Literature Review

Loneliness and social and emotional support among sexual and gender minority caregiversJAMA Network Open; Zhigang Xie, PhD; Hanadi Hamadi, PhD; Kassie Terrell, PhD; Laggy George, MPH; Jennifer Wells, BA; Jiaming Liang, PhD; 12/24In the current landscape of US health care, informal unpaid caregiving provided by family members and friends is indispensable for managing diseases and ensuring long-term care in residential settings. Sexual and gender minority (SGM) adults in the US are more likely than their non-SGM counterparts to provide informal care to their family members and/or friends. Caregiving can impose substantial physical, mental, and social connection issues on caregivers.Conclusions and Relevance In this cross-sectional study of social connections, SGM adults experienced significantly higher levels of loneliness compared with straight adults, irrespective of caregiving status. 

Mobile app–facilitated collaborative palliative care intervention for critically ill older adults-A randomized clinical trialJAMA Internal Medicine; Christopher E. Cox, MD, MPH; Deepshikha C. Ashana, MD, MBA, MS; Katelyn Dempsey, MPH; Maren K. Olsen, PhD; Alice Parish, MSPH; David Casarett, MD; Kimberly S. Johnson, MD; Krista L. Haines, DO; Colleen Naglee, MD; Jason N. Katz, MD, MHS; Mashael Al-Hegelan, MD, MBA; Isaretta L. Riley, MD, MPH; Sharron L. Docherty, RN, PNP, PhD; 12/24An automated electronic health record–integrated, mobile application–based communication platform that displayed family-reported needs over 7 days, coached ICU attending physicians on addressing needs, and prompted palliative care consultation if needs were not reduced within 3 study days. In this randomized clinical trial, a collaborative, person-centered, ICU-based palliative care intervention had no effect on palliative care needs or psychological distress compared to usual care despite a higher frequency of palliative care consultations and family meetings among intervention participants.

A scoping review of end-of-life discussions and palliative care: Implications for neurological intensive care in Latin America and the CaribbeanJournal of Palliative Medicine; Monica M Diaz, Lesley A Guareña, Bettsie Garcia, Christoper A Alarcon-Ruiz, Stella M Seal, Clio Rubinos, Dulce Cruz-Oliver, J Ricardo Carhuapoma; 12/24Palliative care (PC) is essential to improve quality of life for individuals with life-limiting acute neurological conditions, particularly in resource-limited settings. In Latin America and the Caribbean (LAC), there is limited health care professional training and education on PC. Our review demonstrates a need to improve PC knowledge and access to end-of-life care resources. Regional educational efforts are needed to improve PC knowledge among health care providers who care for patients with acute neurological conditions in LAC. 

Quality of hospices used by Medicare Advantage and traditional fee-for-service beneficiariesJAMA Network Open; Lindsay L. Y. White, PhD, MPH; Chuxuan Sun, MPA; Norma B. Coe, PhD; 12/24In this cross-sectional study including 4 215 648 decedents and 2 211 826 hospice enrollees, regular Medicare Advantage and fee-for-service beneficiaries enrolled in hospices of similar quality. However, beneficiaries in Medicare Advantage special needs plans were significantly more likely than fee-for-service beneficiaries to use hospices of inferior quality, with referral networks playing an important role in hospice quality choice. These results suggest that policymakers should consider incentivizing referrals to high-quality hospices and approaches to educating beneficiaries on identifying high-quality hospice care. 

Caregiver-Reported Quality in Hospices Owned by Private Equity Firms and Publicly Traded CompaniesJAMA; by Alexander E. Soltoff, Mark Aaron Unruh, David G. Stevenson, Dio Kavalieratos, Robert Tyler Braun; 12/17/24The US hospice industry has shifted from not-for-profit to for-profit ownership models, producing concerns aboutcare quality... Hospices owned by private equity firms (PEFs) or publicly traded companies (PTCs) performed significantly worse across CAHPS measures relative to not-for-profit and non-PEF/PTC for-profit agencies... These findings raise questions as to how patients are affected when PEFs and PTCs own hospices and suggest the need for greater transparency and accountability of hospice ownership.Publisher's note: Also see related articles by these authors: Acquisitions of Hospice Agencies by Private Equity Firms and Publicly Traded Corporations, JAMA Internal Medicine, 8/21; Changes in Diagnoses and Site of Care for Patients Receiving Hospice Care From Agencies Acquired by Private Equity Firms and Publicly Traded Companies; JAMA Network Open, 9/23.

An innovative take on transforming hospice spaces with Buildner for better well-being Arch Daily; 12/19/24 Buildner has announced the results of its Hospice - Home for the Terminally Ill competition, the third in a series of architectural idea challenges focused on creating compassionate spaces for individuals facing terminal illnesses. This competition encouraged architects to move beyond traditional medical models, designing environments that prioritize comfort, dignity, and community. Participants were tasked with envisioning a facility for up to 15 visitors and five staff members, incorporating essential spaces such as a library-equipped common area, gathering room, chapel, kitchen, dining area, nurse's station, and therapy room for psychological support. Designs were grounded in theoretical sites within participants' home countries, allowing for the integration of local cultural, social, and environmental contexts. The competition highlighted how innovative, thoughtful design can provide solace and strength during life's most difficult moments. ...

There is nothing like returning to a place that remains unchanged to find the ways that you yourself have changed. ~ Nelson Mandela Editor's note: Safe travels to all through these holidays!

Providence’s joint venture with Compassus likely delayed amid concerns about patient care and rural access Home Health Care News; by Audri Martin; 12/19/24Oregon’s Health Care Market Oversight (HCMO) program is reviewing a proposal to spin off Providence’s home health and hospice services into a joint venture supported by private equity. ... OHA’s HCMO program evaluates health care business transactions to ensure they do not negatively impact citizens or communities. The program also empowers state regulators to impose conditions on acquisitions and mergers or reject deals they find anti-competitive. Critics of the deal argue that the joint venture will result in cost-cutting measures, increased staff workloads and reduced patient services. Providence is the fifth largest nonprofit health care provider in the United States, while Compassus is a private equity-backed provider of home-based care services operating in more than 30 states. 

HopeWest concludes search for new CEO The Daily Sentinel, Grand Junction, CO; by Jace Dicola; 12/19/24 HopeWest, one of western Colorado’s largest hospice and palliative care providers, has selected a new Chief Executive Officer: Deneen Silva. Silva will replace current HopeWest CEO Cassie Mitchell, who announced her “bittersweet” departure for a job closer to family in mid-October. According to a HopeWest press release, Silva will begin the new position in February 2025. Mitchell will continue as CEO until then and remain with the organization through the end of March to ensure a smooth transition. ... HopeWest is not new territory for Silva, who has served as the organization’s Programs of All-Inclusive Care for the Elderly (PACE) Executive Director since September of this year. ... Previously, Silva served as a hospice executive director in Oregon and was a primary player in establishing southern Oregon’s first PACE program.

We studied 20 places around the world and found the most common diseases linked with voluntary assisted dying Medical Xpress; by Eliana Close and James Downar, The Conversation; 12/18/24 As of 2023, 282 million people lived in regions where voluntary assisted dying is legal. Jurisdictions such as the Netherlands, Belgium and Oregon have had these laws in place for decades. Other countries, including Canada, Spain, New Zealand and Australia, have passed reforms more recently. ... Debates about voluntary assisted dying are often highly polarized. Understanding the factors driving assisted dying is essential for evidence-based debates and for improving care for people with serious conditions. In a recent study, we examined data from people accessing voluntary assisted dying in 20 jurisdictions around the world. In particular we looked at what diseases they had. ...  With an international team of researchers, we looked at the role disease plays in voluntary assisted dying. We analyzed publicly available data from 20 jurisdictions in eight countries between 1999 and 2023. Overall, most people who accessed voluntary assisted dying had cancer (66.5% of cases). Neurological diseases were the second most common (8.1%), followed by heart (6.8%) and lung (4.9%) conditions. 

Sierra Hills assisted living employees in Cheyenne to strike over staffing issues' Wyoming Tribune-Eagle, Cheyenne, WY; by Noah Zahn; 12/18/24 In March, a resident at Sierra Hills Assisted Living in Cheyenne fell and hurt their hip and shoulder. A CNA at the facility reported that the resident could not be moved without causing shoulder pain, noting that they had likely broken their shoulder and hip, according to a report from the Wyoming Department of Health. The resident was bed-bound, in “excruciating pain” and screamed for hours, which frightened the other residents. The CNA stated this was “the worst thing she had ever experienced.” At the time, the resident was one of six hospice patients at the assisted-living facility. Sierra Hills made hospice care available at the facility shortly after the COVID-19 pandemic. When hospice nurses were unavailable, the burden of care fell to the CNAs and RNs on staff. The CNA caring for this resident in March stated it was difficult to get hospice to respond on the weekends, saying that there was an 80% chance hospice would answer a phone call and a 50% chance a hospice nurse would come to the facility. Six days later, the resident died. Editor's note: Click on the title's link to continue reading. This strike--reportedly related to staffing--appears to be related extra responsibilities on the staff, because of the hospice's limited responses on weekends. This is 2024; not 1974. How does this scenario relate to your hospice triage, hours, staffing, incident reports, community partnerships? 

Mom, 26, dies days after choosing to enter hospice following 13 years of living with kidney failure (exclusive) People; by Zoey Lyttle; 12/18/24 Though she left behind a 4-year-old daughter, Sara Long told PEOPLE her feelings about death were "more certain" than they'd ever been when she started end-of-life care. “I think a lot of people spend a lot of time thinking about what it means to have a good life. And don't get me wrong, I did that too,” Sara Long, 26, told PEOPLE over the phone just shy of a week before she died at the hospice facility into which she had just recently moved. ... Long said she’s spent “the last two or three years” deliberating about her idea of a “good death.” She decided that it wasn’t just about how she would experience these last expected few weeks of her life in hospice. What Long really wanted was to be surrounded by her most precious loved ones — including her husband Justin, 32, and their 4-year-old daughter Riley Jean — but she didn't want them to watch her die while intubated and attached to hospital equipment as she was half of her life. “I just feel like if I pushed it any harder, then I was going to get to a place where it was going to be outside of my control,” said the mom of one. “I was going to wind up dying in a hospital alone, afraid, full of tubes, scared. My daughter wouldn't be able to be part of the process, and it would just be really lonely, and that's really not the goal.” Detached from the familiar yet foreign medical equipment, Long told PEOPLE she was freed from fear knowing she would only survive another couple of weeks in hospice. (She died with a week less than anticipated.) Editor's note: This another follow-up post to this profound young woman's story that we post on