Literature Review

Study raises questions about GUIDE model’s helpfulness for caregivers of loved ones with dementia McKnights Home Care; by Adam Healy; 4/1/25 The Guiding an Improve Dementia Experience may need to be fine-tuned to better serve caregivers of those living with dementia, according to a new study published in Alzheimer’s & Dementia. The researchers identified 565 older adults and 555 caregivers eligible for GUIDE using data from the 2022 National Health and Aging Trends Study and National Study of Caregiving. They found that approximately half of GUIDE-eligible people with dementia received care from two or more caregivers, and about a third of these caregivers reported experiencing high caregiving strain. [Continue reading ...] 

Dana Trabulsy bill aims to help families get death certificates faster Florida Politics; by Gabrielle Russon; 3/27/25  'This will solve a problem and be able to help these families move on sooner with the things that they need to do to start healing.'Families whose loved ones die in hospice are often stuck waiting for death certificates because of a backlog. One lawmaker wants to speed up the process to help them get the documents they need. Fort Pierce Republican Rep. Dana Trabulsy is pushing a bill that would allow advanced practice registered nurses providing hospice care to sign death certificates with a physician’s protocol. HB 647 passed its first committee stop Thursday with a 17-0 vote in front of the Health Professions and Programs Subcommittee.

New musical asks, 'How do we deal with the end?' (with a singalong)Edge Media Network; by Kilian Melloy; 3/25/25 Worcester, Massachusetts natives and brothers Daniel Lazour and Patrick Lazour started making theater when they were still kids, ...  "It was a really beautiful coming together of the whole [theater] community to do these shows," Daniel adds. That communal spirit lives on in the brothers' latest work, "Night Side Songs," a production of the American Repertory Theater that's scheduled to play ... from March 27 – April 6 [and] April 8 - 20. Bringing audiences together for a full-length play that makes singing an integral part of the experience – the songs are written to be easy for the audience to sing and to participate in performing, much like hymns at a church service, the brothers say – "Night Side Songs" makes a cathartic shared experience from the story of Yasmine (Brooke Ishibashi), a woman facing cancer and chemotherapy but finding love, meaning, and her own voice as part of the journey. [Continue reading ...] 

Executive producer Bradley Cooper's film Caregiving to premiere on PBS for nationwide broadcast June 24, streaming begins May 27ABC WHTM-27, Harrisburg, PA; 3/20/25 PBS and WETA Washington, DC, today announced that Caregiving, the documentary created with executive producer Bradley Cooper highlighting the challenges and triumphs of caregiving in America, will premiere Tuesday, June 24, 2025 at 9 p.m. ET on PBS (check local listings), and on the PBS YouTube Channel. Caregiving will be available to stream on PBS.org and the PBS App beginning Tuesday, May 27, 2025. Award-winning actress Uzo Aduba (The Residence, Painkiller, Orange is the New Black) was also announced as the film's narrator, bringing her own experience as a caregiver for her mother to the project. The two-hour documentary is centered on the personal experiences of caregivers providing for loved ones, and the challenges and triumph they face each day. These stories are interwoven with the broader context of the cultural and economic conditions in the U.S., leading to a care system tipping into crisis. [Continue reading ... including "Bradley Cooper Invites the Public to Share Their Caregiving Story]

Mt. Hood Hospice to present third Grief Made Visible art exhibit in April Sandy Post, West Linn, OR; by Brit Allen; 3/23/25 Aside from in-home hospice services, Mt. Hood Hospice offers numerous other resources to the community, regardless of income or if they have any other ties to the organization. Among them are grief support groups that utilize art as a tool of healing. As a result of these groups, 16 artists will have the art that they created in these groups on display at AntFarm Café & Bakery, 39140 Proctor Blvd., throughout the month of April, from April 3-30, while the cafe is open. ... “This art show creates a space that normalizes talking about mental health and grief,” said Mt. Hood Hospice Bereavement Services Director Laura Lirette. “In a culture where grief is often experienced alone and behind closed doors, our hope is that this exhibit will invite conversations about grief and supporting grievers.”

The Stanford Letter Project helps you discuss your end-of-life wishesKALW 91.7 FM - Your Call, Bay Area, CA; by Rose Aguilar and Nina Kissinger; 3/18/25 On this edition of Your Call, we discuss the importance of conversations, letters, and advance directives in communicating your end-of-life care wishes to loved ones and doctors. Although 92 percent of US adults say it's important to discuss their end-of-life care wishes, only 32 percent have had this conversation, and less than one-third have advanced-care directives in place. ... The Stanford Letter Project was designed to give you the tools you need to start the process. Dr. VJ Periyakoil, the founder and director of the project, shares her insights into making end-of-life care plans and resources to help guide you through the process. ... Resources [with links to the content]:

[Multi-cultural] Honouring traditions: Integrating cultural wisdom into palliative care - Saif Mohammed ehospice; by Saif Mohammed; 3/10/25[Personal Story] ... "Reflecting on this experience, I realize that caregiving is deeply embedded in tradition and culture, a natural extension of communal life." Caregiving is as old as humanity itself. One of the earliest known cases of palliative care dates back 45,000 years to Shanidar 1, a Neanderthal male found in present-day Iraq. His skeletal remains indicated severe injuries, yet he had survived for decades, suggesting that his community had cared for him. This example highlights that palliative care is a deeply human and historical practice, far predating modern medicine. Cultures around the world continue to recognize the importance of caregiving, often embedding it in traditions and religious beliefs. ... In some societies, the emphasis on independence can make caregiving more complex, as patients may refuse assistance to maintain self-sufficiency. ... Palliative care workers must be equipped to understand and respect the cultural traditions of the communities they serve. This requires training in cultural competence, which involves:

Understanding a patient’s AI medical journey The Hastings Center; by Ian Stevens, Erin William, Jean-Christophe Bélisle-Pion, and Vardit Ravitsky; 3/5/25As artificial intelligence becomes increasingly integrated into U.S. health care, patients should know the ways in which AI is being used in their care, concludes a new paper, “Bring a ‘Patient’s Medical AI Journey’ to the Hill.” Transparency is crucial for interactions between health care providers and individual patients, as well as for systemic level uses of AI, including:

Parting Stone celebrates serving 10,000 families with solidified remains service Business Insider, Santa Fe, NM; Press Release; 3/5/25Parting Stone, an innovative death care company transforming the way families memorialize loved ones, is proud to announce that it has served 10,000 families with its solidified remains service. … s more families choose cremation for a loved one or pet, they seek meaningful ways to navigate grief, Parting Stone has emerged as a trailblazer in reshaping the narrative around death and memorialization. By offering a new form of remains that resembles a collection of 40–80 smooth stones, the company is helping people find comfort and connection in the grieving process. Solidified remains are a complete alternative to conventional “ashes.” … The National Funeral Directors Association predicts that by 2030, nearly 80% of Americans will choose cremation over traditional burial. Editor’s note: Click on the title’s link to see a photo.

My mother and brother have terminal cancer. I'm worried I won't feel anything when they die. Business Insider; essay by Kimanzi Constable; 3/1/25 ... My brother was diagnosed with Cutaneous T-cell lymphoma (CTCL) three years ago, and my mother found out she had stage four lung cancer a year ago. I got a call earlier this year that the cancer was spreading, and I flew to spend time with them. I knew it would be hard seeing them battling late-stage cancer, but what I walked into was my brother in the Advanced Cancer Care Center, unable to move, and my mother wanting to hold an "end of life" planning meeting. It was worse than I anticipated. It was hard to see him not moving and the nurses having to help him do everything. My mother looked like she weighed 50 pounds ... I'm worried I won't feel anything when they pass away. ... I think it might be just another day when they pass away. I've been thinking — what does that say about me? Am I a bad person for not falling on the ground and losing it for over half of my family dying? Or is this nothingness an OK feeling due to the complicated relationship we've had most of my life? ... Editor's note: Leaders, welcome to the daily world of your clinicians, especially your social workers, chaplains, and grief counselors. Read this with openness to the normalcy of this author's conflicted relationships, emotions, thoughts, and empowered actions toward "not wanting to regret how I handled this opportunity to say goodbye more healthily."

How much does end-of-life care generally cost? 50 Plus Finance; by David Leto; 3/3/25 [For the public] ... Knowing how much end-of-life care generally costs can help you manage and prepare your finances appropriately to ease the burden on you and loved ones when the time comes. ... The cost of end-of-life care can vary widely depending on the services required. On average, however, Americans spend between $10,000 and $70,000 on such care, with the majority of expenses often occurring in the last year or month of life. These costs can stem from hospital stays, at-home care, or nursing facility care. Hospice, which focuses on comfort and pain management, typically costs less than intensive medical treatments but still averages several thousand dollars each month, or around $150 a day with insurance. Understanding these figures helps you set realistic financial expectations and prepare for them. ...

'Dear God, I need help on this one': How a prayer from Hildegard House's founder was answered ABC News WHAS-11, Louisville, KY; by Doug Proffitt; 2/27/25 Up from the dirt of an 1800's camelback style house on Story Avenue, in Louisville’s Butchertown neighborhood, Karen Cassidy has a plan. "We’re standing on the original dirt floor of the house, that’s the way they built things," she said. She's the former nurse who founded the Hildegard House 11 years ago. Hildegard is a place for the terminally ill to die in peace. With three private bedrooms and around the clock care, it’s a peaceful haven for people who have no home, or loved ones to care for them, so that they may die with dignity.  ... It is funded successfully and solely by both private donations and foundations. Now, in the new space, the plan is to build a refuge called the "Center for Care Giver Education" at the Story Avenue location. “This is for caregivers that are at home trying to maintain their loved ones at home," Cassidy said. ... At the new center they will teach families the basics. ... The owners of the historic Story Avenue house helped by cutting her a deal. She says they told her they would sell it to her $100,000 less than what they put it on the market for. Donations from foundations helped her buy the house with cash. But then, she got estimates for the renovation and restoration totaling $450,000. “I said 'dear God, I need help on this one,'” Cassidy said. Then God, from that prayer, appeared in a most modern way. ... “Two weeks later I got an email from an attorney who said, ‘Can you meet me for lunch? Somebody has left their estate to Hildegard House,'" she told WHAS11 News. "It was $450,000. That did it!” The out-of-the-heavens donation means they are funding the renovation, top to bottom with cash. Nothing will be owed. Cassidy later learned why that money came her way. “We had cared for someone’s mother and they were so grateful,” she said. Editor's note: I am honored to serve on the Board of Directors of the Hildegard House. I continue to be amazed at the profound care and superb systems envisioned, implemented and moved forward by Karen Cassidy, her staff, 80+ volunteers, the Board, and community support.