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.

The importance of using the right name Fernandina Observer, Fernandina Beach, FL; byLinda Hart Green; 6/8/25 An article in the Times-Union of Jacksonville from May 25, 2025 was titled, “Don’t you ‘Sweetie’ me!” by Paula Span. The article was about “elderspeak.” It cited examples of how caregivers speak to the elderly in an overly familiar way or as if they were children. They are not called by name but rather are called "sweetheart” or the like. Elderspeak may be in words or in tone. Experience bears out that elderspeak makes situations worse. ... This article triggered a memory of an important learning experience ...

Integrating psychotherapeutic concepts to enhance serious illness communication: Assessment of a model curriculumJournal of Palliative Medicine; Danielle Chammas, Keri Brenner, Amanda Moment, Sarah E. Byrne-Martelli, Leah B. Rosenberg, Daniel Shalev; 5/25 Serious illness communication training often focuses on sharing medical information, discussing goals of care, and supporting patients and caregivers. Few communication frameworks explicitly integrate psychosocial concepts to improve therapeutic efficacy. Using Kern’s six-step curriculum development model, we created an interactive workshop focused on psychological formulation and countertransference. Results: Satisfaction was high (92% satisfied or highly satisfied), and most participants reported meaningful impact on their clinical practice (89%), teaching (93%), and team collaboration (93%) at eight-week follow-up. Conclusions: A multisite, half-day workshop significantly enhanced palliative care clinicians’ knowledge and perceived application of core psychotherapeutic concepts.

Celebrating Father’s Day when Dad is on hospice Roze Room Hospice, Culver City, CA; retrieved from www.rozeroom.org on 6/12/25Father’s Day is often synonymous with backyard cookouts, gifts, cards and large family gatherings. Honoring your father or a father figure means celebrating the role this important person has played in your life. It can be a sentimental day where we slow down and consider the gift this person has been in our lives. But if your father is in hospice care, Father’s Day can take on even more significance. You may believe the day will be filled with sadness and unease. But truly capturing this day will be a gift to your dad and all those who love him. Here are five ways to celebrate Father’s Day when your dad is on hospice.

‘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.” ...

Terminally ill woman, 35, cancels plans - best friend’s reaction backed Miami Herald, Miami, FL; by Lydia Patrick, Newsweek Life; 6/5/25 A woman has sparked an outpouring of support online after admitting she felt relieved when her terminally ill best friend canceled their remaining plans. The anonymous Reddit user, ... shared her emotional experience ... where her confession received over 8,000 upvotes and hundreds of comments. She explained that her best friend, Sarah, 35, had been diagnosed with an aggressive form of pancreatic cancer and her condition rapidly worsened. ... In an effort to make the most of her time, Sarah created an ambitious bucket list, which included a trip to the coast, a party, and a final hike to her favorite mountain. However, after halting treatment, she transitioned into hospice care and most of the planned activities were either canceled or significantly scaled back. ... [Serving as primary caregiver, she wrote,] "And I'm relieved. I'm utterly, profoundly ashamed to admit it, but I'm exhausted. Mentally, emotionally, financially. ..." ... Dr. Terri Daniel, a grief counselor and hospice chaplain at Forest Park Hospice, told Newsweek the Redditor's experience is not uncommon and far from selfish.

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.

Experts discuss what hospice and palliative care are and how they can help ideastream public media; by Leigh Barr; 5/21/25Contemplating a life-limiting or life-changing illness or even death can be difficult topics for Americans.  Last year, USA Today conducted a survey which found about 30% of Americans surveyed found it difficult to talk about or even contemplate their own mortality. When it comes to managing serious illness or the final phase of life, surveys show that a majority of Americans say they have at least heard of hospice or palliative care but most admit they may not know a lot about either topic. We're going to talk about both to begin Wednesdays “Sound of Ideas” and try to dispel some of the myths that may surround hospice and palliative care. 

NorthStar Care Community launches 'Life's Big Moments' campaign to initiate nationwide conversation about end-of-life hospice care PR Newswire, Ann Arbor, MI; by NorthStar Care Community; 5/19/25 NorthStar Care Community has launched Life's Big Moments, a campaign that celebrates the beauty of life's journey from the big milestones to the small, everyday moments that leave the deepest impact on our well-being and purpose. The campaign aims to initiate conversation and awareness around end-of-life care while also raising money to benefit the members of NorthStar Care Community. Companies, organizations, and individuals are invited to support these efforts throughout the campaign, focusing on recognizing the needs of our Veterans.

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). ...