Literature Review

40 years after Karen Ann Quinlan’s death, NJ right-to-die case still stirs strong emotions New Jersy Herald; by William Westhoven; 6/4/25 ... Today, Americans are free to declare those rights [about dying] in the form of advance directives such as a living will. For that, we have one New Jersey family to thank: the parents and siblings of Karen Ann Quinlan, whose faith carried them through the arduous process of turning their tragedy into a legal victory that changed the way Americans approach the end of life. They were aided by a collection of attorneys and judges on both sides of the life-or-death case who chose to work "as adversaries but not enemies." Karen, then 21, fell into an irreversible coma after attending a party in Sussex County on April 15, 1975. She died 40 years ago, on June 11, 1985, in a Morris County nursing home.Editor's note: I remember this. Do you? In the midst of today's MAiD legislation, lobbying, and often highly inflammatory stances, I'm struck by this article's description, "They were aided by a collection of attorneys and judges on both sides of the life-or-death case who chose to work "as adversaries but not enemies." Yes, strong emotions and beliefs still drive both sides. Yes, we still choose how to work together. 

Provider MiraSol Health launches new Behavioral Health Program Hospice News; by Jim Parker; 6/3/25 MiraSol Health has launched a new behavioral health program designed to amplify emotional and psychological support for its hospice and palliative care patients. Branded as Rays of Hope Behavioral Health, the program offers individual and group therapy sessions, both in person and via a secure telehealth platform. Through Rays of Hope, MiraSol’s licensed therapists will help address anticipatory grief, caregiver stress, loss and other struggles that patients and families face during a time of chronic, serious or terminal illness.

Hawai'i Pacific University alumni join forces to build a pioneering palliative care team for student excellence Special to The 'Ohana - HPU's Daily News, Honolulu, HI; 6/3/25 A group of HPU alumni from the nursing, social work, public health and business administration programs ... will be working towards steering a newly established palliative care team at HPU to assist nursing students, social workers and public health students to play an important role in understanding palliative care, hospice and communication with family and survivors. The team will play a role in setting up clinical placements in the community at St. Francis Palliative Care Units and Hospice, to give our nursing students invaluable hands-on experience in providing compassionate care for patients with serious and life-limiting illnesses. HPU Assistant Professor Joy Bliss, Ph.D., will also be designing simulations for “effective listening and communication skills,” to enhance student’s performance and skills in grief and this specialty of nursing. ... This initiative is not only an opportunity to strengthen the clinical training of nursing students, but also an essential step forward in improving the availability and quality of palliative care in Hawaiʻi. 

10 Signs death is near for dementia patients The Healthy; by Dr. Patricia Varacollo, DO; 6/2/25 For families and caregivers, recognizing the final stages of dementia can be difficult, but understanding the signs can help ensure comfort and dignity in a loved one's last days. Dr. Koncilja highlights these key indicators that may suggest the end of life is near:

Hospices facing a US caregiving ‘crisis’ Hospice News; by Holly Vossel; 6/2/25 Family caregivers in the United States are being challenged by a swelling aging population inneed of greater support and stronger policy infrastructures. Much room for improvement exists at both state and federal levels when it comes to recognizing the important roles that family caregivers play, according to Steven Lee, co-founder and CEO of ianacare, a Boston-based patient and caregiver resource company. More innovative care models and disease-specific reimbursement options have widened pathways for hospice providers to improve family caregiver support, Lee said in a recent Hospice News Elevate podcast. But these fall short of addressing the diverse scope of practical, emotional and financial needs, he stated. Editor's note: This article has an excellent map of US states with caregiver categories for "Well-Supported," "Safe for Now," "High Risk," and "Critical" (courtesy of Otsuka America Pharmaceutical). Additionally, our sponsor Hospice Analytics provides the National Hospice Locator, for caregivers/families to find hospices that serve in each US county, and sorted by their quality scores. And, our sponsor Composing Life equips hospice organizations with caregiver/family video libraries that span the continuum of serious illness, hospice, and grief care. 

[United Kingdom] Hospice cuts 19 jobs to save £1.7m amid ‘worst financial crisis’ in its history LSE - The London School of Economics and Political Science; by Emily Moss; 5/29/25 A Yorkshire-based hospice charity has cut 19 jobs in the hope of reducing its annual costs by £1.7m as it faces what it has previously described as “the worst financial crisis” in its almost 40-year history. The Kirkwood, which provides palliative and end-of-life care for people living in and around Kirklees, West Yorkshire, said that an additional nine employees had agreed to reduce their hours or adjust their roles to enable the hospice to save money. The hospice opened its redundancy consultation in February. The initial plans placed 33 roles at risk of redundancy. At the time, the Kirkwood said it was facing the “worst financial crisis” in its history, citing a “perfect storm” of an increasing demand for hospice services versus rises in the prices of essential equipment, energy and food.Editor's note: This represents just one of many ongoing reports of financial crises, extreme fund-raising, closures and staff layoffs throughout the UK's hospices. Themes and patterns pair with trends we're seeing throughout the US.

US trends from 1999 to 2020: Mortality and location of deaths in ischemic stroke Neurology Advisor; by Meghna Rao; 6/2/25 Patterns of ischemic stroke mortality have varied over the last 2 decades in the United States, according to study findings published in PLOS One. Stroke is one of the leading causes of mortality in the US. Researchers studied the trends in location of ischemic stroke deaths to improve end-of-life care and address health care inequities.The Centers for Disease Control and Prevention’s Wide-Ranging Online Data for Epidemiologic Research (CDC WONDER) database was used to examine trends in ischemic stroke mortality between 1999 and 2020. 

Hard conversations, celebrations accompany AANHPI Heritage Month Public News Service; by Roz Brown and Suzanne Potter; 5/30/25 Asian Americans, Native Hawaiian and Pacific Islanders are a rapidly growing population in California and across the nation - but as they age, research indicates they're less likely to use hospice care or be familiar with end-of-life options. Nationwide, the group makes up about 6% of the population - and 15% in California - but like many minorities, they face greater health-care disparities. Ben de Guzman, director of the Office on Asian and Pacific Islander Affairs in the Washington, D.C., mayor's office and the son of Filipino immigrants, said cultural beliefs can hinder conversations about death and dying, and language also is a barrier.

Remove barriers that restrict hospice care, Alliance offers in new report McKnights Home Care; by Adam Healy; 5/28/25 Hospice providers can boost quality and patient satisfaction with a focus on transparent, culturally sensitive communication with clients, according to a new report by the National Alliance for Care at Home. ... For the report, the Alliance surveyed 2,000 adults who either recently experienced the death of a loved one or have been involved in healthcare decisionmaking for a person with a serious illness. Respondents included individuals of a variety of ages, income levels, ethnicities and educational backgrounds. ... . For many seniors, one of the largest barriers to care is ineffective communication, the survey found. Language barriers are a significant hurdle for non-English speaking older adults, particularly those who are first generation immigrants, it noted. Many seniors are also less comfortable with technology-based communication than younger people, and prefer face-to-face conversation over text messages.

National Alliance for Care at Home publishes CONNECT to Care Report National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 5/27/25 The National Alliance for Care at Home (the Alliance) published the results of new research conducted by Transcend Strategy Group exploring perceptions of hospice care among underserved communities. This research compiles findings from a series of surveys of 2,000 people and explores perceptions of hospice care among Black, Hispanic, Asian American, LGBTQ+, and rural communities. Using the CONNECT acronym – Communication, Outcomes, Network, Nurture, Engagement, Collaboration, and Transparency – the report aims to help providers support equitable, inclusive, and comprehensive access to care and is part of the Alliance’s ongoing commitment to increasing access to hospice and home care through knowledge sharing, data collection, and collaborative discussion.  Along with key research findings, CONNECT to Care offers recommendations for hospice providers to help increase understanding of hospice care and help overcome barriers to access.  

Johnson champions Eddie's Law to bring dignity to end-of-life-care in Illinois Public, Springfield, IL; News Release; 5/22/25 After an incarcerated man named Eddie Thomas died alone in a prison infirmary without receiving any end-of-life care, State Senator Adriane Johnson is championing legislation to bring dignity, compassion, and transparency to hospice and palliative care services in Illinois correctional facilities. "This bill is about basic human dignity," said Johnson (D-Buffalo Grove). "No one should die in pain, in isolation or without the comfort of care - no matter who they are or where they live. House Bill 2397 brings transparency to a system that too often leaves people to suffer silently." ... House Bill 2397 would require the Illinois Department of Corrections to prepare and publish an annual report detailing its hospice and palliative care programs. The bill aims to provide lawmakers with data that can guide future policy decisions on compassionate and medically appropriate end-of-life care for people incarcerated in Illinois. 

Dover Hospice celebrates ribbon-cutting ceremony  The Edwardsville Intelligencer, Glen Carbon, IL; by Karla Vasquesz Mejia; 5/25/25Dover Hospice in Glen Carbon had its ribbon-cutting ceremony on the afternoon of May 19. Employees of the new center at 2 Ginger Creek Village Drive in Glen Carbon were accompanied by the EdGlen Chamber of Commerce and family members of the employees. Executive Director Page Belongy said Dover Hospice, began in St. Louis two years ago after branching out from Cedarhurst Assisted Living.