to be a choice between fighting fraud and protecting access to care. We can and must do both: root out fraud and protect access to high-quality hospice and home health care at the same time.

Where do unhoused people go to die? The Denver Clarion, Denver, CO; by Hawke Baldwin; 5/4/26 ... On April 29th 9News presented its documentary “Refuge” in DU’s Anderson Academic Commons, giving viewers a glimpse into the reality of death. “Refuge” is a sad yet inspiring story that delves into end-of-life care for those both terminally ill and unhoused in Denver. ... A person featured in the film is James Patrick Hall, a Gregorian Frier and former engineer who founded Rocky Mountain Refuge, a haven for those in need of end-of-life care. The refuge is a hospice center providing home-style care for free. ... The documentary follows four unhoused and terminally ill individuals: Jennifer, Renne, James and Jose. All of whom were unable to find appropriate care anywhere else, so they turned to Rocky Mountain Refuge.

End-of-life doctors reveal 5 common fears people face in their final moments SavingAdvice.com; by Amanda Blankenship; 5/3/26  Most people avoid thinking about death, but doctors who work in hospice and palliative care say the same fears come up again and again. ... Research shows that death anxiety is common, with many people experiencing fear tied to the process of dying, not just death itself. ... here are five of the most common fears [identified by these doctors] among people facing their final moments.

Assessment of survival and the decision to engage in palliative care when facing a defeat in the ICUMedical Decision Making; by Hossam Gad, Daniel Diedrich, and Krzysztof Laudanski; 4/24/26 Highlights

[Singapore] Factors associated with caregiver burden among family caregivers of patients on home-based palliative care: A systematic reviewPalliative Medicine; by Wei-Ling Koh, Jerrald Lau, Chermaine Ang, Choon Meng Yee, Sara Ho, Ker-Kan Tan; 4/26Home hospice services are increasingly central to palliative care as more patients express preference for care or death at home. In these settings, the role of family caregivers becomes crucial.  Heterogeneity across studies highlighted uniqueness of patient-caregiver dyads on caregiver burden - for instance, family caregivers with multiple social roles may face heightened pressure from meeting patients' care demands. Other factors include logistical, financial or care arrangement matters. Caregiver burden interventions should adopt multi-pronged approaches to ensure holistic support for patients and family caregivers, such as incorporating both medical and psychosocial support to enhance wellbeing of both parties.

Unity receives $10,000 grant from the Door County Community Foundation The Chamber Manitowoc County, De Pere, WI; Press Release; 4/28/26 Unity is pleased to announce $10,000 in funding from The Door County Community Foundation on behalf of Bargains Unlimited Charitable Fund and Growing Older Fund to cover costs related to Unity’s palliative program, Supportive Care Management (SCM). As identified through Discuss Door County and reported in the 2023 American Community Survey Demographic and Housing Estimates, Door County is one of the oldest counties in Wisconsin, with 41% of residents age 60 or older and projections approaching 50% by 2030. 

Hope, uncertainty, and hard truths: the complexity of goals-of-care discussions in oncology OncLive - Oncology Live; by Maurie Markman, MD; 4/10/26 ... While appreciating considerable variation in how individuals deal with their [cancer] diagnosis, as well as understanding the potential for difficult conversations regarding the specifics of available therapeutic options and anticipated statistically defined survival, it remains essential that such discussions be held. ... What is the most appropriate conclusion regarding a goals-of-care discussion? Should this patient have been offered further testing and therapy, or, based on the facts of this case, was hospice referral perhaps a more reasonable suggestion?