Literature Review

Families demand end to Medicare waiting period for early-onset Alzheimer’s patients Washington Examiner; by Elaine Mallon; 6/15/25 Jason Raubach was diagnosed at 50 years old with early-onset Alzheimer’s disease — a diagnosis that affects nearly 200,000 Americans. He received the diagnosis in 2018, completely upending life for his family. His youngest child was just a freshman in high school. ... Shortly before receiving an official diagnosis, Jason Raubach lost his job, having to move his family onto a consolidated omnibus budget reconciliation act health plan, or COBRA plan, which allows a person to keep their health insurance even after losing their job. “It wasn’t cheap,” Elizabeth Raubach said.However, once diagnosed, Jason Raubach had to wait two and a half years before he could receive coverage under Medicare, health insurance for those 65 years and older or those with qualifying disabilities. But Elizabeth Raubach, along with dozens of other caretakers for people diagnosed with Alzheimer’s, called on Congress in a letter to eliminate the 29-month waiting period required for those under the age of 65 to receive coverage under Medicare. ...

Revolutionizing health in South Florida: The benefits of IV therapy and inclusive hospice care South Florida Reporter; by southfloridareporter.com; 6/8/25 ... South Florida is known for its multicultural population, making the expansion of hospice care to diverse groups particularly significant. Traditionally, certain cultural or community groups may have had hesitations or lacked access to hospice care due to language barriers, cultural misunderstandings, or lack of awareness. Increasingly, hospice organizations are focusing on outreach and education within these communities, breaking down barriers and encouraging patients and families to consider hospice as a valuable option for quality end-of-life care. 

A special tribute given to a special nurse Scottsdale Progress, Scottsdale, AZ; by Lin Sue Flood; 6/7/25 One of the original founders of Hospice of the Valley back in 1977 recently received an extraordinary visit from the Arizona Nurse Honor Guard, an organization that honors fellow nurses who have dedicated their lives to the profession. “I am just flattered and overwhelmed,” said Mary Audrey Mellor, who turns 92 in July. “Hospice of the Valley has always had my heart because it’s so compassionate and caring and loving.” Friends and family gathered together at her home at Vi at Silverstone in Scottsdale as she received a Florence Nightingale coin symbolizing comfort, gentleness, courage and an unwavering devotion to duty. Nurse Honor Guard volunteer Cindy Loucel then presented her with a second gift. “We have a quilt to cover you with our love and gratitude and to recognize all those patients you covered in kindness,” she said. “May it bring you comfort, as you gave so many others comfort.”

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.

Hospices facing a US caregiving ‘crisis’ Hospice News; by Holly Vossel; 6/2/25 Family caregivers in the United States are being challenged by a swelling aging population inneed of greater support and stronger policy infrastructures. Much room for improvement exists at both state and federal levels when it comes to recognizing the important roles that family caregivers play, according to Steven Lee, co-founder and CEO of ianacare, a Boston-based patient and caregiver resource company. More innovative care models and disease-specific reimbursement options have widened pathways for hospice providers to improve family caregiver support, Lee said in a recent Hospice News Elevate podcast. But these fall short of addressing the diverse scope of practical, emotional and financial needs, he stated. Editor's note: This article has an excellent map of US states with caregiver categories for "Well-Supported," "Safe for Now," "High Risk," and "Critical" (courtesy of Otsuka America Pharmaceutical). Additionally, our sponsor Hospice Analytics provides the National Hospice Locator, for caregivers/families to find hospices that serve in each US county, and sorted by their quality scores. And, our sponsor Composing Life equips hospice organizations with caregiver/family video libraries that span the continuum of serious illness, hospice, and grief care. 

Hard conversations, celebrations accompany AANHPI Heritage Month Public News Service; by Roz Brown and Suzanne Potter; 5/30/25 Asian Americans, Native Hawaiian and Pacific Islanders are a rapidly growing population in California and across the nation - but as they age, research indicates they're less likely to use hospice care or be familiar with end-of-life options. Nationwide, the group makes up about 6% of the population - and 15% in California - but like many minorities, they face greater health-care disparities. Ben de Guzman, director of the Office on Asian and Pacific Islander Affairs in the Washington, D.C., mayor's office and the son of Filipino immigrants, said cultural beliefs can hinder conversations about death and dying, and language also is a barrier.

Finding Solutions: Local group makes flowers for everyone WRDW-12 & WAGT-26, Augusta, GA; by Zayna Haliburton; 5/21/25 Flowers are something that can put a smile on someone’s face, whether you’re receiving or giving them. For one local group, they’re making bouquets to bring to nursing homes, shelters and hospitals. They’re now finding solutions in asking the community to consider donating their leftover flowers from weddings and events in order to brighten someone else’s day. “These are going to go to hospice patients that a part of Enhabit Augusta, ..." said Patricia Proctor, co-owner of El Rey and founder of non-profit Corazón Bonito ... which translates to "beautiful heart" in English. 

[Australia] Overtreatment of older people near end of life: A qualitative scoping review of modalities, drivers, and solutionsOmega-Journal of Death and Dying; Samantha Fien, Emily Plunkett, Daniel Wadsworth, Magnolia Cardona; 4/24This study aimed to understand the drivers better to help minimise further risks of overtreatment for older people near the end of life (dysthanasia). Determinants included healthcare system factors, patient-centered care, family and caregiver, and clinician perspectives. This review confirms that despite almost two decades of recognition of the potential harms of overtreatment near the end of life, society, patients, and health systems have a role to play in reducing and addressing the determinants. We offer a range of solutions for clinicians, health service managers, and members of the public to consider.

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.”

Dying ‘Beautifully’ in the Rio Grande Valley: Rivera-Burciaga embeds end-of-life nursing into UTRGV curriculum: National Nurses Week is May 6-12 UTRGV, The University of Texas Rio Grande Valley - The Newsroom, Rio Grande Valley, TX; by Karen Villarreal; 5/9/25 Death, for the most part, makes people uncomfortable. But not UTRGV’s Dr. Andrya Rivera-Burciaga.  After a personal loss early in her nursing career drove her to seek advanced certification in hospice and palliative care, she has made it her life’s work to normalize conversations about death and dying.   ... While Rivera-Burciaga’s efforts successfully have woven palliative care into the UTRGV nursing curriculum, her Ph.D. research on the unique cultural perspective of death and dying among Mexican Americans aims to further tailor the care that nurses provide to end-of-life patients in South Texas.  ... Through clinical interviews, Rivera-Burciaga found that many individuals of the Mexican American culture are afraid to die – despite engaging in Día de los Muertos, a celebration of death every November. “We've built a compassionate community for the dying, yet we don't say it by name. Many Mexican Americans in the United States believe that to talk about death invites it. Or, that we don't have time to be depressed, or that even in mourning men don't cry,” she said.

Think you know what nursing research looks like? Think again Boise State News, Boise, ID; 4/30/25 “Research” doesn’t just mean generating new discoveries through experimentation. Boise State supports Boyer’s model of scholarship, which expands the definition of research and creative activity to include applying and integrating knowledge into other settings, as well as teaching it. ... [An] interdisciplinary team is working to improve hospice and palliative care for refugees. ... Clinicians and refugees often do not share common cultures, languages or communication norms, so [Kate] Doyon has been building a community advisory board to create a communication guide. They’re working with stakeholders–including refugees and providers–to develop prompts that will enhance the care refugees receive, starting on the level of communication. Ornelas said the refugees they interviewed “gave us a lot of insight on different cultures and how we can go about and make prompts.” The prompts are short phrases to remind the healthcare team of best ways to interact with refugees and productively approach conversations.

By the Bay forges educational partnerships to grow hospice, home-based care workforce Hospice News; by Holly Vossel; 4/23/25 By the Bay Health has launched a new career program that aims to build up the next generation of home-based health care professionals amid widespread workforce shortages. The California-based health system unveiled its educational initiative, Pathways to Care Careers, in December 2024 as part of its 50th anniversary commemoration. The program is a collaboration with local schools and community organizations. By the Bay Health recently began a $1 million fundraising campaign to support the expansion of the career initiative. A main goal is to reach an increasingly diverse range of health care workers further upstream in their educational journeys, said Robertina Szolarova, chief administrative officer at By the Bay Health and program lead for its Pathways to Care Careers initiative.