Literature Review

Improving quality for gender-diverse hospice patients Hospice News; by Holly Vossel; 4/8/26 Various factors impede the ability of transgender and gender-diverse individuals to receive goal-concordant care at the end of life. Individuals in the LGBTQIA+ community often face greater risks of privacy violations, cultural suppression, disrespect and trauma compared to others, according to Amanda Monteiro, palliative care social worker at Mount Sinai Hospital. ... LGBTQIA+ individuals are often referred to hospice or palliative care later in their disease trajectories compared to others, according to Dr. Alexis Drutchas, palliative care physician at the Dana-Farber Cancer Institute. ... Clinicians need better tools to help guide end-of-life conversations with gender-diverse patients and their loved ones, said Dr. Ramón Rodriguez, palliative care physician at Massachusetts General Hospital.Editor's Note: For a definitive, groundbreaking resource, examine LGBTQ-Inclusive Hospice and Palliative Care : A Practical Guide to Transforming Professional Practice, by Kimberly D. Acquiva. 

Families face identity theft following a death Hospice News; by Jim Parker; 4/8/26 When a loved one dies, the specter of identity theft can loom large, particularly through unclosed digital accounts that family members may not be aware of. Approximately 2.5 million deceased Americans have their identities stolen annually, with roughly 800,000 of these cases specifically targeted because they have died, according to the State of California Department of Justice. Managing and closing digital accounts can help mitigate the risk of identity theft, according to Donnell Beverly, Jr., CEO of Eazewell.

Saad Healthcare’s ‘The Retreat’ offers comfort for hospice patients and families Fox10 News - WALA, Mobile, AL; by Lee Peck; 4/3/26 Behind Saad Healthcare sits a place for families seeking comfort and support during end-of-life care. They call it “The Retreat” — Saad’s inpatient hospice center. Gloria Massingill recalls her first visit three years ago, when her husband Kenny was looking for hospice care for his 93-year-old father. ... Saad’s The Retreat has 24 hospice beds on site and an additional 15 at their Providence location.

More people are choosing the option to die under Oregon’s Death with Dignity Act The Oregonian/OregonLive; by Kristine de Leon; 4/3/26 More people are turning to Oregon’s Death with Dignity Act – and more than ever are getting prescriptions for life-ending drugs, according to a new state data released Thursday [4/2]. For nearly three decades, the law has allowed Oregonians who meet certain conditions to receive prescription medications to help them end their lives, rather than waiting for a disease to run its course. ... An annual report compiled by the Oregon Health Authority shows more patients are seeking the option. Last year, doctors wrote 637 prescriptions under the Death with Dignity Act -- the highest number on record, according to state data. That’s a modest 5% increase from 2024, but part of a longer trend that has pushed participation steadily upward.

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)

Generations: Women’s History Month helps us remember women in our own history The Bemidji Pioneer; by Sue Bruns; 3/28/26 Whether you’re a history buff or not, I encourage you to take the last few days of March to reflect on some of the women you know or have known who are worthy of your admiration and reflection. ... I did a little online exploration and read about a few women I don’t recall my history classes mentioning. I encourage readers to go online and search sites like www.history.com and www.nationalwomenshistoryalliance.org. ... I have been blessed with truly amazing, strong, industrious, intelligent and compassionate women. Starting with my own mother.

New program and book examine best practices around end-of-life care for people living with Alzheimer’s Disease and related dementias (ADRD) Hospice Foundation of America, Washington, DC; by Lisa Veglahn;3/25/26 Hospice Foundation of America (HFA) will present its 33rd annual Living with Grief® educational program, Best Practices in Hospice Care for Advanced Dementia, addressing optimal care for the fastest growing segment of the hospice population. The program will be held live via Zoom on April 14, 2026, from noon—2 pm ET. According to the National Institutes of Health, researchers estimate that 42% of Americans over the age of 55 will at some point develop a form of dementia, all of which are terminal illnesses. ... In addition to the upcoming program, HFA has published a new volume of scholarly and personal work, Alzheimer’s Disease and Dementia: A Guide for Hospice Clinicians, edited by Kenneth J. Doka and Amy S. Tucci. The book offers valuable insights and practical approaches to delivering compassionate, person-centered end-of-life care to individuals with dementia and their loved ones. Editor's Note: Hospice Foundation of America has long defined standards for hospice education, and once again leads at a pivotal moment as dementia impacts Baby Boomers' end-of-life care. From their early satellite broadcasts that convened clinicians nationwide to today’s expansive reach, HFA has consistently translated complexity into practical, practice-changing insight. This work challenges us not only to learn, but to lead—bringing greater clarity, skill, and compassion to those living with dementia and those who walk beside them.

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.

How "The Pitt" can prepare you for the end of lifeKatie Couric Media; by Maggie Parker; 3/20/26 If you're sensitive to seeing death on screen, you shouldn't watch The Pitt. Set in a major city's emergency room, on the hit medical procedural, death is inevitable, and frequent. ... The way end-of-life issues are addressed on the show was carefully thought out and intentionally diverse. ... Unfortunately, it's rare for the media to portray death and dying authentically, according to Dr. Underleider's analysis of more than 141,000 scripted TV episodes from 2010 to 2020. ... This season, The Pitt takes its quest to realistically depict death to another level, with the introduction of a terminal cancer patient, Roxie, who knows what's coming and doesn't want to go home to face it. We spoke to Dr. Ungerleider about her reaction to Roxie's final moments, her experience working with the creators, what they get right about end of life, and why it matters. ...Editor's Note: Pair this with our previous posts, "HBO’s ‘The Pitt’ inspires viewers to consider organ donation, end-of-life planning" and "How ‘The Pitt' gets death right."

“We make our own families”: Do child-free people die alone? Hospice worker shares her experience Daily Dot; by Rebecca Leib; 3/18/26 According to a longtime hospice worker, being child-free doesn't affect end-of-life care, but having strong community ties does. The decision to have children is a deeply personal one, fraught with societal pressures and fears. One common fear is that a childless person might die alone. Recently, however, child-free advocate @wearechildfree shared a video dispelling that fear. Whether someone has kids or doesn't, she says, meaningful end-of-life care is not about children specifically, but the result of cultivating a close and loving community.

Mom of Frosty-loving daughter on hospice shouts out Wendy’s staff for ‘lovely gesture’ NBC Today Show; by Heather Marin, RD; 3/13/26 ... [Mary Adams] wanted to give a shoutout to a Wendy’s drive-thru employee in Palm Desert, California, who made her feel seen on a weekly Frosty run that’s deeply bittersweet. ... Purdie’s sister, Gretchen, was diagnosed with glioblastoma in 2023 [... and chose hospice care in January 2025]. Her appetite is limited these days. “Every week,” Purdie explains. “Someone from our family, usually my mom, goes to Wendy’s and gets six chocolate Frostys.” ... When Adams arrived at her local Wendy’s to pick up the weekly supply recently, a staff member recognized her. “Hey, you’re late!” said the team member, handing over the drink tray, “No spoons, right?” “Many days, there are very few reasons to smile while being a caregiver for her terminally ill daughter, but that interaction was a bright spot,” says Purdie. The whole family was touched that someone noticed the routine that is for them both life-sustaining and painful.

Chronic pain and unrecognized grief: epistemic barriers to personal and social recognition Medicine, Health Care and Philosophy; by Christopher Jude McCarroll, Ying-Tung Lin, Dominik Koesling, and Claudia Bozzaro; 3/29/26 What is it to grieve? What is the nature of grief? ... Importantly, a close examination of the phenomenology of chronic pain helps illuminate the ways in which it also involves the kind of losses that we can grieve over. The losses involved in experiences of chronic pain impact one’s practical identity in ways that can lead to grief. This chronic pain grief remains largely unrecognized, however. We outline four epistemic barriers to recognizing the grief involved in experiences of chronic pain. ...