Literature Review

A daughter’s cautionary elder care tale The Progressive Magazine - Book Review; by Bill Lueders; 5/12/25 The call that woke Judy Karofsky in the middle of the night on May 18, 2015, was from a hospice nurse, who got right to the point: “I’m calling to tell you that your mother has died.” Karofsky, deeply shaken by the unexpected news, managed to ask, “Did she struggle?” Karofsky’s important new book, DisElderly Conduct: The Flawed Business of Assisted Living and Hospice, does not mention the hospice nurse’s response to this question. But it does note that she called back a moment later to say: “I’m so sorry . . . . I called the wrong number. I’m at a different facility and I had the wrong file.” Karofsky’s mother, Lillian Deutsch, had not died at all. It was someone else’s mother. Apologies were made. This is just one of many stories Karofsky shares throughout the book about the final years of her mother’s life in Wisconsin. This particular anecdote strikes me as noteworthy not just as an example of the sort of awful things that can happen when facilities are understaffed and staff members are overworked, but also because Karofsky’s first reaction was to wonder whether she struggled.Editor's note: Though printed news typically lifts up the good, compassionate moments of hospice care, most all of us have experienced negative accounts--professionally and/or personally. While this book is sure to give significant insights, perhaps the most important lessons are waiting to be validated from your own family caregivers, employees, and volunteers. What stories are behind your lower-than-you-want CAHPS Hospice scores? Dig deeper. May we all listen, learn, and improve care.

Newly Available: Improving Dying Hospice Foundation of America, Washington, DC; Press Release, contact Lisa Veglahn; 5/7/25 Virtual reality, physical therapy, music therapy, pet care, and even a haircut are therapeutic, innovative, and practical ways to improve the quality of life for people with terminal illness and are profiled in a new book and continuing education course recently released by Hospice Foundation of America (HFA). “End-of-life care providers are doing amazing work that rarely gets the attention it deserves,” said Amy Tucci, HFA’s president and CEO. “With Improving Dying, HFA’s goal is to recognize their efforts and provide models that can be replicated to enhance care for dying and the bereaved.”

It's time to talk about LGBTQ+ elder care Psychology Today - Caregiving; by Stephanie Sarazin, M.P.P.; 5/6/25 A once-hidden story is helping us think about queer kinship and caregiving. Key points:

How to survive Mother’s Day when your mom is gone Psychology Today - Dementia; by Deborah Carr, PhD; 5/8/25 ... By age 50, about half of us have mourned the death of our mother. More than 4 million older women in the U.S. have dementia, and most have children who are witnessing their cognitive declines. Whether your mother has died or slipped into the grip of late-stage dementia, Mother's Day can be hard, although the sharp pangs of sadness tend to fade with time after a mom's death. So, how do you survive Mother’s Day when your mom isn't here to celebrate with you?

HOSPICE: Daughter embraces mom’s hospice journey  City Sun Times, Phoenix, AZ; by Lin Sue Flood; 3/25/25  As a nurse, Robin Benton is used to caring for people who are ill. But it’s different when your mother is the one who is sick. Her mom, Charlotte Brewer, a former nurse herself, has multiple myeloma, a rare type of blood cancer. In March 2024, the 80-year-old Valley resident decided to stop curative treatments in favor of comfort care with Hospice of the Valley, where she worked for over 10 years, before retiring in 2007. ... Charlotte’s Hospice of the Valley nurse, Kelly Langston, admires the way the family is living this stage of life with great intention, creating new ways to deepen their love for each other. “They came up with an idea for a hug shirt,” shared Kelly. “Everyone in the family painted their arms then took turns hugging each other — stamping an imprint of encircled arms on the shirts. It’s a way to feel each other’s hugs even when they aren’t together.” [View this creative shirt.]

CAREGIVING: For 27 years, I had minimal contact with my abusive mother. Then she moved in with me. HuffPost; by Carole Brodsky; 1/20/25  ... Living with my mom was the last thing I ever thought I’d be doing as an adult. Perhaps I accepted her back into my life because there were no other options available. Perhaps it was because I was the daughter of someone who in today’s vernacular would be called a “tiger mom,” and I’d been taught caring for an aging parent was what “good daughters” did.  ... As a child, my mother was abusive.  ... [Now, as] Mom’s verbal skills declined, we had to use our eyes, guts and hearts to discern the needs of a person whose tether to this world was fraying before our eyes. ... My partner has a saying: I always forgive, but I never forget. I have unequivocally forgiven my mother for everything. I have tried, with varying degrees of success, to let the vestiges of her abuse die with her and not invade the lives of my children, grandchildren and now, great-grandchildren. The work on forgiving myself will continue for the rest of my life.

When they don’t recognize you anymore: Dementia study looks at loved ones’ responses Penn Live - Nation & World News; by Paula Span, KFF Health News; 5/4/25 It happened more than a decade ago, but the moment remains with her. Sara Stewart was talking at the dining room table with her mother, Barbara Cole, 86 at the time, in Bar Harbor, Maine. Stewart, then 59, a lawyer, was making one of her extended visits from out of state. ... “She said to me: ‘Now, where is it we know each other from? Was it from school?’” her daughter and firstborn recalled. “I felt like I’d been kicked.” Stewart remembers thinking, “In the natural course of things, you were supposed to die before me. But you were never supposed to forget who I am.” Later, alone, she wept.

‘I want to pat dogs until I die’: End-of-life planning should be more than just Living Wills Healthy Debate; by Kathy Kastner; 5/4/25 France Légaré, Canada Research Chair in Shared Decision-Making and Knowledge Mobilization, wants to have stimulating conversations and be able to move around with her dog until she dies. Daneil Martin, the Chair of the Department of Family and Community Medicine at Women’s College Hospital, wants to “smell chocolate until I die.” The two doctors are among the 200+ who took the time to fill in the blank on a whiteboard, “I WANT TO__ UNTIL I DIE,” an initiative I undertook after tuning in to a hospice and palliative care medicine Twitter chat in the good old days of Twitter. As a layperson who became an entrepreneur in the health space, I was intrigued by the lament of health-care professionals on the chat: If only people talked about end-of-life wishes more, much grief could be avoided. 

To the brink and back: How near-death experiences can change how people work The Conversation; by Adauri.AI; 5/5/25 What happens when someone comes close to death and then returns to everyday life, including work? For some, the experience can be transformative. ... Although near-death experiences (NDEs) have been studied since the 1970s, we know relatively little about how they affect people after the event. Research suggests people who have near-death experiences may feel increased empathy, spiritual growth, a sense of purpose and even change how they approach their jobs. Our recent study explored how near-death experiences impact people’s return to work. We interviewed 14 working adults who had a near-death experience as a result of medical crises such as a heart attack or accidents such as a car crash. What we found challenges conventional ideas about success, motivation and workplace culture.

Pharmacist-led care in palliative settings: Using anticholinergics thoughtfully and compassionately Pharmacy times; by Diana Violanti, PharmD, Pamela S. Moore, PharmD, BCGP, and Alana Hippensteele; 5/5/25 The use of anticholinergic agents to manage terminal secretions, often referred to as the death rattle, remains a nuanced and evolving area of end-of-life care. While these medications are frequently used in hospice and palliative care settings to reduce secretion-related sounds that may be distressing to caregivers, their efficacy in improving patient comfort is less clear and often debated. ... Diana Violanti, PharmD, and Pamela S. Moore, PharmD, BCGP, discuss the nuanced use of anticholinergic agents for managing terminal secretions at end of life, highlighting practical considerations, timing, safety concerns such as delirium, and the limited yet evolving evidence supporting their role in palliative care.

A powerful film chronicles one man’s last days within a loving community for all to witness. Monterey County Now, Seaside, CA; by Pam Marino; 5/1/25 Facing certain death from a brain tumor, Ethan “E3” Sisser adopted a mantra. “I am embodied. I am empowered. I am ecstatic,” the 36-year-old would tell himself, in order to ward off oncoming seizures, carry himself through pain or recite for his many followers on social media. “E3” became his nickname. We see Sisser, looking into the camera, recite the mantra early in the documentary, The Last Ecstatic Days, released in 2024. We also meet his hospice and palliative care physician, Aditi Sethi, who leaves her position to become his death doula and friend. She fulfills his wishes for a peaceful death surrounded by a caring community, filmed for others to learn from. Director Scott Kirschenbaum – who made one of the definitive documentaries about birth, These Are My Hours – spent the last two weeks of Sisser’s life near his side with a camera, capturing each moment.

Caregiving: Going it alone is harderMcKnight's Senior Living; by Lois A. Bowers; 4/28/25I was the primary family caregiver for my father for the more than eight years he lived in a skilled nursing facility, and I can’t imagine what that time would’ve been like had my three siblings not been part of the equation. Now a new study has found that, yes, when it comes to caring for aging parents, people who have siblings probably have a better time of it than people who are only children. The findings may help you in your interactions with residents’ loved ones.Publisher's note: A timely reminder that caregiving is challenging - for ourselves, our staff, and the patients and families we serve...

[Australia] New cuddle bed installed at Harden Hospital to support end-of-life care Forbes Advocate; 4/20/25 Harden Hospital’s acute ward has received a new ‘cuddle bed’ thanks to the Murrumburrah-Harden Hospital Auxiliary branch, which recently funded the purchase to support patients and their families during palliative care. ... The cuddle bed was a staff-suggested purchase, designed to provide comfort and dignity in end-of-life situations. The bed can electronically expand from a standard single to a double size at the push of a button. It allows family members to lie beside their loved one during their final moments, eliminating the need to sit upright in a chair or attempt to share a single bed.