Literature Review

Families value flexibility and compassion in end-of-life care for children with cancer Hematology Advisor; by Megan Garlapow, PhD; 12/12/24 Bereaved families of children who died of cancer expressed a strong desire for high-quality end-of-life care that balanced comfort with continued treatment efforts, particularly chemotherapy, according to results from a study published in Cancer. Families did not perceive a conflict between comfort care and the pursuit of chemotherapy, seeking both as integral parts of their child’s final days. Despite variations in race and location, there was no clear preference for home or hospital deaths, ... Instead, decisions surrounding the location of death were often driven by the child’s preferences, medical needs, the impact on other family members, and prior experiences with death. ... Family decision-making was centered on maintaining hope, avoiding harm, and doing what was best for their child and themselves, with religious beliefs playing a significant role.

New fellowship will help imprisoned women plan for end of life Washington State University - WSU Insider; by Scott Swybright; 12/9/24 Incarcerated individuals have few personal rights, but one they do retain is the ability to create advance directive plans for their health care. Unfortunately, few know that this is the case. A new project led by a Washington State University graduate student will educate more incarcerated people about their options as they approach the end of their lives. “When folks are incarcerated, they lose most of their bodily autonomy and basically become property of the government,” said Tosha Big Eagle, a doctoral student in WSU’s prevention science program at the WSU Vancouver campus. “Advance directives are one outlier, but nobody tells them about that right.” To help educate prisoners, Big Eagle recently received a fellowship from The Order of the Good Death, a group helping all people face end-of-life concerns, fears, and legalities. Big Eagle’s project will focus on ensuring incarcerated people at the Washington Corrections Center for Women (WCCW) have access to end-of-life resources.

From sleeping in cars to having an apartment: Season for Caring helps once-homeless families Austin American-Statesman; Austin, TX; by Nicole Villalpando; 12/8/24 When Thamairis Canales Yanez learned this year that she had been selected for the Austin-American Statesman's Season for Caring program, "what I did was thank God," she said. ... The 45-year-old and her 14-year-old daughter, Ivanna, came to the U.S. from Venezuela after Yanez's dental business was taken away by the government, and she feared for her daughter's life. She is trying to rebuild her life in America, but it has been difficult. At one point, she and Ivanna were living in her car. She has breast cancer that has spread to her brain. She is unable to work. Often when Season for Caring comes into the lives of the featured families, it is during one of their darkest times.  ...  "I have seen the impact on families," said Robin Clemons, chief development officer at Hospice Austin. "Imagine facing the end of life, and they can't pay their rent. (With Season for Caring funds) they don't have to worry about those types of needs. The stress for the caregiver, it relieves that burden."

Resources are expanding for older adults on their own California Healthline; by Judith Graham; 12/9/24 Jeff Kromrey, 69, will sit down with his daughter the next time she visits and show her how to access his online accounts if he has an unexpected health crisis. Gayle Williams-Brett, 69, plans to tackle a project she’s been putting off for months: organizing all her financial information. ... Until a few years ago, few resources were available for this growing slice of the older population. Now, there are several Facebook groups for solo agers, as well as in-person groups springing up around the country, conferences and webinars, a national clearinghouse of resources, and an expanding array of books on the topic. [Click on the title's link to read more.]

Stillwater Hospice hosts month LGBTQ+ grief group Northeast Indiana Public Radio, 89.1 WBOI, Fort Wayne, IN; by Ella Abbott; 12/5/24 Stillwater Hospice has a grief support group for those in the LGBTQ+ community, offering a safe, affirming space to open up about the challenges of loss. ... The group was started in 2022, following the opening of the Fort Wayne Pride Center downtown. Stillwater director of communications Bonnie Blackburn-Penhollow said people in the LGBTQ+ community can have additional stressors added onto their grieving. “They may not feel like they can have grief, or express their grief, if their family is not approving," she said. "They need to be able to talk to people who understand what those kind of constrictions on life are like.” The goals of the group are to create coping strategies for navigating grief, build resilience while honoring loved ones and address the unique experiences and challenges faced by LGBTQ+ individuals while grieving.

Embracing well-being at the end of life Phaneuf Funeral Homes & Crematorium; by Phaneuf; 12/5/24At the 29th Annual Fall Hospice & Palliative Care Conference, Dr. Ira Byock delivered a thought-provoking keynote challenging the misconceptions surrounding hospice and palliative care and illuminating a brighter path forward for individuals, families, and caregivers. ... Far too often, hospice and palliative care services are seen as a last resort or equated with “giving up.” Dr. Byock pushed back against this notion, emphasizing that hospice and palliative care are not about death but about life. “Hospice and palliative care are about living as fully and as well as possible through the end of human life,” Dr. Byock said. Rather than signifying the end of healthcare options, palliative care provides comfort, dignity, and even joy for individuals facing life-limiting conditions. Dr. Byock shared that families often express relief and gratitude after beginning hospice care, lamenting that they hadn’t learned about it sooner. These experiences highlight a common issue: Hospice care is often introduced too late, preventing families and patients from reaping its full benefits. 

Dallas’ Analog Informatics emerges from stealth to modernize patient engagement in over 150 languages Dallas Innovates, Dallas, TX; by Lance Murray; 12/4/24 AIC aims to "bridge the communication gap" between healthcare providers and patients worldwide by leveraging secure AI and modern communication tools. CEO Philip Lieberman created the platform based on his experiences in caring for his hospitalized mother-in-law during the COVID pandemic. ... Shocked that he knew “more about his Amazon packages” than the state of his loved one, Lieberman vowed to use the experience and resources he’d gained from the previous multinational companies he created “to bring compassionate yet automated continuous communication to every patient and their families.” ... AIC aims to "bridge the communication gap" between healthcare providers and patients worldwide by leveraging secure AI and modern communication tools.  ... AIC said its platform “bridges the communication gap” between healthcare providers and patients, offering continuous automated logistical support in more than 150 languages. 

[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.

Key differences between palliative and hospice care in California Psychology Today; by Bob Uslander, MD; 12/3/24 ... Key Difference Between Palliative and Hospice Care in California: Whether you’re looking for support early in an illness or need end-of-life care, Californians have resources available to help. California also has some unique programs and resources, such as palliative care programs for people covered by Medi-Cal, California’s Medicaid program. Additionally, California has strict laws to protect patients’ rights, ensuring that people are fully informed about your care options and can make choices that align with your personal values and cultural beliefs. Below are some of the key differences highlighted to help you make the best choice possible for you and your family when the time comes. [Click on the title's link for more information.]Editor's note: Through recent years, too many hospice agencies have eliminated references to end-of-life care, a life-expectancy of six months or less, and references to dying, death, or grief. Various fraud and abuse cases have described that persons/caregivers did not even realize they had signed up for "hospice" care. Ethically, this is untenable. Key differences between palliative and hospice care--with applications to the person--are significant.

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?

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.] 

Understanding deep disadvantage at the end of life: A nationwide analysis of unclaimed deaths Social Science and Medicine; by Jennifer Bridte DrPH, Frank Heiland, PhD, and Deborah Balk PhD; 11/25/24 This is the first systematic examination of unclaimed deaths at the county level and offers a novel way to understand marginalized populations, such as the unhoused and others living in extreme social or economic deprivation. Unclaimed death rates may also provide an objective measure of social support that can be measured over time. ... This is of public health importance because unclaimed death can be seen as a negative health outcome that may be the result of cumulative disadvantage over the life course. ... Highlights:

Palliative care bypasses Black heart disease patients The St. Louis American; by Alvin A. Reid; 11/30/24 A study by Saint Louis University researchers paints a grim picture for many heart failure patients in America – and the outlook is worse for African Americans. The study, published in the Journal of the American Heart Association, found that only one in eight patients with heart failure nationwide receive palliative care consultations within five years of diagnosis. Alarmingly, Black people were 15% less likely to receive palliative care compared to white patients with similar heart health illness. Other recent respective studies illustrate the higher risk and mortality rates for cardiovascular disease in the Black population – further demonstrating that the missing palliative care options have a greater negative impact on African American health. New statistics from a medical team at EHproject show African American women are at a greater risk for cardiovascular disease than their white counterparts. It found that 47.3% of Black women have heart disease. If they do not have it currently, they are 2.4 times more likely to develop heart disease. ... A March 2023 study published in JAMA Cardiology showed that Black men remain at the highest risk of dying from cardiovascular disease. ...