Literature Review

Do you know how to prepare for your digital life after death? CU Boulder’s student-run clinic has some adviceThe Conversation; by Dylan Thomas Doyle, Jed R. Brubaker; 6/10/25From family photos in the cloud to email archives and social media accounts, the digital lives of Americans are extensive and growing. According to recent studies by the password management companies NordPass and Dashlane, the average internet user maintains more than 150 online accounts. Individuals produce hundreds of gigabytes of data each year. But few people have plans for what happens to that digital legacy after they die. Unlike physical possessions, online assets often don’t pass smoothly from one generation to the next. Loved ones struggle to access important accounts or recover treasured photos. Many families face these challenges while already overwhelmed with grief.

Sky Harbor program teaches TSA to help passengers with dementia. It's the 1st of its kind in U.S. 91.5 KJZZ Phoenix; by Kathy Ritchie; 6/17/25  For the first time anywhere in the U.S., Transportation Security Administration officers at Sky Harbor Airport are learning how to help travelers living with dementia. "So during this simulation, we're going to be wearing sunglasses, headphones, and both pairs of gloves," said Calli Carlson with Hospice of the Valley during a recent training session. "It's going to be about an 8-minute experience.  So those headphones are going to tell you what to do with your blue bag. Do the best that you can." She’s leading the agents in a simulation so they experience what it's like to have dementia. "So this interactive Dementia Moments training is one of the first trainings that has been provided to TSA agents." This simulation uses special glasses that impair vision, headphones to mimic audio distortion and gloves which affect dexterity.Editor's Note: Bravo! Do you provide any similar type of training for your employees and volunteers, designed to simulate contexts and interactions with persons with dementia? Surely, you can! 

‘Let’s talk’: How to help families have difficult conversations Yale Medicine; by Carrie Macmillan; 6/10/25 At a time when modern medicine is allowing people to enjoy longer, fuller lives, mortality is not always a chief concern. But when a serious illness occurs, the topic becomes unavoidable. This became especially clear during the early days of the COVID-19 pandemic when hospitals were overrun with patients, many with grim prognoses. “The pandemic gave all of us a sense that life can be short and there’s the very real possibility of dying,” says Jennifer Kapo, MD, director of the Palliative Care Program at Yale New Haven Hospital. “It opened the door for us to talk more about death and have a better sense of our mortality.” ...

Local bat mitzvah project becomes ‘bear’ mitzvah Columbus Jewish News, Columbus, OH; by Bill Motchan; 6/4/25 Most 13-year-olds preparing for their b’nai mitzvah mark the occasion by completing a community service initiative. Emily Cammeyer had her bat mitzvah in 2012, but her mitzvah project lives on. In fact, it recently turned 13. The program is known as Love & Hugs and is part of the admission process at Wexner Heritage Village’s Zusman Hospice. A new hospice patient receives a stuffed bear to be there as a comfort tool. Eventually, the bear is reunited with the family of the patient. For her mitzvah project, Cammeyer raised enough money to donate 100 bears to Zusman Hospice. Since then, the program has placed more than 4,000 bears. ... “Our social workers help match the bear to the patient,” Sears told the CJN. ... Personalizing the bears was part of an evolution of the program, but it has made it special for hospice patients, Cammeyer said.

A World War II hero is facing his final battle - with Medicare | PennLive letters PennLive Patriot News; by PenLive Letters to the Editor; 6/5/25 “Is this how one treats a 100-year-old World War II Army veteran?” I am such, having defended my country in the Philippines and then as one of the first GIs to step on Japan’s shores when it surrendered. Today, I am a widower, living alone under hospice care in the same small, comfortable home my wife and I cherished for so many years. My health condition has deteriorated dramatically, due to the ravages of ESRD, bladder cancer, anemia, high blood pressure, depression, and loss of balance. I am mostly bedridden, waiting for the inevitable. And yet, just now, I have received a Notice of Discharge from hospice because of an “extended prognosis,” literally meaning in lay terms that, “I’m living too long for hospice and Medicare purposes.” They argue that I’m now able enough medically to make it on my own without hospice care! ... I know I have only weeks, perhaps a month to live, but their rejoinder is simply, “Thank you for your service, but get out of our sight.”Editor's note: Click here for a similar related article and my editor's note, Dementia patient discharged from hospice over Medicare requirement. Here’s why it happened. (One of our "most read" Sunday posts.) These cases are too common. Basic communication, information, and coordinated care planning can mitigate much of the distress and pain. How does this dynamic play out with the patients and families you serve?

Gaps in the coordination of care for older adults with or at risk for cardiovascular disease The American Journal of Managed Care; by Lisa M. Kern, MD, MPH,Joselyne E. Aucapina,Samprit Banerjee, PhD, Joanna B. Ringel, MPH, Jonathan N. Tobin, PhD, Semhar Fisseha, MPH, Helena Meiri, MA, RN, Madeline R. Sterling, MD, MPH, Kurt C. Stange, MD, PhD, Monika M. Safford, MD, Paul N. Casale, MD, MPH; 6/3/25 ... To determine whether older adults with cardiovascular disease (CVD) or CVD risk factors perceive gaps in communication among their providers and whether they consider those gaps to be consequential, we conducted a cross-sectional survey of Medicare beneficiaries 65 years and older with CVD or CVD risk factors and highly fragmented ambulatory care (reversed Bice-Boxerman Index score ≥ 0.85).

Hawai'i Pacific University alumni join forces to build a pioneering palliative care team for student excellence Special to The 'Ohana - HPU's Daily News, Honolulu, HI; 6/3/25 A group of HPU alumni from the nursing, social work, public health and business administration programs ... will be working towards steering a newly established palliative care team at HPU to assist nursing students, social workers and public health students to play an important role in understanding palliative care, hospice and communication with family and survivors. The team will play a role in setting up clinical placements in the community at St. Francis Palliative Care Units and Hospice, to give our nursing students invaluable hands-on experience in providing compassionate care for patients with serious and life-limiting illnesses. HPU Assistant Professor Joy Bliss, Ph.D., will also be designing simulations for “effective listening and communication skills,” to enhance student’s performance and skills in grief and this specialty of nursing. ... This initiative is not only an opportunity to strengthen the clinical training of nursing students, but also an essential step forward in improving the availability and quality of palliative care in Hawaiʻi. 

Remove barriers that restrict hospice care, Alliance offers in new report McKnights Home Care; by Adam Healy; 5/28/25 Hospice providers can boost quality and patient satisfaction with a focus on transparent, culturally sensitive communication with clients, according to a new report by the National Alliance for Care at Home. ... For the report, the Alliance surveyed 2,000 adults who either recently experienced the death of a loved one or have been involved in healthcare decisionmaking for a person with a serious illness. Respondents included individuals of a variety of ages, income levels, ethnicities and educational backgrounds. ... . For many seniors, one of the largest barriers to care is ineffective communication, the survey found. Language barriers are a significant hurdle for non-English speaking older adults, particularly those who are first generation immigrants, it noted. Many seniors are also less comfortable with technology-based communication than younger people, and prefer face-to-face conversation over text messages.

"You're next": People are sharing the last words they heard someone say as they were dying, and they're not all inspiring BuzzFeed; by Mike Spohr; 5/21/25There's so much we don't understand about the end of life. Recently, we shared a post where Quora users shared their experiences being present for the final moments of someone's life...and hearing their last words. Well, as it turns out, BuzzFeed's readers wanted to share their experiences hearing someone's last words too, so we rounded them up here:

What is at-home hospice care and how it works near NYC Medical Device News Magazine; 5/19/25 

Exploring overlooked collaborative opportunities during end-of-life care Medical Xpress; by Institute of Science Tokyo; 5/14/25 [This study's researchers describe:] "Bereaved family members broadly recollected the mixed regretful actions and decisions that should have been taken during the end-of-life care process. Coordination and cooperation challenges that existed between health care professionals and family caregivers emerged as factors that impeded these actions at the time." [They identified three types of] unintended, percolated work (UPW). ...

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 ...

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: