Literature Review

Aging and unhoused: What end-of-life care looks like Next Avenue; by Terry Ann Donner; 12/2/24 Karen Robyn is a 62-year-old homeless woman on disability; ... she fears dying alone on the streets or in a hospital hooked up to machines she doesn't want to use. ... For the 138,098 people aged 55 and older experiencing homelessness and 5 million older adults living below the poverty level, dying alone and unhoused is a real concern.  ... However, a viable solution has been quietly growing in communities across the country. Small nonprofit community homes provide hope for terminally ill people who do not have a reliable caregiver or a stable living environment. These small homes, usually caring for up to 4 to 10 guests at a time, provide "family" caregivers and a safe place to receive end-of-life care. They are developing outside of the health care system and receive no federal or state funding. Kelley Scott, executive director of the Omega Home Network and Clarehouse in Tulsa, Oklahoma, explains that the network's mission is to "foster the development of nonprofit community homes for people who are dying and have no caregiver support" due to a lack of family, homelessness or family dysfunction. The network has 135 members with 55 homes providing care and another 70 to 80 homes in development.

[England] Hospice leaders warn hundreds of beds out of use BBC News; by Hugh Pym; 12/4/24 About 300 hospice inpatient beds are currently closed or out of use in England, hospice leaders have warned. They say a lack of funding and staff are the primary reasons why some of England's 170 hospices have had to close beds permanently or take them out of use. Hospice UK, which represents the sector, is now calling for an urgent package of government funding to prevent further cuts. The Department of Health said it was looking at how to financially support hospices to ensure they are sustainable. ... Hospice UK says about 300 beds are closed or out of use in England - out of a total of 2,200 - and the number is increasing.  Editor's note: This report is the tip of the iceberg among news articles we regularly see from England about funding, lack of government support, and extreme fundraising (in comparison to the United States) in order to provide hospice services.

705 hospitals at risk of closure, state by stateBecker's Hospital CFO Report; by Molly Gamble; 11/22/24 More than 700 rural U.S. hospitals are at risk of closure due to financial problems, with more than half of those hospitals at immediate risk of closure. The count comes from the latest analysis from the Center for Healthcare Quality and Payment Reform, which is based on CMS's October 2024 hospital financial information. The center's analysis reveals two distinct levels of vulnerability among rural healthcare facilities: risk of closure and immediate risk of closure. ... The report also analyzes hospitals facing immediate threat of closure meaning financial reserves could offset losses on patient services for two to three years at most. Currently, 364 rural hospitals are at immediate risk of shutting down due to severe financial difficulties. [Click on the title's link for] a state-by-state listing of the number of rural hospitals at risk of closure in the next six to seven years and at immediate risk of closure over the next two to three years. Editor's note: Consider how these closures impact patients' trajectories of serious illness, timely treatment plans, referrals to home health, nursing facilities, and hospice care. How do these impact your service areas? What are the root causes for so many potential closures?

Homebound seniors living alone often slip through health system’s cracks KFF Health News; by Judith Graham; 12/2/24 Carolyn Dickens, 76, was sitting at her dining room table, struggling to catch her breath as her physician looked on with concern. “What’s going on with your breathing?” asked Peter Gliatto, director of Mount Sinai’s Visiting Doctors Program. “I don’t know,” she answered, so softly it was hard to hear. “Going from here to the bathroom or the door, I get really winded. I don’t know when it’s going to be my last breath.” Dickens, a lung cancer survivor, lives in central Harlem, barely getting by. She has serious lung disease and high blood pressure and suffers regular fainting spells. In the past year, she’s fallen several times and dropped to 85 pounds, a dangerously low weight. And she lives alone, without any help — a highly perilous situation. Across the country, about 2 million adults 65 and older are completely or mostly homebound, while an additional 5.5 million seniors can get out only with significant difficulty or assistance. ... It’s a population whose numbers far exceed those living in nursing homes — about 1.2 million — and yet it receives much less attention from policymakers, legislators, and academics who study aging.

Softly into the night - An end of life love story Billings Gazette, Billings, MT; by Joseph Scheller; 11/29/24 This is a picture story about life — of joys and sadness, of challenges and struggles and sacrifice. It’s a story about dementia and caregiving. It’s a story about souls and spirit and deepening devotion. Mostly, though, this is a love story. It begins with Wayne Roberts, a big and burley guy with a Harley but as personable and approachable as they come. ... It was simple, really. When he wasn’t at work, he was caring for his wife, Lynne, who had onsets of dementia. When he was at work, he was thinking of her. I wasn’t looking for a story about caregiving but there was a warmth and openness about Wayne and Lynne that tugged me to tell one through my camera. ... [With] their comfort and trust, I became part of their world, in a way, and was able to photograph most anything. They were mostly simple scenes of daily living and caring, some sensitive, some not, and as dementia stole more and more of Lynne’s mind, her world got smaller and Wayne was her only gateway to it. He paved it with tenderness. ... [Click on the title's link to see photos and read this inspirational story.] 

Ensuring equity in access to palliative care AJMC - The American Journal of Managed Care; by Laura Joszt, MA and Alexandra Gerlach; 11/28/24 Palliative care provides high-quality care that can provide relief from the symptoms of a serious illness, but just as there are issues to accessing cancer treatments, there are barriers to palliative care, as well as racial disparities in access, explained Nadine J. Barrett, PhD, MA, MS, FACCC, senior associate dean for community engagement and equity in research, Wake Forest University School of Medicine and Atrium Health, and current president of the Association of Cancer Care Centers (ACCC). ... There are misconceptions about what palliative care is that may limit the utilization of it, but also existing disparities mean fewer Black and Hispanic individuals access these services compared with their White counterparts.

Education, telehealth, and access initiatives aim to improve cancer care for veteransOncLive; by Kyle Doherty; 11/26/24 Manali I. Patel, MD, MPH, MS, details several interventions developed to better serve veterans with cancer who are experiencing economic, social, and geographic barriers to care. Despite having the option of cancer care through the Veterans Affairs (VA) health network, veterans with cancer still experience economic, social, and geographic barriers to receiving high-quality care. This has prompted investigators to develop several interventions to better serve these patients. “Veterans have higher rates of lung cancer [compared with] civilian populations; prostate and bladder cancer [rates] are also pronounced [among] veterans, [and we also see] higher rates of melanoma, [all] largely due to exogenous exposure risk,” Manali I. Patel, MD, MPH, MS, said in an interview with Oncology Live. “One of the biggest barriers [to cancer care] for veterans is the lack of system level resources that can ensure veterans understand the diagnosis and treatment options, such that veterans receive care that is concordant with their goals, preferences, and values. Cancer care is quite complex and trying to not only coordinate care but explain the nuances in plain language is challenging. Having resources [available] that proactively assist veterans in their understanding and support them through cancer care is what is most needed to improve patient outcomes.”

Hospice of the Chesapeake launches new dementia program amid ‘urgent, significant’ need Hospice News; by Holly Vossel; 11/25/24 Hospice of the Chesapeake has unfurled a new dementia care program aimed at providing improved emotional, educational and practical support for patients and their caregivers as their conditions progress. Demographic trends were among the key factors that drove the program forward, said Monica Escalante, chief strategy and information officer at Hospice of the Chesapeake. The Maryland-based hospice and palliative care provider has seen a significant increase in demand for dementia care amid a growing population of seniors with Alzheimer’s disease and related conditions across its service region, which spans four counties in the state.

Early hospice care has transformative impact McKnights Senior Living; guest column by Aaron Housh, CEO of Good Samaritan Hospice in Roanoke and Christiansburg, VA; 11/25/24 Hospice care is more than a medical service — it’s a lifeline of compassion, connection and support during one of life’s most vulnerable moments. For more than 20 years, I’ve witnessed the profound impact hospice can have, not just on residents and patients but on the families who love and care for them. But this impact is magnified when hospice care is introduced early. ... One of the greatest gifts hospice provides is time — time to prepare, time to connect and time to say goodbye. A friend once shared how hospice changed her family’s experience with her mother’s death. The nurse spent time explaining what to expect, answering questions and normalizing the changes they were seeing. That preparation eliminated panic, allowing the family to focus on being present. Her mother passed with dignity, surrounded by love and understanding. This story illustrates what I’ve seen time and again: families who enter hospice early have the opportunity to build trust with their care team, process emotions and fully use the services available to them. Those families are better equipped to navigate the physical and emotional challenges of end-of-life care, creating space for meaningful moments and lasting memories.

Hologram technology wows rural care patients Becker's ASC Review; by Francesca Mathewes; 11/25/24 Cancer patients in rural Tennessee are testing virtual visits from hologram health consultants, Fox 26 News reported Nov. 23. The technology allows healthcare providers, in this case a physician, to consult with patients via a lifelike hologram. Clay Jackson, MD, a palliative care specialist in Germantown, Tenn., said that the technology has expanded access to care in the rural area, where patients might otherwise have to travel more than 100 miles for in-person care. "Two words: blown away. My patients can't believe how great the technology is," said Dr. Jackson in the report. "They may be a one-car family, it may be patients for whom additional travel would cause additional pain or discomfort or stress, especially those who are undergoing active treatment for their cancer," he added. The device and AI-powered spatial computing platform cost $29,000. The technology has been used in the entertainment industry and in professional sports, but this marks the first time the technology has been used in health consultations.

Elizabeth Nemacheck: The personal consequences of EPH's discontinuation of in-home hospice Estes Park Trail-Gazette, Estes Park, CO; by Elizabeth Nemacheck; updated 11/22/24 I am writing regarding Estes Park Health's decision to eliminate in-home hospice and home health care in Estes Park. Hospice helps the family by dismantling hospice, Estes Park Health has off-loaded the end-of-life burden solely on the family, during one of the most difficult and totally predictable life events. I hope to illustrate three key issues we identified by sharing my story. My father died at home in September of 2024. After his terminal cancer diagnosis midsummer, my family discussed my dad's wishes in consultation with his oncologist and primary care doctor. Like so many of us, my dad decided that he would very much like to die at home, so that became our goal. We sought alternatives to hospice support beyond Estes Park Health's discontinued home hospice care; once we confirmed that the only hospice available in Estes was in-hospital hospice, we built the infrastructure ourselves to be able to keep my dad at home. Thankfully we had the financial resources to do so, and a lot of gumption. While we were able to keep him at home, we identified three key issues:

Q&A: Prioritizing health equity with Emory Healthcare’s Chief Transformation Office CDW Healthcare - Patient-Centered Care; by Teta Alim; 11/19/24 Most healthcare organizations regularly prioritize goals to improve the patient experience and increase clinician satisfaction, aligning with the Quintuple Aim. Atlanta-based Emory Healthcare created the role of chief transformation officer to focus on these areas, and in July 2023, Dr. Amaka Eneanya became the first to fill the role. ... What would you say were the top three lessons you learned during the first year in your new role? ENEANYA: It's been a great year. For lesson one, as someone coming from a different part of the U.S., ingraining yourself and getting to know the people and the culture of the organization that you’re in, that’s important to determine the change readiness of an organization. ... The second lesson is that change is exciting. There's a lot of trepidation with change, and part of being effective with change management and transformation is really garnering excitement. ... The third lesson that continues to be pervasive in my career is that health equity is poorly understood. ... You have to start with the basic foundation and concepts of health equity before you can make initiatives, otherwise people won't understand what you're doing, and they might have a visceral response to what you're doing because of the misinformation around health equity.