Literature Review

[UK] 'Dementia has got two faces': grief as an experience of holding on and letting go for people living with primary progressive aphasia and posterior cortical atrophyAging and Mental Health; Claire Waddington, Henry Clements, Sebastian Crutch, Martina Davis, Jonathan Glenister, Emma Harding, Erin Hope Thompson, Jill Walton, Joshua Stott; 8/25Research on grief in people with primary progressive aphasia (PPA) and posterior cortical atrophy (PCA), is limited, despite the unique challenges these individuals face due to lack of understanding of their condition, younger age at onset and atypical symptom profile. The current study explores the losses people living with PPA or PCA experience and what helps to navigate these losses. The impact and navigation of loss is reflected across five interconnecting themes: what I have lost, am losing and will lose, shared and unique sense of loss, balance between what is lost and what remains, changes in relationships and what helps in navigating loss. These findings will be used alongside existing grief theory and interventional frameworks to develop a psychosocial intervention for people living with dementia.

Opportunities and barriers to artificial intelligence adoption in palliative/hospice care for underrepresented groups-A technology acceptance model–based reviewJournal of Hospice and Palliative Nursing; by Xu, Tuzhen; Rose, Gloria M.; 8/25Underrepresented groups (URGs) in the United States, including African Americans, Latino/Hispanic Americans, Asian Pacific Islanders, and Native Americans, face significant barriers to accessing hospice and palliative care. Factors such as language barriers, cultural perceptions, and mistrust in healthcare systems contribute to the underutilization of these services. Recent advancements in artificial intelligence (AI) offer potential solutions to these challenges by enhancing cultural sensitivity, improving communication, and personalizing care. However, barriers such as limited generalizability, biases in data, and challenges in infrastructure were noted, hindering the full adoption of AI in hospice settings.

Social relationships and end-of-life quality among older adults in the United States: The impacts of marital, kinship, and network ties The Journals of Gerontology; by Kafayat Mahmoud, Deborah Carr; 7/25We examine marital status differences in recent decedents’ end-of-life care and gender differences therein, and the role of other social ties (children, siblings, network members) in influencing the quality of end-of-life care. Divorced decedents fared poorly on multiple outcomes, being less likely than married or widowed persons to receive excellent care and to have personal care needs met. Divorced and widowed decedents were less likely to receive respectful treatment relative to married decedents. We found no significant gender differences in these patterns. Persons with more siblings and network members had superior pain management. Hospital patient advocates could also aid those who lack close kin at the end of life.

Do not resuscitate (DNR) emergency medical services (EMS) protocol variation in the United StatesThe American Journal of Emergency Medicine; by Amelia M Breyre, E Jane Merkle-Scotland, David H Yang, Kenneth Hanson, Sameer Jagani, Abe Tolkoff, Satheesh Gunaga; 7/25Do Not Resuscitate (DNR) orders are essential for ensuring that critically ill patients receive care from Emergency Medical Service (EMS) aligned with their preferences. However, significant variations exist in EMS protocols regarding acceptable DNR documentation leading to discordant care, moral distress, and ethical dilemmas. Although most EMS protocols have dedicated DNR protocols, this is not universal and there is significant variability in types of documentation recognized as valid. Documentation that is concise, portable, and designed for EMS use, such as the POLST is preferred. Assistant Editor's note: It is this variability in protocols that personally scares many of us who work in the EOL field. It is not uncommon to hear a hospice/palliative worker joke that they want a "DNR tatoo on their chest"! Perhaps it would be easier (and less painful) to continue to promote POLST, or something similar, in each of our respective workplaces.

350 health groups urge Congress to extend Medicare telehealth MedCityNews; by Marissa Plescia; 8/14/25 A group of 350 organizations, including the American Academy of Hospice and Palliative Medicine, are urging Congress to make Medicare telehealth flexibilities introduced during the COVID-19 pandemic permanent, or at least extend them for two years. In a letter to congressional leaders, the organizations emphasize the importance of telehealth for Medicare beneficiaries, particularly those with chronic conditions or in rural areas, and highlight the potential impact on health care access and infrastructure. Guest Editor’s Note, Judi Lund Person: Unless there is Congressional action after the August recess to extend the hospice face-to-face requirement through telehealth, that option will conclude on September 30, 2025.

Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidencePalliative Medicine; by Oonjee Oh, Connie M Ulrich, Lauren Massimo, George Demiris; 7/25Despite the increasing prevalence of dementia, persons with dementia often receive suboptimal care near the end of life. Dementia caregivers experience intrapersonal, interpersonal, emotional, logistical, and physical challenges in ensuring quality end-of-life support for their loved one (e.g. limited understanding of end-stage dementia, gatekeeping providers, and family conflicts). The unique needs of caregivers caring for a seriously ill family member with dementia are not being fully addressed by the current available services and policies.

UnitedHealth Group’s acquisition of Amedisys closesHospice News; by Jim Parker; 8/14/25On the heels of an agreement with the U.S. Department of Justice, UnitedHealth Group has closed its acquisition of the home health and hospice provider Amedisys. Amedisys announced the news in a U.S. Securities and Exchange Commission (SEC) filing on Thursday. The UnitedHealth Group subsidiary Optum, in June 2023 inked its agreement to acquire Amedisys in an all-cash transaction of $101 per share, or about $3.3 billion. Amedisys on Thursday also stopped trading on the Nasdaq.

I choose a lazy person to do a hard job, because a lazy person will find an easy way to do it. ~ Bill Gates

Late attorney leaves lasting legacy to St. Luke’s hospice Times News - tnonline.com; Press Release; 8/9/25 A recent gift to support hospice programs at St. Luke's deepens the impact of Justin K. McCarthy, Esq. ... Among his greatest accomplishmnets is his support of programs offered through St. Luke's University Health Network [in Pennsylvania and New Jersey]. ... For many years, McCarthy, who died in August 2023 at the age of 95, served on the board of trustees for the Network's Visiting Nurses Association and was an early supporter of the hospice program that evolved into an integral component of VNA services. In addition to sharing his time, talent and energy, he was also an extremely generous donor who contributed more than $2 million in support of St. Luke's.  

She wanted her dad to give her away at her wedding. A Niagara hospice made it happen NiagaraThisWeek.com - Grimsby Lincoln News; by Mark Newman; 8/10/25 Ron Oliver got to see his daughter get married. When the 67-year-old Grimsby resident moved into McNally House Hospice for end-of-life care on Wednesday, his daughter Alissa mentioned to hospice staff she wanted her father to see her get married and to give her away as part of the matrimonial ceremony before he dies. McNally House staff went to work, and 48 hours later Alissa was walking along an outdoor patio at the hospice with her father behind her in a wheelchair holding her hand.

Over half of older employees plan to work 'indefinitely' and never retire Money Magazine; by Amd Hardy; 8/11/25 Many retirement-age Americans are planning to continue working — forever. Some 51% of employed Americans 65 or older say they expect to work “indefinitely,” according to a recent report from Asset Preservation, a financial advisory firm. Meanwhile, about 6 in 10 respondents say they plan to work “at least five more years” before retiring, putting the earliest age they would consider retiring at 70. ... Why older Americans are working so late in life seems to be a fairly even split between necessity and choice. About one half works to cover basic living expenses, like food, health care and housing, while the other half chooses to work to stay mentally and physically active. Guest Editor’s Note, Mark Cohen: As many hospices are still trying to rebuild the ranks of their volunteers to pre-pandemic levels, this report indicates the challenges may continue to grow. It’s worth noting that half of the Boomers who say they will continue working past normal retirement age would do so out of choice and not economic necessity. That opens the door to demonstrating the value and rewards of volunteer service. And for those volunteer managers younger than Boomers, it’s important to keep in mind that, more than any other generation, Boomers define themselves and measure their success in life in large part by their work.