Literature Review

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.

A healthcare system’s moral bankruptcy goes viral MedCity News; by Neal K. Shah; 12/5/24 Brian Thompson's murder was chilling, but the social media response of this tragedy was equally shocking, if eye-opening. It shows a massive collapse of public trust in our healthcare system, a system so broken that it bankrupts families, denies life-saving care, and treats death as an acceptable cost of doing business. When UnitedHealthcare CEO Brian Thompson was gunned down outside a Manhattan hotel ..., something chilling happened: thousands of Americans responded not with horror, but with dark jokes and scathing comments about the health insurance industry. People shared stories of being denied coverage by the company and drew parallels comparing the CEO’s death to the ways they’ve been mistreated by America’s healthcare system. ... The tragedy of Thompson’s death is compounded by a cruel irony: He was rushed to Mount Sinai  — a healthcare system whose hospitals UnitedHealth removed from its network only a few months ago, leaving thousands of patients scrambling. Even in death, he couldn’t escape the byzantine system his company helped create.

Dr. James O’Connell on caring for the homeless in Boston Simmons University, Boston, MA; by Simmons University; 12/6/24 “A mile from here, people are experiencing the same health disparities as they have in Third World countries,” said Dr. James O’Connell, founder and president of Boston Health Care for the Homeless Program (BHCHP) and Assistant Professor of Medicine at Harvard Medical School. ... In 1985, O’Connell was the founding physician of a program to support the people experiencing homelessness in Boston. The program received funding through a four-year grant from the Robert Wood Johnson Foundation and the Pew Charitable Trust. ... [Story about getting a homeless man into hospice care at a nursing home.] When [O'Connell] questioned him about hospice, Santo shared his perspective. “He told me, ‘I appreciate all you’ve done, but I didn’t know anyone there. I don’t want to die there. I want to die with my friends.’” After that, they arranged end of life care for Santo at the shelter. “I had never thought to ask him what he wanted,” said O’Connell. “I have since learned that I have to listen to what people want.” 

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.

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.

Top News Stories of the Month Nov 2024 - TCN Podcast Teleios Collaborative Network (TCN); podcast by Chris Comeaux with Mark Cohen; 12/4/24 What if the future of Hospice and Palliative Care depends on understanding the intricacies of industry integration and regulation?  Join us for an insightful journey through November's most compelling stories that have captured the attention of Hospice and Palliative Care Today's readership. Our conversation reveals the significant impact of national events, from elections to regulatory changes, on shaping news cycles and industry priorities.  Also, rising workforce demands and political changes, such as immigration restrictions, paint a concerning picture for the future labor pool in Hospice Care. We provide a comprehensive analysis of the month's key themes that may have been missed, like tackling issues from CMS payment cuts to the Justice Department's stance on UnitedHealthcare Group's acquisition of Amedisys. This episode is a must-listen for those seeking a deeper understanding of the critical yet often overlooked issues in Hospice and Palliative Care today, and Mark delivers another excellent masterclass on creating compelling headlines. 

Hospice of the Valley and CLS bridge the generation gap Arcadia News, Phoenix, AZ; by Cliff Summerhill; 12/1/24 Hospice of the Valley (HOV) and Christ Lutheran School (CLS) are entering the second year of a partnership that connects students with individuals at the Dementia Care and Education Campus. As part of HOV’s Adult Day Club, fifth-grade students visit individuals living with dementia to bridge intergenerational divides and spread enrichment, support, and joy that lasts long after the day’s activities have ended. ... Students partake in various meaningful activities with club members, including painting, coloring, gardening, and activities like cornhole, catch, and shuffleboard. The most important activity, however, is conversation. “Even though there is an age gap, both the Adult Day Club members and the students have the opportunity to learn from each other as they share stories and various interests,” CLS Service Learning Coordinator Mandi Schnepf said.

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.

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.

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.

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.

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.”

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.