Literature Review

Evaluation of reporting of race and ethnicity in hospice and palliative care researchJournal of Palliative Medicine; Kimberly S Johnson, Karen Bullock, Cardinale B Smith, Deborah B Ejem, Nadine J Barrett, A'mie Preston, Kenisha Bethea, Marisette Hasan, Ramona L Rhodes; 5/25The disproportionate impact of the COVID-19 pandemic on marginalized communities due to structural racism has led to an increased focus on diversity, equity, and inclusion in medical literature. Among the eligible articles reviewed, there were 48 unique racial and ethnic categories [and] the most common groups specified were White (N = 77), Black (N = 52), and Hispanic/Latino (N = 36). Over half of articles (n = 53, 60.2%) combined minoritized groups into a nonspecific category (e.g., "other"), and 30 (34.1%) articles specified White populations alone or White populations with a nonspecific category for other groups. Seventeen (19.3%) articles included over 90% White participants, and only 3 (3.4%) articles had a minority health or health disparity focus. In this review of high impact, practice changing articles, the lack of appropriate representation of minoritized racial and ethnic groups, frequent use of non-standard categories to describe race and ethnicity, and the small number of articles focused on health disparities raise concerns about the generalizability of research findings, equity in research processes, and attention to populations that experience disparities in palliative care outcomes.

Sacramento hospice for terminally ill homeless people to open after decade-long effort Sacramento Business Journal; by Chris Campbell; 6/9/25 A new hospice facility in Sacramento will open its doors to terminally ill homeless people on June 18. Joshua's House Hospice ... will provide end-of-life care for up to 15 residents. The project, a decade in the making, was funded by more than $3.5 million in contributions from individual donors, local foundations, the city of Sacramento and Sacramento County. "This project began with simple but profound conversations I had with people living on the streets," said Marlene Von Fredericks-Fitzwater, founder and CEO of Joshua's House. "They weren't afraid of dying, they were afraid of dying alone." The facility consists of six residential units, each approximately 670 square feet ...

Sister Grace spent her life helping the homeless. Now in hospice, she reflects on legacy and lessons WXXI News NPR, Rochester, NY; by Gino Fanelli; 6/6/25Sister Grace Miller smiles as she props herself up in her hospice bed and gently teases her strands of chestnut brown hair. “How does my hair look?” she asks. It’s the type of remark one would expect from Miller. Sister Grace is many things: a radical compassionate, a devout follower of the Catholic faith, a civil disruptor, and a wielder of a sharp, slightly sardonic wit. ... The 89-year-old champion for the homeless and destitute is dying, in hospice care at a congregation home on Carter Street. But her spirit is alive and well. “I would fight with them over whatever, whatever the people needed,” Miller said, referring to the county and city administrations she often tangled with over the years. “I would fight for the people. ... She said it was, ultimately, an undying, uncompromising commitment to the work she does as a fierce and fearless advocate for the poor.

Q&A with Jim Obergefell on the future of Supreme Court's gay marriage ruling, LGBTQ rights Fremont News Messenger; by Laura A. Bischoff; 6/1/25 In 2013, Ohioans Jim Obergefell and John Arthur flew on a medical jet to exchange vows in Maryland where same-sex marriage was legal at the time. With Arthur in hospice care for amyotrophic lateral sclerosis, time was slipping away for the Cincinnati couple and their home state of Ohio prohibited same-sex marriage. Days after their tarmac wedding, civil rights attorney Al Gerhardstein showed them a blank Ohio death certificate. "Do you guys understand that when John dies, his last record as a person will be wrong here, where it says marital status at the time of death?" Gerhardstein told them. "Ohio will say John was unmarried. And Jim, your name will not be here, where it says surviving spouse name." Brokenhearted and angry at the idea of not being recognized by Ohio, Arthur and Obergefell told Gerhardstein, yes, they wanted to do something about it. Arthur didn't live to see the fruits of that decision: On June 26, 2015, in a 5-4 decision in Obergefell v. Hodges, the U.S. Supreme Court decided states must allow for same-sex marriages and must recognize those solemnized in other states. Arthur died in October 2013 at the age of 48.

Remove barriers that restrict hospice care, Alliance offers in new report McKnights Home Care; by Adam Healy; 5/28/25 Hospice providers can boost quality and patient satisfaction with a focus on transparent, culturally sensitive communication with clients, according to a new report by the National Alliance for Care at Home. ... For the report, the Alliance surveyed 2,000 adults who either recently experienced the death of a loved one or have been involved in healthcare decisionmaking for a person with a serious illness. Respondents included individuals of a variety of ages, income levels, ethnicities and educational backgrounds. ... . For many seniors, one of the largest barriers to care is ineffective communication, the survey found. Language barriers are a significant hurdle for non-English speaking older adults, particularly those who are first generation immigrants, it noted. Many seniors are also less comfortable with technology-based communication than younger people, and prefer face-to-face conversation over text messages.

You have made the right choice Boston University School of Public Health; by Jillian McKoy; 5/18/25 Public health faces enormous challenges ahead, and as of May 17, the field officially gained 461 additional practitioners who will dedicate their professional lives to eliminating health inequities, fighting for justice, and advancing health for all. On Saturday afternoon, the School of Public Health community, families, and friends gathered at the Boston University Track & Tennis Center to celebrate the achievements of the newest generation of public health leaders at the 2025 SPH Convocation.  Dean Ad Interim Michael Stein opened the event by acknowledging that the class of 2025 is “entering a very different world than the one that existed when they began this program of studies. “They are graduating at a time of unprecedented challenge and opportunity, but I personally witnessed the strength, resilience, and purpose that defines this class.” 

It's time to talk about LGBTQ+ elder care Psychology Today - Caregiving; by Stephanie Sarazin, M.P.P.; 5/6/25 A once-hidden story is helping us think about queer kinship and caregiving. Key points:

Systemic functioning of Puerto Rican families with a cancer patient: A qualitative-oriented mixed-methods studyJournal of Health Psychology; Nicole M. Vélez Agosto; 4/25Puerto Ricans are part of marginalized communities that are impacted by health disparities, such as lifestyles, health behaviors and access to care (Simmons et al., 2011). The purpose of study was to assess systemic functioning in Puerto Rican families with a cancer patient using the Spanish translated version of the Family Genogram Interview (FGI) that measures Bowen’s four emotional processes in nuclear family and family of origin. Results suggested an acceptable reliability for the FGI-Spanish and higher presence of symptoms in a spouse or partner, symptoms in family of origin, focus on a child and emotional cutoff in family of origin. Qualitative findings suggested that main concerns for participants were related to family changes surrounding illness and familial roles, consistent with Bowen’s theory and clinical implications for designing systemic interventions for Puerto Rican families.

Administration to close HHS Civil Rights office Newsmax; by Brian Freeman; 4/28/25 As part of massive cutbacks at the Department of Health and Human Services, the Centers for Medicare & Medicaid Services will shut down their civil rights office in June, according to an email sent to staff on Monday and viewed by Politico. HHS has already been reduced by some 20% as part of overall downsizing, with Secretary Robert F. Kennedy Jr. and President Donald Trump focusing on eliminating those programs and agencies they say promote diversity, equity, and inclusion. ... Complaints that are nearing completion connected to workplace harassment and discrimination will be closed out in the coming weeks, and remaining complaints will be "transferred to an appropriate entity," the email stated.Editor's note: Data from the 2024 NHPCO Facts and Figures Report states: "In CY 2022, 51.6% of White Medicare decedents used the Medicare Hospice Benefit. 38.1% of Asian American Medicare decedents and 37.4% of Black Medicare decedents enrolled in hospice. 38.3% of Hispanic and 37.1% of North American Native Medicare decedents used hospice in 2022." The discrepancies between white and non-white decedents demonstrate double-digit differences. Extensive evidence-based research validates wide gaps in hospice/healthcare for persons whom the HHS Civil Rights office is charged with protecting. For more, visit Office of Civi Rights Home | HHS.gov and Office of Civil Rights About Us. 

How cultural shifts surrounding death reflect our evolving health priorities WorldHealth.net; 4/28/25 The culture of thinking about death is evolving in profound and lasting ways. ... Modern society is seeing an unprecedented change in the way we approach mortality since health consciousness, sustainability, and personal well-being now dictate end-of-life discussions. These cultural shifts and changing attitudes about death are indicative of our overall health interests, demonstrating how much our ways of living have crossed with our ways of dying.

Integrating social determinants into palliative care Hospice News; by Holly Vossel; 4/16/25 Strong staff education and reimbursement are among the keys to successfully integrating social determinants of health within a palliative care program. Screening tools developed by the U.S. Centers for Medicare & Medicaid Services’ (CMS) include five areas of social determinants of health: food and housing insecurity, transportation needs, utility difficulties and interpersonal safety. Supplemental domains include financial stability, employment and family and social support, among others.

Housing instability complicates end-of-life care for aging unhoused populations The Conversation; by Pilar Ingle, University of Denver; 4/7/25 Research estimates that one-third or more of the unhoused population in the U.S. is age 50 or older. Unhoused people of all ages face high rates of chronic and serious illness. They also die at younger ages compared with people who are not unhoused. Yet, there are few options for palliative and end-of-life care for unhoused people. ... In 2024, Colorado saw a 30% increase in the number of people experiencing homelessness from the year before. Nationally, 771,480 people — the highest number ever recorded — experienced homelessness last year. As the number of people experiencing homelessness in the U.S. grows, so too does the need for palliative and end-of-life care for these individuals. ... [Continue reading ...]