Literature Review

Demystifying the End: Hospice care impact on the Black community Defender; by Laura Onyeneho; 4/22/25 Monica James has seen firsthand the confusion and emotional strain families face when end-of-life care isn’t discussed early enough. She works for the non-profit organization Houston Hospice as the Community Engagement Coordinator, serving 13 counties across Southeast Texas. ... According to data collected by the National Hospice and Palliative Care Organization, Black Americans on Medicare seek hospice and palliative treatment 13% less than their white counterparts. For African American, Afro-Caribbean and African immigrant families, generational trauma and a lack of trust in the healthcare system often lead to delayed decisions about hospice care. “There’s been a historical gap in access and trust,” said James. “Our goal is to show up consistently, to listen and to let these communities know they have options and that they’re not alone.”

How housing instability complicates end-of-life take care of growing old unhoused populations Health Medicine Network; by Pilar Ingle; 4/8/25 Research estimates that one-third or more of the unhoused inhabitants within the U.S. is age 50 or older. Unhoused individuals of all ages face high rates of ... severe sickness. They additionally die at younger ages in contrast with people who find themselves not unhoused. Yet, there are few choices for palliative and end-of-life care for unhoused individuals. ... As a health care and aging researcher, ... I interviewed 17 well being care and social service suppliers in Colorado to grasp how they attempt to deal with palliative and end-of-life wants for his or her unhoused shoppers.

Trump administration to shut down CMS, HHS minority health offices amid restructuring Healthcare Dive; by Rebecca Pifer; 3/31/25 The CMS and HHS offices that coordinate efforts to eliminate health disparities are being shut down completely as part of the Trump administration’s overhaul of the federal healthcare department, according to sources with direct knowledge of the matter. Closing the offices will impact efforts to improve the health of underserved patients in the U.S. — and is probably illegal, according to experts. ... Shutting the offices, which were authorized by the Affordable Care Act more than a decade ago, may also be illegal, according to legal experts. [Continue reading ...]

Seen Health opens first PACE Center in San Gabriel Valley, delivering a new standard of culturally-focused senior care PR Newswire, Alhambra, CA; by Seen Health; 3/18/25 Seen Health, an innovative health care provider transforming senior care, celebrated the grand opening of its first flagship Program of All-Inclusive Care for the Elderly (PACE) center in San Gabriel Valley on Saturday, March 15. ... With California's rapidly growing senior population, the need for innovative care has never been more urgent. In San Gabriel Valley alone, over 17% of residents are 65 or older, with over 300,000 seniors in the area and approximately 30% identifying as Chinese-American.  ... Designed for comfort and connection, Seen Health's PACE center features open communal areas, natural lighting, and cultural elements that promote dignity and social interaction. Unlike traditional senior services, Seen Health blends expert clinical services with highly personalized social and cultural support, ensuring care feels familiar, enriching, and provided in the participants' native languages. [Continue reading ...]

Medical interpreters’ experiences with patients who are near end-of-life and their family membersJournal of Pain and Symptom Management; Joycelyn Howard DNP, RN, AGCNS, ACHPN ; Alexia M. Torke MD, MS; Susan E. Hickman PhD; Greg Sachs MD; Sylk Sotto-Santiago EdD, MBA, MPS; James E. Slaven MS, MA; Denise Robinson PhD, RN, FNP; 3/25In 2019 the United States Census Bureau reported 8% of the United States Population “speak English less than very well”. Ensuring individuals with a non-English language preference (NELP), previously referred to as limited English proficiency, have equitable access to healthcare includes providing high quality interpreter services. Although self-efficacy for interpreting EOL [end of life]conversations is generally high, interpreters desire education about EOL care. Interventions are also needed to address the high emotional toll of interpreting EOL conversations. Education and training about EOL care may help them to not only convey information accurately but also cope with emotional nuances characteristic of these significant conversations, ultimately elevating the quality of care for patients and family members in vulnerable and important moments.

Wealth disparities in end-of-life symptom burden among older adultsJAMA Network Open; Irena Cenzer, Kenneth E Covinsky, Sarah H Cross, Claire K Ankuda, Lauren J Hunt, Melissa D Aldridge, Krista L Harrison; 3/25This cohort study found that lower wealth was associated with a higher symptom burden at the end of life, mediated in part by higher rates of multimorbidity, functional impairment, and dementia. These findings highlight the need for policies and programs to support patients with lower financial resources to improve end-of-life experiences and mitigate wealth disparities. 

J-Sei Home closes after 30 years, leaving Bay Area Japanese seniors in need KQED, San Francisco, CA; by Cecilia Lei; 3/10/25 ... For decades, Bay Area Japanese American families have sought culturally sensitive senior care facilities like J-Sei Home for aging loved ones. Community members said that about a decade ago, there were approximately 10 Japanese senior care homes in the region. Today, that number has declined by about half. The most recent closure came in January, when the last residents of J-Sei Home moved out, and the facility permanently closed its doors after 30 years of operation. A majority of the displaced residents were Japanese Americans in their 90s and had cognitive impairment. ... They had tender caregivers who spoke Japanese. They ate familiar comfort foods like miso soup and pickled vegetables, and they participated in daily activities such as drum circles and singing Japanese songs. ...

Explaining racial and ethnic disparities in advance care planning: A decomposition analysisJournal of Pain and Symptom Management; Yifan Lou, Emma Zang, Qianqian Li; 2/25The ACP [advance care planning] disparities between White and Hispanic populations were nearly twice as large as the disparity between White and Black populations. Interventions targeting less educated older Black and Hispanic individuals should be prioritized to narrow the ACP disparity. Negative healthcare experiences in previous care and household dynamics should be addressed while working with Black and Hispanic older adults, respectively.

Qualitative analysis through the lens of minority nurses American Nurse; by Sonya Moore, PhD, RN, CRNA; Carolyn Still, PhD, RN; and Siobhan Aaron, PhD, RN; 3/4/25 Many argue that experiences of discrimination, racism, and microaggression (intentional or unintentional) serve as key barriers to the recruitment and retention of diverse nurses. Iheduru-Anderson, who interviewed 30 Black nurses, noted that despite an increase in the number of Black nurses in the U.S. workforce over time, they remain significantly underrepresented in leadership and faculty positions. The study identified several themes that contribute to lack of advancement, including maintaining White comfort, distrust, lack of role models and representation, expectations about leadership roles, and the ineffectiveness of advanced degrees in securing advancement. 

Impact of patient and caregiver beliefs on utilization of hospice and palliative care in diverse patients with advanced lung cancerAmerican Journal of Hospice and Palliative Care; Melanie Besculides, Melissa B Mazor, Carolina Moreno Alvarado, Mayuri Jain, Lihua Li, Jose Morillo, Juan P Wisnivesky, Cardinale B Smith; 2/25A prospective cohort study of newly diagnosed patients ≥18 years old with advanced lung cancer and their caregivers was conducted. Participants completed validated surveys at multiple points and electronic health records were reviewed to evaluate utilization. Minoritized lung cancer patients held more negative beliefs about HC/PC [hospice care/palliative care] yet were more likely to receive HC/PC. Further work is needed to understand factors that impact utilization among diverse patients with advanced cancer.

Juniper House on National Historic Register K103, Portland, OR; 2/18/25 The Juniper House is among Oregon's latest entries in the National Register of Historic Places ... for its statewide significance as Oregon's first end-of-life care home dedicated exclusively to residents with HIV/AIDS [May 1987] and for its substantial impact on statewide healthcare and LGBTQ+ history. ... In addition to caring for residents, the work of Juniper House included advocacy and educational efforts that were crucial in shaping public opinion and responses to HIV/AIDS.

YoloCares: Breaking barriers in medicine, advancing DEI The Davis Enterprise; by Craig Dresang, Special to The Enterprise; 2/15/25 She is unassuming. She is a powerhouse. Her broad blissful smile can be disarming, but make no mistake, Jackie Clark RN, MBA, is a force of nature who knows how to get things done and how to lift people up in the process. The woman who California appointed as its first CEO for Correctional Healthcare Services, and now serves as the Board Chair for YoloCares, has some insight about the emerging challenges facing both healthcare and the country. Before her recent retirement, Clark oversaw the care of approximately 5,000 incarcerated patients annually, including one of the only hospice facilities in the country for incarcerated individuals. Clark expanded hospice care and developed a program for patients with Alzheimer’s and dementia. Recognizing the emotional impacts that an inmate’s death can have in the prison community, she also expanded an existing peer support training program to include preparing volunteers to aid hospice patients. ... Over time, Clark completely transformed the quality and delivery of healthcare in all of California’s 34 correctional facilities. ...

Immigration policies’ ‘chilling effect’ on the hospice workforce Hospice News; by Holly Vossel; 2/5/24 The White House recently issued several executive orders that have ramped up the nation’s immigration enforcement policies. The health care sector may be facing a host of staffing and operational challenges as the regulatory moves unfold, according to Hannah Liu, manager of immigration advocacy at Asian Americans Advancing Justice (AAJC). A tightening of immigration policies has come with “concern, panic and confusion” across diverse communities nationwide, Liu stated. “As the effects of these hostile immigration policies play out, patients may also face the life-or-death situations that arise from interruptions in care caused by staffing shortages,” Liu told Hospice News in an email. “Immigrants in the health care industry may fear the possibility of arrest and detention, including in workplaces like hospitals, palliative care facilities and clinics.”