Literature Review

[United Kingdom] New end-of-life checklist designed to remove stress in time of crisis Independent; by Aine Fox; 10/27/25 Marie Curie has published an end-of-life checklist to encourage the public to think about their end-of-life care. The list, curated by clinicians, covers everything from wills to wakes and what we might want to happen to pets and social media accounts when we die. The document features five categories, including legal and money matters, people, pets and things important to me, an advance care plan, my funeral, a wake or celebration of life, and making and leaving behind memories. Editor's Note: To download USA Advance Directives for each state, visit (1) CaringInfo (set up by NHPCO 15+ years ago), A Program of the National Alliance for Care at Home, or (2) AARP's Find Advance Directives Forms by State (uses CaringInfo's form, but more user-friendly navigation).

Stitched with love: Allied’s memory bears offer comfort to grieving families in Northeast Pennsylvania WVIA News - PBS/NPR, Scranton, PA; by Lydia McFarlane; 10/27/25 Barbara Rushinski received a bear made of her partner’s pajamas after he passed in hospice care at Allied Services. She was so moved, she put her sewing skills to good use and joined the team of volunteers making the bears for grieving families in Northeast Pennsylvania. ... Allied offers its memory bears to grieving families whose loved ones died in hospice. ... Joyce Wizda started the program at Allied more than six years ago when she joined the healthcare system as a social worker. ... She estimates the volunteers make about 150 bears a year. ... Wizda encourages families to send in clothing items from their loved one’s closet to ease their grieving journey.

How to manage financial caregiving for an aging parent AOL.com; by Kerry Hannon; 10/25/25Steering end-of-life financial decisions for an aging parent is not a job many of us would choose. But we do — and feel our way through the messy emotions as best we can. ...[From an interview:] "[Your mom] was rejected for hospice care, which is covered by Medicare. Can you elaborate on that?""That was just such a slap in the face because it's a hard decision to go to hospice. ... My mom made that decision for herself, but my brother, the doctors, and me had to be on board with it in order for her to do it. The only reason they rejected her is because they thought she would be too costly. They do a cost-benefit analysis of how long that person is going to last— how much [in] resources is she going to consume? They decided that her diagnosis was too murky to justify putting her on hospice at that point. I finally found another hospice company to accept her. And she died in two weeks."

Veterans with burdened caregivers more likely to enter nursing homes, study findsMcKnight's Home Care; by Foster Stubbs; 9/30/25Veterans whose family caregivers reported higher emotional burden and depression were more likely to be admitted to nursing homes after three-year follow-ups, according to a September study published in the Journal of the American Geriatrics Society.Publisher's note: Perhaps higher emotional burden and depression among family caregivers of veterans occurs in hospice, too.

Why caring for a parent is hard for doctors MedPage Today's KevinMD.com; by Barbara Sparacino, MD; 10/19/25 I can sit with patients and families and talk about hospice, dementia, or end-of-life care without hesitation. Years of training as a physician and geriatric psychiatrist have prepared me for those conversations. But when my own parent needed care, all that training suddenly felt useless. Medical knowledge didn’t shield me from fear or guilt. It didn’t stop the second-guessing that came with every decision. It didn’t help me navigate the family disagreements about “what Mom would have wanted.” In that moment, I wasn’t the physician. I was the daughter, and that was far more complicated. Why caring for our parents feels different ...

From mom-care to action: Identifying the crises in eldercare Minnesota Women's Press; by Amy Gage; 10/15/25 “I didn’t set out to write a book,” author Judy Karofsky said. ... “My mom was my inspiration.” ... DisElderly Conduct: The Flawed Business of Assisted Living and Hospice (New Village Press, 2025) ... began as a notebook of jokes and one-liners that her mom would toss off during their time together. A one-time amateur comedienne, Lillian Deutsch “was an amazing personality,” Karofsky says. DisElderly Conduct walks readers through Karofsky’s journey through six assisted living facilities and eventual hospice care before her mother’s death in 2018. Several themes emerge in the well-researched book:

The Family Caregiver Act—Safeguarding the human care chainJAMA Pediatrics; by Eli Y. Adashi, I. Glenn Cohen; 9/25On August 9, 2024, Jay Robert Pritzker, governor of Illinois, signed into law House Bill (HB) 2161 (Public Act 103-0797), likely the nation’s leading caregiving antidiscrimination legislation. The new law, which took effect January 1, 2025, prohibits employment discrimination against individuals saddled with family caregiving responsibilities. It is by dint of the enactment of HB 2161 that Illinois became the sixth state or district to legally require some form of this employee protection. Alaska, Delaware, Maine, Minnesota, New York, and Washington, DC, precede it, though some of these limit their protection to parents. Moreover, HB 2161 defines personal care as activities wherein a family member assumes responsibility for one or all of the basic needs of an ailing relative, replete with the provision of emotional support and/or transportation to medical appointments. A covered family member may include a child, stepchild, spouse, domestic partner, sibling, parent, mother-in-law, father-in-law, grandchild, grandparent, or a stepparent.Assistant Editor's note: "The Human Care Chain"--what a wonderfully descriptive title this is to describe the Illinois law. Those words evoke strong images of connectedness, humanness, caring, compassion, dedication, goodness, and love. As end-of-life and serious illness care providers, we understand the tremendous value, comfort and necessity of The Human Care Chain.

Telepalliation creates a sense of security: A qualitative study of patients with cancer receiving palliative carePalliative Medicine; by Jarl Voss Andersen Sigaard, Elisabet Dortea Ragnvaldsdóttir Joensen, Una Rósa Birgisdóttir, Helle Spindler, Birthe Dinesen; 10/7/25 ... The aim of this study was to explore patients' experiences with the functionality of the Telepalliation program while receiving specialized palliative care. ... Results: Four key themes emerged: "Sense of coherence," "Telepal platform," "Roles of spouse/partner and relatives," and "Cross-sector collaboration." The program improved patients' sense of security and coherence by enhancing communication with healthcare professionals. ... The platform also successfully integrated relatives into the care process. Editor's Note: While this research was conducted in Denmark, it surely resonates with patient care in the US. Reference articles in the uncertainties of government shutdowns, legislative needs to extend telehealth, and more: 

How palliative care supports families emotionally and physically Elevated Magazines; 10/3/25 People often feel lost when someone they love is diagnosed with a serious illness. The shift in daily routines, the constant medical appointments, and the uncertainty about the future can feel overwhelming. Palliative care steps in to ease this transition, offering medical expertise and guidance that helps families adjust to new roles and responsibilities. Having a care team that understands both medical needs and the emotional burden can make a significant difference.

How personalized medicine empowers patients and cuts healthcare costs Becker's Hospital Review; by Mary Sirois; 10/1/25 ... How do we unlock a new era of healthcare excellence? The answer lies in a fundamental shift: personalized care delivered within a truly patient-centered framework that improves satisfaction for patients and clinicians while enabling better clinical, operational, and financial outcomes across the healthcare ecosystem. ... Imagine a healthcare system where:

Doyel: I didn't know how strong and kind my special Mom was. Not until she started dying. Indianapolis Star, Indianapolis, IN; by Greg Doyle; 10/1/25 The last time we talked, I told my mom the truth: I’d missed just how wonderful she was. Make no mistake, I knew she was wonderful. Kind, considerate, strong – she checked all the best boxes. And generous? Mom’s the most generous person I’ve ever known, and I’ve known it for years. But I didn’t know just how generous she was. Not until she started dying. Didn’t know how strong she was, either. Not until she was so weak she couldn’t stand on her own two feet. That’s when I finally saw it. ...

The effect of the Care Ecosystem Collaborative Care Model on end-of-life outcomes for people with dementia and their caregiversAmerican Journal of Hospice & Palliative Care; by Lauren J Hunt, Krista L Harrison, Rachel Kiekhofer, Jennifer Merrilees, Alissa B Sideman, Sarah Dulaney, I Elaine Allen, Kirby Lee, Winston Chiong, Sarah M Hooper, Stephen J Bonasera, Tamara L Braley, Bruce L Miller, Katherine L Possin; 8/25Collaborative care models that feature care navigation have been found to have a range of benefit for people with dementia (PWD) and their caregivers, but their effect on end-of-life (EOL) outcomes has not been robustly evaluated. Our primary objective was to evaluate the effect of the Care Ecosystem-a telephone-based collaborative care model for dementia with care navigation-on EOL outcomes for PWD and their caregivers. Compared to Usual Care, Care Ecosystem caregivers had higher ratings of caregiver self-efficacy prior to PWD death ... but caregiver's satisfaction with EOL care did not differ between groups ... Qualitative analysis revealed Care Ecosystem provided helpful emotional and practical support, but participants wanted more anticipatory guidance, more information about hospice care and earlier referral, and better coordination with the healthcare team.

Carolina Caring Foundation helps hospice patient fulfill dream at North Carolina Zoo Carolina Caring, Newton, NC; Press Release; 9/23/25 A hospice patient fulfilled her lifelong dream of meeting and feeding a giraffe thanks to the Life Enrichment Fund through the Carolina Caring Foundation. Deborah, a patient at Carolina Caring, has always been fascinated by the wildlife of Africa, the work of Jane Goodall, and the unique beauty of giraffes. ... Deborah has always had an adventurous spirit. In the past, she tried many new experiences—including a fun helicopter ride with her family during a beach trip—but one thing she always yearned to do was meet a giraffe. Her Carolina Caring social worker, Carley, recognized this dream and soon created a pathway for this wish to come true. . ... Carolina Caring gave this family more than just a trip to the zoo. They provided a celebration and memory-making that the family will now forever carry in their hearts and minds.