Literature Review

Students provide a lifeline for dementia caregiver Lovin' Life; by Lin Sue Flood; 4/5/26 When ASU junior Emily-Jane Crawford finishes her classes and homework, she travels to Glendale to visit a very special friend. Bud Addison is 81 years old, and despite his dementia, Emily-Jane’s visits are the highlight of his week. ... This connection is the heart of RISE (Respite in Student Engagement), a unique partnership between Arizona State University and Hospice of the Valley. The program matches students interested in health care careers with families caring for loved ones with dementia.

Moral distress and occupational burnout in US physicians JAMA Network; by Michael A. Tutty, PhD, MHA, Colin P. West, MD, PhD, Liselotte N. Dyrbye, MD, MHPE, Hanhan Wang, MPS, Lindsey E. Carlasare, MBA, Christine A. Sinsky, MD, Mickey Trockel, MD, PhD, Tait D. Shanafelt, MD; 3/24/26 Question: What is the level of moral distress and the association between burnout, intent to leave (ITL), and intent to reduce work hours (ITR) among physicians and US workers? Conclusion and Relevance:  In this survey study, moral distress was common among physicians and experienced at higher rates than the general US working population. Understanding the differences between moral distress and burnout may allow organizations to more effectively implement interventions to address both concerns among clinicians. 

‘Startling’: Palliative care services often not provided for severe brain metastases Healio; by Josh Friedman; 3/3/26 Half of patients with the most severe brain metastases may not be receiving palliative care consultations. Those who do have a significantly higher likelihood of filling out advance directive documentation and getting hospice care, and they have similar OS as those who did not receive consultations. ... “We have to rephrase the word fighting,” [Rohit Singh, MD, medical oncologist and assistant profess at University of Vermont] said. “I tell my patients, you’re not giving up fighting [getting palliative care]. You’re fighting for what’s better for you. You’re fighting for your quality of life. That’s you making it better. You’re not giving up anything. You are making sure whatever time we have aligns with your goals.”Editor's Note: Powerful communication from Dr. Singh. Reframing “fighting” can serve as a catalyst for alignment—across patients, families, and care teams. Palliative care isn’t surrender; it’s a deliberate choice to prioritize what matters most.

Expert panel updating NCHPC’s Palliative Care Clinical Practice Guidelines Hospice News; by Kevin Ryan; 4/1/26 The National Coalition for Hospice and Palliative Care (NCHPC) has chosen a panel of 33 palliative care experts to develop the 5th edition of the Clinical Practice Guidelines for Quality Palliative Care. Originally created in 2004, through the National Consensus Project, the guidelines established the first national, evidence-based standards for the palliative care field. The guidelines have been updated four times since 2004 and have been endorsed by more than 90 health and professional health care worker organizations.  

Cleaning reframes end‑of‑life care for mental health The Philadelphia Tribune, Philadelphia, PA; by Lynn Akesson; 3/28/26... At its core, death cleaning is a decluttering practice: going through one’s belongings with the intention of reducing what survives us. But its appeal lies less in organization than in its promise of emotional relief. By transforming an abstract fear — leaving chaos behind — into a meaningful act of care, death cleaning reframes preparation for death as a process that can support psychological well-being in life. Editor's Note: For a related caregiving video specific to bereavement, visit "Re-Membering: Scrap 'Em, Store 'Em, or Stitch 'Em Together, by Composing Life Out of Loss (disclosure, a newsletter sponsor)

Top ten tips palliative care clinicians should know about wound care Journal of Palliative Medicine; by Nicole Dussault, Jared Morphew, Veronica Nwagwu, Brittany Gatta, Angela Richardson, Nancy Payne, E Foy White-Chu, Lidiette Wilson, Heather Dalton, Christopher E Winstead-Derlega, Katherine Ramos, Christopher A Jones; 3/30/26 ... In this article, we outline key tips for assessing and managing wounds, including understanding prognosis and goals of care, evaluating care settings, tailoring management to the underlying disease process, and addressing symptoms such as pain, odor, and psychosocial distress. A thoughtful, interdisciplinary approach is essential to reduce the physical and emotional burden wounds place on patients and caregivers.Editor's Note: As CMS implements the HOPE (Hospice Outcomes & Patient Evaluation) Tool as of October 1, 2025, skin and wound assessment becomes a visible quality marker in hospice—requiring structured documentation, ongoing reassessment, and clear alignment with patient goals. 

Lost in transmission: Changes in organ donor status can fall through cracks in the system KFF Health News,  Akron News Reporter; by Céline Gounder; 3/29/26 When Raven Kinser walked into a Virginia Department of Motor Vehicles office two summers ago, she completed a driver's license application that included the option to register as an organ donor. The form provides a checkbox to opt in, but not one to opt out. Kinser left the donor registration box unchecked, reflecting her decision to reverse an earlier donor registration. Six months later, after she was declared dead at Riverside Regional Medical Center in Newport News, Virginia, her parents say, they learned that her decision did not prevent organ procurement. Raven's case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out or to ensure a later "no" overrides an earlier "yes" in a different state.

Part of the ‘nephrology toolbox’: ASN releases conservative kidney management guidance Healio; by Lucas Laboy, Susan P. Y. Wong, MD, MS, Jane O. Schell, MD, MHS; 3/27/26 The American Society of Nephrology issued new kidney health guidance on conservative management as a practical treatment option for patients with kidney failure. Key Takeaways:

Building excellence: The journey to American Heart Association Certification Journal of Hospice & Palliative Nursing; by Fahey, Donna M. MSN, MFA, RN, AHN-BC, CHPN, CNL; 3/24/26 Heart failure patients often arrive at hospice with advanced symptoms, variable care plans, and limited coordination across settings. To address this, Samaritan Healthcare and Hospice pursued the American Heart Association Palliative/Hospice–Heart Failure Certification. The initiative required a full system redesign focused on standardizing education, documentation, care coordination, and performance measurements. This article outlines the challenges encountered ... and describes the process used to achieve certification in October 2025. 

Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life Pediatric Critical Care Medicine; by Sabrina Derrington, Elizabeth G Broden Arciprete, Matthew C Lin, Simon J W Oczkowski, Amanda Alladin, Uchenna E Anani, Amanda K Borchik, Cassandra A Collins, Claudia Delgado-Corcoran, Mindy J Dickerman, Christopher G Harrod, Natalia Henner, Alexander A Kon, Mithya Lewis-Newby, Blyth T Lord, Ashley-Anne Masters, Sarah McCarthy, Katie M Moynihan, Sara M Munoz-Blanco, Lauren Rissman, Kathryn E Roberts, Amy B Schlegel, Ashleigh Schopen, Linda B Siegel, Harriett Swasey, Sarah E Wawrzynski, David J Zorko, Danielle D DeCourcey; 3/20/26 online ahead of print Objectives: To develop and provide evidence-based recommendations for EOL care and management of critically ill neonatal and pediatric patients and their families. Results: The [21-member multidisciplinary panel of experts] generated five conditional recommendations and one good practice statement, focused on advance care planning, pediatric palliative care consultation and education, systematic symptom management, bereavement support, and health equity in EOL care.

Facing loss & cancer: A daughter’s dual grief  Time.News; by Ethan Brooks; 3/22/26 ... We hadn’t told the kids yet. There was nothing definitive to say, only a growing dread. I braced myself to project a semblance of cheerfulness when Molly and Henry returned from their tournament, but it proved unnecessary. My sister called with news that eclipsed everything: our father was dying. Both our parents, long divorced, were in hospice, on opposite coasts. My mother’s decline had begun in June, but my father’s was swift, a mere week in the making and we hadn’t anticipated him going first.

The good deaths of people who never marry: Lifelong single people are most likely to die pain-free and at peace. Psychology Today; by Bella DePaulo, PhD; 3/8/26 People who are single and want to stay that way are often taunted with scare stories about what will happen to them toward the end of their life—they will grow old alone, they will die alone, and all the rest. Same for people who have no children. But is the quality of the end of their lives really worse for those who never marry (or never have kids) than it is for those who are married, remarried, divorced, or widowed (or who have grown children)? We now have an answer, and it is not at all what those dire warnings predicted.Editor's Note: This Psychology Today article provides an additional focus on "people who never marry" from the article we posted on 3/20/26, “We make our own families”: Do child-free people die alone? Hospice worker shares her experience. Important: "child-free" does not necessarily mean the person never married. Likewise, "never married" does not necessarily mean the person is "child-free."

Diagnosed with pancreatic cancer: Now what? University of Michigan Health | Michigan Medicine; by Nicole Fawcett; 3/17/26 Pancreatic cancer remains one of the deadliest of the major cancers, with a five-year survival rate of only 13%. It's a complex and stealthy disease that is often difficult to treat and can be scary for patients and their family. ... “As research advances our understanding of pancreatic cancer, we’re doing better at taking care of patients. ...” said Evan Glazer, M.D., Ph.D., Clinical Director of the Pancreatic Cancer Program at University of Michigan Health and Associate Director of Clinical Research in the Rogel and Blondy Center for Pancreatic Cancer. ...