Literature Review

OP-ED: How hospice care falls short for people living with dementia Being Patient - Alzheimer's News, Advice, Stories & Support; by Maria J. Silveira; 5/30/25Only 12 percent of Americans with dementia ever enroll in hospice. This may be due to how hospice is structured and paid for in the U.S., explains University of Michigan associate professor of internal medicine Maria J Silveira. ... In contrast to the former president [Jimmy Carter's extended hospice care], his wife, who had dementia, lived only nine days under hospice care. Palliative care physicians like myself who treat both conditions are not surprised at all by this disparity. ... Strikingly, only 12 percent of Americans with dementia ever enroll in hospice. Among those who do, one-third are near death. This is in stark contrast to the cancer population: Patients over 60 with cancer enroll in hospice 70 percent of the time.

ALS and mental health: The importance of caring for the whole person ALS Association; by Amber Johnstone, MSW, LISW-S; retrieved from the internet 5/27/25 ... May is ALS Awareness Month and also Mental Health Awareness month. ALS and Mental Health go hand in hand. One of the first things I tell newly diagnosed individuals that I work with is that ALS affects the whole family. And to be truthful, it affects many more than just that nuclear family unit. A person living with ALS is like a pebble thrown into a pond. That first splash is the biggest, but then the water ripples all the way out to the edges of the pond. Those ripples are all the people with which the person with ALS shares their journey. ... The ALS Association understands how important mental health can be.  ... The ALS Association is proud to offer ALS Academy to community healthcare professionals and caregivers.  ALS Academy is free, online, self-paced, catalog of ALS education videos.  

Hospice visits and perceived hospice quality among Assisted Living residents Journal of the American Geriatrics Society; by Wenhan Guo, Shubing Cai, Yue Li, Brian E. McGarry, Thomas V. Caprio, Helena Temkin-Greener; 5/19/25 Background: Hospice services are widely used by assisted living residents at the end of life, yet concerns exist about the adequacy and quality of hospice care in this setting. Conclusions: Higher frequency of hospice staff visits was associated with better perceived hospice quality. Policies supporting greater hospice staff engagement, including nonclinical staff, may enhance end-of-life care experiences for assisted living residents.

The future of dying with Dr. Ira Byock | Pop 1205 Practice of the Practice; podcast by Joe Sanok with Dr. Ira Byock; 5/14/25 How can we embrace conversations about death and dying? What is the healing power of forgiveness and connection in end-of-life care? When we face morality, how can we transform fear into meaningful connections? In this podcast episode, Joe Sanok speaks about the future of dying with Dr. Ira Byock. .. In this podcast: 

[June 12-18, 2025] Why celebrating CNA Week is a big deal ShiftMed; by Sarah Knight; 4/23/25 National Certified Nursing Assistant (CNA) Week, which kicks off on the Thursday of the second full week of June, is an annual tribute to the dedicated individuals who form the backbone of our healthcare system. So, as we approach CNA Week 2025, we must recognize their tireless efforts and unwavering commitment. ... CNA Week 2025 kicks off on Thursday, June 12 and runs through Wednesday, June 18. This year’s theme, “We Are the Champions,” celebrates CNAs as the unsung heroes of frontline care—professionals who ensure patients feel seen, heard, and truly cared for every single day. ...

Honey, Sweetie, Dearie: The perils of elderspeakKFF Health News, originally published by The New York Times; by Paula Span; 5/9/25 A prime example of elderspeak: Cindy Smith was visiting her father in his assisted living apartment in Roseville, California. An aide who was trying to induce him to do something —  Smith no longer remembers exactly what — said, “Let me help you, sweetheart.” “He just gave her The Look — under his bushy eyebrows — and said, ‘What, are we getting married?’” recalled Smith, who had a good laugh, she said. Her father was then 92, a retired county planner and a World War II veteran; macular degeneration had reduced the quality of his vision, and he used a walker to get around, but he remained cognitively sharp. People understand almost intuitively what “elderspeak” means. “It’s communication to older adults that sounds like baby talk,” said Clarissa Shaw, a dementia care researcher at the University of Iowa College of Nursing ... “It arises from an ageist assumption of frailty, incompetence, and dependence.” Its elements include inappropriate endearments. “Elderspeak can be controlling, kind of bossy, so to soften that message there’s ‘honey,’ ‘dearie,’ ‘sweetie,’” said Kristine Williams, a nurse gerontologist at the University of Kansas School of Nursing ...

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.

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:

What not to say to patients with serious illnesses Medscape; by Lambeth Hochwald; 4/30/25 Robert Den, MD, a radiation oncologist in Philadelphia, constantly reminds himself that while he’s in the ‘cancer world’ every minute of the day, his patients aren’t. “As oncologists, we may be meeting with the third patient that day with a newly diagnosed metastatic cancer, but for this individual, this is their first time hearing news like this,” Den told Medscape Medical News. That’s just one reason Den says words matter. ... [He identifies] "Five Things Docs Shouldn't Say" ...

From stigma to support: Changing the cancer conversation Oncology Nursing Society (ONS); by Anne Snively, MBA, CAE; 4/29/25 Certain treatments (palliative care, opioids) and diagnoses (lung cancer) are more prone to association with cancer-related stigma. Nurses can play a vital role in reframing these thoughts and promoting empathy. ... Caner-related stigma has wide-reaching effects across the care continuum, including poorer patient outcomes. ...

Professor teaches student physicians how to use art to connect with end-of-life patients Thomasville Times-Enterprise, Moultrie, GA; by Staff Reports; 4/23/25Richard Curtis of Thomasville teaches art classes at Thomas University, but he’s also an end-of-life doula who volunteers with patients through Archbold Hospice, integrating his artistic skills into his volunteer work. Earlier this month, Curtis showcased his blend of art, medical care, and human interaction during a session of the Medical Humanities course at PCOM South Georgia. Led by faculty member Thomas Last, PhD, the course aims to help student physicians transcend the science of medicine. “The Medical Humanities course supports students’ growth into humanistic, socially conscious physicians by providing reflective opportunities and meaningful experiences that deepen their understanding of diverse patient perspectives,” Dr. Last said.Editor's note: Do you dismiss this? Does it seem too "out there"? For stronger context, Sandra Bertman, PhD, FT pioneered Arts Medicine with medical students and other healthcare clinicians. For most of her career, Bertman was Professor of Humanities in Medicine at the University of Massachusetts Medical School and Graduate School of Nursing, where she founded and directed the Program of Medical Humanities and Arts in Healthcare. (More personally, I've been blessed to know Sandra as my colleague and friend.) Dr. Bertman was awarded the Robert F. Kennedy Award for Social Justice (2018). Her primary publications include ...

Special team at Norton Children's Hospital focused on giving the gift of life CBS WLKY-32, Louisville, KY; by Jennifer Baileys; 4/21/25 Caring for sick and dying children is a tough and heartbreaking job. One special group at Norton Children's Hospital is focused on helping these children and their families. ... "She's missing the left side of her heart," Kindra Edwards, patient mother, said. ... Edwards said there was one consistent source of strength and encouragement the Norton Pediatric Support Team. "They're always there. You know, coming in, checking on us when in our multiple stays at the hospital," Edwards said. The team is made up of pediatric and palliative care specialists, nurses, social services, therapist and pastoral care. ... [Through two decades,] pediatric palliative care has evolved. At Norton Children's Hospital it has grown into a team of almost a dozen people, specializing in not just treating, but caring for the sickest patients and their families.

“It’s an homage”: Noah Wyle quietly sneaked in a tribute in one of the best episodes of ‘The Pitt’ FandomWire; by Arian Cruz; 4/18/25 In the fourth episode of The Pitt titled 10:00 A.M., Noah Wyle’s Dr. Michael ‘Robby’ Robinavitch monitored Mr. Spencer during his final hours while dealing with his own thoughts about the death of his beloved mentor, Dr. Adamson. He remembers the advice he received from him and shared it with the children of the dying patient as they waited for their father to pass. The phrases ‘I love you,’ ‘Thank you,’ ‘I forgive you,’ and ‘Please forgive me’ are words that need to be heard when someone is at the end of their life. Wyle revealed that he took these lessons from palliative care physician and author Ira Byock when he was writing the screenplay. Wyle said these short phrases are profound and hold deep meanings beyond their simplicity. He made sure to weave them in on the show while taking inspiration from his own mother for the emotional scenes. He shared via USA Today: "A very similar event had played out with my mother and her brother when saying goodbye to my grandfather. After she shared this with me, I just said ‘Thank you,’ went right back to my typewriter and wrote the scene. It’s an homage to my mother, my uncle and my grandfather.Editor's and Publisher's note: And we thank you, Dr. Ira Byock, for your profound, immeasurable influence for so many of us--professionally with those we serve, and personally with our own families and friends.