Literature Review

Do not wait for someone else to come and speak for you. It’s you who can change the world. ~ Malala YousafzaiCelebrating Women's History Month

50 years ago, Karen Quinlan’s coma sparked the movement for patients’ rights near the end of life The Conversation; by Kalpana Jain; 3/23/26 March 31, 2026, marks 50 years since a landmark decision that shapes American patients’ rights every day: the New Jersey Supreme Court ruling in the case of Karen Ann Quinlan, who had suffered an irreversible coma. Quinlan’s case established for the first time that decisions near the end of life should be made by patients and families, not by doctors and hospitals alone. As a bioethicist, I have taught and written extensively about the profound impact the Quinlan case has had on law, bioethics and the pursuit of death with dignity. A decade after the Quinlan case, New Jersey created a Bioethics Commission to study advancing health care technology in light of the decision’s principles. The commission’s proposed legislation establishing advance directives was enacted on July 11, 1991. I was privileged to lead this project, as staff to the commission. Today, all 50 states have advance directive laws that allow competent adults to plan ahead and put their wishes for end-of-life care in writing.

Official statement from NPHI on recent hospice fraud media coverage and ongoing federal enforcement efforts National Partnership for Healthcare and Hospice Innovation (NPHI); Press Release; 3/20/26 ... NPHI is actively engaged with federal leaders to advance targeted solutions that root out bad actors while safeguarding the integrity of the hospice benefit. It is important to underscore that these issues are not representative of the majority of hospice providers, who are focused every day on delivering high-quality, compassionate care to patients and families. Official Statement by Tom Koutsoumpas, Founder & CEO of NPHI: "... It’s important to be clear — this is not a failure of the hospice model of care. It is the result of a subset of providers exploiting the healthcare system, and that must stop. ..."Carole Fisher, President of NPHI, added: "“At its core, hospice care is about trust — trust from patients and families during some of the most vulnerable moments in their lives. That’s why NPHI is committed to supporting decisive action to address bad actors, while continuing to uphold and protect the high standards that define this field.”

The secure leader: How attachment styles shape leadership | part one Teleios Collaborative Network (TCN); podcast hosted by Chris Comeaux with Jamie Goff; 3/18/26 What if the greatest barrier to effective leadership isn’t a lack of skills—but a lack of self-awareness?  What if the real challenge isn’t learning more tactics, but understanding the internal stories, beliefs, and patterns that shape how you lead every day? In Part One of this powerful conversation, Chris Comeaux sits down with Dr. Jamie Goff, executive coach and author of The Secure Leader, ... Dr. Goff challenges the traditional focus on technical leadership skills and instead shines a light on the internal mindset shifts that truly transform leaders.

VA Pittsburgh chaplains: Providing hope, healing and spiritual support for Veterans U.S. Department of Veterans Affairs; by Jordan Harris; 3/9/26 From suicide prevention to end-of-life care, VA Pittsburgh Healthcare System (VAPHS) chaplains deliver compassionate, holistic support that strengthens the well-being of Veterans and staff. Chaplains provide more than spiritual guidance -- they offer hope, comfort and connection when Veterans need it most. Whether it’s supporting someone through a mental health crisis, walking alongside families during end-of-life care, or simply listening in moments of uncertainty, chaplains are a steady presence. Their work helps Veterans find meaning, resilience and peace as part of their healing journey.

First renovated rooms completed in Columbus Hospice Center Refresh Capital Campaign, over $635K raised The Republic; by Hallie Gallinat; 3/21/26 The Hospice Center in Columbus, as part of the ongoing Hospice Refresh Campaign, has completed its first renovated patient room and family room. The campaign, launched to modernize the Hospice Center after more than 20 years of service to the community, has now raised over $635,000 toward its $2 million goal. ...  Donors were invited to a private open house on March 12 to celebrate the completion of the first renovated spaces.

Regional pediatric Education and Assistance Collaborative for Hospice nurses (REACH): A tele-educational intervention Journal of Hospice and Palliative Nursing; by Taylor Aglio, Alexa Bobelis, Ashley Autrey, Tracy Hills, Alexandra Superdock, Arshia Madni, Kelly Bien, Nidhi Mali, Erica C Kaye; 3/20/26... To address [the gaps between hospice care for seriously ill children and their families and adult-focused hospice paradigms], a multidisciplinary team comprising physicians, nurses, psychosocial clinicians, community members, and bereaved parents was convened to develop the Regional Pediatric Education and Assistance Collaborative for Hospice Nurses (REACH) initiative. Using a community-based participatory research approach, a stakeholder-driven tele-educational intervention was designed, refined, and implemented as a pilot for hospice nurses across Tennessee. Pilot data showed this hub-and-spoke model to be feasible, acceptable, and impactful, increasing hospice nurses' knowledge and comfort with provision of pediatric care in the community.

Haven Hospice simulations help caregivers understand dementia Levy Citizen, Chiefland, FL; by Antoniette Meyer; 3/19/26 A program offered by Haven Hospice is helping caregivers, medical professionals and community members better understand what daily life can be like for someone living with dementia. ... Through Haven’s Dementia Care Program, participants can take part in hands-on simulations designed to replicate some of the sensory and cognitive challenges people with dementia experience. During the exercises, attendees may wear specialized goggles or gloves, listen to music or attempt tasks that simulate symptoms such as vision loss, hearing impairment, reduced motor function and changes in perception. The activities are designed to demonstrate how dementia can affect memory, communication, emotions and everyday functioning.

Hospice organizations call for Medicare provider enrollment moratorium in California Hospice News; by Jim Parker; 3/20/26 A coalition of hospice and home health industry stakeholders are calling for a statewide moratorium in California on provider enrollments due to widespread Medicare fraud. A key area of focus is the greater Los Angeles County area. The group of providers and associations has written to U.S. Centers for Medicare & Medicaid Services (CMS) Administrator Dr. Mehmet Oz saying that rampant fraud in the state requires federal intervention. The signatories on the letter included the Save Home Health Coalition, California Hospice and Palliative Care Association (CHAPCA) and Texas Association for Home Care and Hospice (TAHCH).

* CEO, Hildegard House, nonprofit, Louisville, KY

Alliance submits comment letter on the Department of Education’s notice of proposed rulemaking, ‘Reimagining and Improving Student Education’ (RISE) National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 3/3/26 The National Alliance for Care at Home (the Alliance) has submitted a response to The Department of Education’s proposed rule, titled Reimagining and Improving Student Education (RISE).  While the Alliance appreciates the Department’s aim of promoting fiscally responsible spending, the comment letter expresses concern that the proposed rule’s narrow definition of professional degree, and the resulting exclusion of nursing, physical therapy, physician assistant, occupational therapy, and social work advanced degree programs, would have a unintended consequence for the healthcare workforce and the millions of Americans who depend on care delivered in the home.

Metro East hospice aide caring for her own son with rare terminal disorder First Alert 4, Collinsville, IL; by Jeffrey Bullard; 3/13/26 A Collinsville mother has worked as a hospice care aide for more than 13 years, and soon she will be placing her son in that care. “She is the best,” said Brenda McGarvey of Amber Mers, her coworker at Unity Hospice Care. “If you didn’t know Amber personally, you would never know what she is going through,” explained Beverly Lee. Amber is facing a mother’s worst nightmare. Her son Emil is dying.