Literature Review

When the right end-of-life care is hardest to access MedPageToday's KevinMD.com; by Denise Mohess, MD; 6/17/26 The cost of health care in America is extraordinarily high, too often funding the wrong type of care. As a geriatric medicine and palliative care physician, I sit with patients and families making end-of-life decisions, weighing life-prolonging measures, optimizing quality of life, defining what matters most to them. Recently, a 100-year-old man with severe dementia, limited mobility, hearing impairment, requiring assistance for his daily needs, was admitted to the hospital with worsening weakness. ... At a time when care should have eased suffering, the system instead added to it, as the care that best honored his wishes was the hardest to access.

The family caregiver experience in palliative care pathways: a multidimensional framework BMC Health Services Research; by Marzia Cettina Severino, Costanza Galli and Sabina De Rosis; 6/16/26 Family caregivers play an essential role across the life course of people, especially in delicate moments as the end-of-life, playing a central role in supporting and caring for terminal patients. Exploring the experience of family caregivers along this pathway is crucial to ensure a respectful, person-centered and high-quality experience with healthcare services, not only for patients but also for their caregivers. This study aimed to develop and validate collaboratively a multidimensional framework to explore the global experience of family caregivers across the palliative care pathways, through a multi-step participatory process involving professionals and caregivers.

The pain of caring for a parent who abused youDNYUZ; 6/16/26 It started in January 2024, with a call from her father’s eye doctor. Did Carole know that Andre was still driving, even though his vision was so poor? Even though it was illegal to drive with eyesight so bad? Well, no, she didn’t; she made a point not to know this sort of thing about her father. Also, she didn’t really care. Still, Carole drove to his house, on the outskirts of Santa Rosa, Calif., down long dirt roads surrounded by vineyards. ... And there was her father, 93, standing by the front door, on that filthy rug, next to the maroon-colored walker that he hated to use. Looking small, looking weathered. ... 

The missing middle in healthcare—and why it matters | part one Teleios Collaborative Network (TCN); podcast hosted by Chris Comeaux with Bridget Sumser and Sonya Dolan; 6/20/26 What happens between a life-changing diagnosis and hospice care?  In Part One of this thought-provoking conversation, Chris Comeaux welcomes Mettle Health co-founder Sonya Dolan and Director of Counseling & Programs Bridget Sumser to explore what they call healthcare’s “missing middle.” ... Together, they unpack how Mettle Health was created to provide a different kind of support: one centered on accompaniment rather than treatment, resilience rather than answers, and human connection rather than healthcare transactions.

Humanistically Universalizing Grief (HUG): advisory guidelines for national hospice bereavement programs standards within the United States OMEGA - Journal of Death and Dying; by Jared R. Garcia1, Lynn M. Raine, Larry Ortiz, and Mary Akstin; 6/12/26... This quantitative study gathered data through online surveys from bereavement coordinators in California. By aligning these findings with standards from the Center for Medicare and Medicaid Services and the National Hospice and Palliative Care Organization standards, the Humanistically Universalizing Grief (HUG) model was developed, which provides core principles and advisory guidelines for hospice bereavement care. The HUG model offers a structured yet adaptable framework to improve program consistency, accessibility, and equity, ensuring bereavement care is comprehensive, sustainable, and responsive to the diverse needs of grieving individuals.

The missing middle in healthcare—and why it matters | part one Teleios Collaborative Network (TCN); podcast hosted by Chris Comeaux with Bridget Sumser and Sonya Dolan; 6/20/26 What happens between a life-changing diagnosis and hospice care?  In Part One of this thought-provoking conversation, Chris Comeaux welcomes Mettle Health co-founder Sonya Dolan and Director of Counseling & Programs Bridget Sumser to explore what they call healthcare’s “missing middle.” ... Together, they unpack how Mettle Health was created to provide a different kind of support: one centered on accompaniment rather than treatment, resilience rather than answers, and human connection rather than healthcare transactions.

Father with terminal illness fights to attend MHSAA championship to see son play Northeaset Mississippi Daily Journal, Tupelo, MS; by Caleb McCluskey; 6/6/26 From the time Carter Barefoot, 17, could walk, he was playing baseball, especially with his father, Alan Barefoot, who played Division I baseball in college. But illness has limited his father’s ability to enjoy the game they have shared throughout their lives. ... “He never missed a game,” Carter said. After doctors diagnosed Alan, 55, with terminal cancer and admitted him to Sanctuary Hospice, he physically could not be there for most of Carter’s junior-year season. Sanctuary made it happen, arranging for Alan to attend the playoffs in Pearl, where he watched his son’s Mooreville team become Class 4A state champion. It meant the world to Carter to see his dad there. 

We couldn't afford to pay for my mom's dementia assisted living anymore. She moved into a tiny house next door to me. Business Insider; as told to Noah Sheidlower; 5/31/26 This as-told-to essay is based on a conversation with Lori Bufka, 64, who is caring for her mother with dementia in Arizona. Assisted living became too expensive for her mother, so Bufka moved her into a trailer next to their home, where her mother would have enough space and safety. This interview has been edited for length and clarity. Editor's Note: From this essay, "She went into hospice care, and we hired someone to come for a few hours a week. It was supposed to be $37 for two hours, but when I got the bill, they tacked on mileage, so it became $92. We figured it wasn't worth it, so now hospice volunteers visit every now and then, and hospice covers medically necessary appointments. ..."

Why pre-admission is hospice’s next operational advantage Hospice News; by Jack Silverstein; 5/29/26 When Dr. Darius Joshi named his San Jose, California-based hospice Redwood Hospice, the name had more significance than simply proximity to Redwood National and State Parks. [Rich metaphor of redwood trees for quality hospice care as related to referrals and admissions ...] ... Inside the rise of the pre-admission platform: three areas of improvement:

Sovereign Hospice releases guidance on home setup for end-of-life care NEWSnet, Aubrey, TX; by Sovreign Hospice; 5/31/26 Sovereign Hospice, a Dallas-Fort Worth-based hospice and palliative care provider, has released practical guidance for families preparing to receive end-of-life care at home. ... The guidance covers room selection, durable medical equipment placement, medication organization, caregiver strategies, and a clear explanation of the services hospice offers in a home setting. It is directed at families across the Dallas-Fort Worth Metroplex who are beginning to consider hospice at home service for a loved one with a life-limiting illness.

Early palliative integration for heart failure Medscape; by Karel De Pourcq, PhD; 5/27/26 ... Chronic conditions such as heart failure often bring relentless symptoms, repeated hospital admissions, and deep emotional and social effects for patients and their families. Bringing a palliative perspective into care widens the focus beyond disease-directed treatments to include ongoing symptom relief, emotional support, and help for overburdened caregivers. It also promotes early, shared planning about treatment intensity — deciding when worsening episodes can be managed at home vs when hospitalization is needed — and clarifying care goals as the illness progresses.

Bridging faith and palliative care: Catholic clergy and community engagement in the United States American Journal of Hospice and Palliative Care; by Clotilde Dudley-Smith and Brian Stiltner; 5/27/26 ... Spiritual care delivered by community clergy when disconnected from contemporary palliative care principles may, in some cases, unintentionally contribute to delayed hospice referral and increased use of aggressive, nonbeneficial treatments near the end of life. Drawing on interdisciplinary literature in palliative care, chaplaincy, and sociology of religion, this paper examines structural, educational, and cultural barriers that limit collaboration between palliative care teams and Catholic clergy in the United States.

New! Pediatric e-Journal Issue #83National Alliance for Care at Home press release; 5/20/26The focus of the 83rd issue and the one that immediately preceded it is on topics that relate to trauma and trauma-informed care. This issue specifically addresses trauma and trauma-informed care as they involve providers and care teams.