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.

Two states lead the pack on palliative care access, many lag behind Hospice News; by Jim Parker; 12/10/24 Two states — Massachusetts and Oregon — rise above the rest when it comes to access to palliative care. This is according to the new rankings from the Center to Advance Palliative Care, America’s Readiness to Meet the Needs of People with Serious Illness Scorecard. The scorecard ranks each state’s capacity to deliver high-quality care to people facing serious illness on a five-star scale by evaluating five domains, according to Stacie Sinclair, the associate director for policy and care transformation at the Center to Advance Palliative Care (CAPC). To develop the scorecard, CAPC applied an updated methodology that considers metrics beyond those used in previous reports, which only examined the availability of palliative care in hospitals with 50 beds or more. 

What adult children should know when discussing their parents’ end-of-life care StudyFinds; by StudyFindsStaff, reviewed by Christ Melore; 12/8/24 Talking about death can be difficult for anyone at any time. For adult children who need to know their parents’ final wishes, it can be excruciating. A new survey is revealing the stark disconnect between our beliefs and actions when it comes to end-of-life planning. While an overwhelming 90% of adults recognize the importance of these critical conversations, half have yet to take the first step with their closest loved ones. ... The numbers tell a revealing story. Twenty-six percent of respondents simply keep putting off the conversation, while 23% admit they don’t know how to approach the topic. Sixteen percent are outright scared to broach the subject, creating a wall of silence around a universal human experience. ... When people do open up, the conversations prove surprisingly rich and multifaceted.

Forcura and Axxess announce palliative care software integration Bluefield Daily Telegraph, Jacksonville, FL; Business Wire; 12/9/24 Forcura, a healthcare workflow management company, announced a strategic partnership enhancement with Axxess, the leading global technology platform for healthcare at home, by expanding connectivity to Axxess’ palliative care platform. Consequently, Axxess’ palliative care client organizations now can manage the workflow associated with onboarding and coordinating care for patients through a bi-directional API integration with Forcura. Together, Forcura and Axxess can provide shared home health, hospice, home care and palliative care clients a seamless interoperable experience.

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. 

The ISNP opportunity for hospice providers  Hospice News; by Jim Parker; 12/5/24 Hospice providers can collaborate with institutional special needs Medicare Advantage plans (ISNP) to reach patients who reside in long-term care facilities. ISNPs restrict enrollment to MA eligible individuals who, for 90 days or longer, have had or are expected to need the level of services provided in a long-term care (LTC), skilled nursing facility, a LTC nursing facility, intermediate care facility for individuals with intellectual disabilities (ICF/IDD), or an inpatient psychiatric facility. The nonprofit senior services organization Empath Health, which operates several hospices, recently partnered with the MA organization American Health Plans to bring their services to ISNP-enrolled patients.

Bloom Healthcare CEO: Integrating palliative care into every decision Hospice News; by Jim Parker; 12/3/24 The house call provider Bloom Healthcare has leveraged its integrated palliative-primary care model to achieve substantial reductions in hospitalizations and health care costs. The U.S. Centers for Medicare & Medicaid Services recently recognized Bloom as a top performing High-Needs Accountable Care Organization under the agency’s Realizing Equity, Access and Community Health (ACO REACH) model. Through its ACO REACH program, Bloom reduced unplanned hospital readmissions by 25% and realized a gross cost savings rate of 24.6%. The company’s patients averaged 326.7 days at home during  2023. Bloom Healthcare cares for about 10,000 high-needs patients with a comprehensive primary care and care management model that incorporates palliative care. The company currently operates in Colorado and Texas. ... Palliative Care News sat down with Bloom CEO Dr. Thomas Lally to discuss the strategies the company used to garner these results and how palliative care factored in. [Click on the title's link to continue reading.]

[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.

[New Zealand] Palliative care podcast’s win a ‘complete surprise’ Otago Daily Times, New Zealand; by Matthew Littlewood; 12/2/24 A Dunedin carer’s attempts to bring conversations about palliative care to a wider audience has been acknowledged at the New Zealand podcasting awards. Otago Hospice care nurse Denise van Aalst told the Otago Daily Times that winning the bronze medal in the Best Interview Podcast category for her podcast Ending Life Well came as a "complete surprise". The 29-episode series was launched about two years ago, and covered subjects such as self-care, legal matters, funeral planning and whānau manaaki (families who provide care to a kaumātua at end of life). "We knew that our podcast was helpful for people. "We don’t talk about death and dying in polite society, and people are often now going in and helping to care for somebody at the end of life with little experience or knowledge, and they don’t know where to go to get that."

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?

Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study Palliative Care and Social Practice; by Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger; 11/29/24 This study seeks to address gaps in existing knowledge, especially the limited inclusion of children's perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions. ... The findings showed that the children's attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items.

Seen Health invests $22m for PACE Care Centers HomeCare, Los Angeles, CA; by Seen Health; 11/26/24 Seen Health, a health care organization focusing on aging-in-place services and culturally-focused care models, announced it has invested $22 million in funding to expand access to its culturally-focused care centers for eligible seniors. The company said [its] first center is set to open in California and will be built upon the Program of All-Inclusive Care for the Elderly (PACE) model. The PACE model aims to deliver comprehensive medical and social support for seniors with chronic conditions who are covered by Medicaid or Medicare. The care model intends to provide an alternative method of care to nursing homes by enabling seniors to stay in their homes and age in place. ... The first Seen Health center, which is set to open in Los Angeles County's San Gabriel Valley, intends to serve the local Asian and Pacific Islander community.

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. ...