Literature Review

Free Death Cafés provide a venue for difficult conversations The Northern Virginia Daily. Stephens City, VA; by Brian Brehm; 1/20/25... Blue Ridge Hospice, in partnership with Bowman Library, wants to spark the death-related conversations that many people want to have but are comfortable initiating. Starting this month, the two organizations will be hosting a Death Café on the fourth Thursday of every other month. ... According to a media release from Blue Ridge Hospice, “Death Café is not a grief support group or a counseling session, but rather a casual and welcoming space for people to reflect on death-related topics, with the aim of helping us live life more fully. Whether you’re curious, thoughtful or seeking meaningful conversation, come as you are and engage in this judgment-free, agenda-free discussion.”

Public healthAlzheimer's and Dementia; Stephanie Frilling; 12/24A Medicare Voluntary Advance Directive Framework (Framework) would enable the creation, storage, and sharing of advance directive documents, ensuring end-of-life care appropriately honors the individual and their care wishes, while supporting healthcare teams and family members in making care decisions for their patients and loved ones. With Medicare enrollment reaching over 65 million beneficiaries in 2023, and Alzheimer's becoming one of the most expensive conditions - CMS policy makers have a growing responsibility to improve care quality at end-of-life. 

My husband almost died. When I asked his doctor for help, I was appalled by the insensitive response. HuffPost; by Carrie Severson; 1/13/25 ... The physician’s assistant came in and looked at Gavin [the author's husband]. As soon as she took her seat, I told her I wanted to schedule him for a feeding tube, expecting her complete understanding and compassion. Instead, she laughed. “I recommended a consult for a feeding tube last week, and you declined it,” she said sharply. “Now I have to start over from scratch and reach back out to the GI team to see how we can get him in.” My mouth dropped open. I stared at her, bewildered. “I wasn’t ready last week. I’m ready now,” Gavin mumbled, barely audible. “What did he say?” the physician’s assistant snarled. I very calmly repeated what Gavin said, my heart breaking for him and rage racing through my body. “Well, you certainly have made my job harder. And now I’ll have to see what I can do for you. You’ll hear from me about your next steps, and you better follow them. It might be too late because of your attitude,” she barked. I leaned in, looked at her straight on, meeting her nasty tone, and said, “No. Your attitude has made this harder. And it’s very much not appreciated right now. He’s in pain, and your job is to help us. In fact, you took an oath to do no harm, and what you’re doing in this room is harmful.” ...

A call to action for revisiting goals of care discussions with adolescents and young adults with cancerJAMA Network Open; Erica C. Kaye, MD, MPH; 12/24In “Evolution in Documented Goals of Care at End of Life for Adolescents and Young Adults With Cancer,” Mastropolo et al addresses an important and understudied question regarding whether and how goals of care (GOC) change for adolescents and young adults (AYAs) with cancer as death approaches. Intuitively, the study findings showed that AYAs with cancer had increased documentation of palliative GOC as they approached end of life. More specifically, 1 in 5 AYAs had GOC documentation that transitioned from nonpalliative goals in the early or middle periods to palliative in the final 30 days before death. While perhaps unsurprising, the clinical relevance of this finding is significant: a sizeable minority of AYAs may change their GOC during the final weeks of life, underscoring the importance of revisiting GOC conversations as death approaches to align medical interventions with a patient’s wishes. 

Human composting is rising in popularity as an earth-friendly life after death CNN; by Ella Nilsen; 12/29/24 The first time Laura Muckenhoupt felt a glimmer of hope after the death of her 22-year-old son Miles was the drive home from the Washington state facility that had turned his body into hundreds of pounds of soil. There was an empty seat in the family pickup truck where Miles should have been sitting. But riding with her husband and daughter on the 12-hour drive home, Laura felt her son’s presence clearly. ... Human composting turns bodies into soil by speeding up “what happens on the forest floor,” according to Tom Harries, CEO of Earth Funeral, the human composting company the Muckenhoupt family worked with. “What we’re doing is accelerating a completely natural process,” Harris told CNN. Human composting is emerging as an end-of-life alternative that is friendlier to the climate and the Earth — it is far less carbon-intensive than cremation and doesn’t use chemicals involved to preserve bodies in traditional burials.

We studied 20 places around the world and found the most common diseases linked with voluntary assisted dying Medical Xpress; by Eliana Close and James Downar, The Conversation; 12/18/24 As of 2023, 282 million people lived in regions where voluntary assisted dying is legal. Jurisdictions such as the Netherlands, Belgium and Oregon have had these laws in place for decades. Other countries, including Canada, Spain, New Zealand and Australia, have passed reforms more recently. ... Debates about voluntary assisted dying are often highly polarized. Understanding the factors driving assisted dying is essential for evidence-based debates and for improving care for people with serious conditions. In a recent study, we examined data from people accessing voluntary assisted dying in 20 jurisdictions around the world. In particular we looked at what diseases they had. ...  With an international team of researchers, we looked at the role disease plays in voluntary assisted dying. We analyzed publicly available data from 20 jurisdictions in eight countries between 1999 and 2023. Overall, most people who accessed voluntary assisted dying had cancer (66.5% of cases). Neurological diseases were the second most common (8.1%), followed by heart (6.8%) and lung (4.9%) conditions. 

[Canada] First reading: Hundreds seeking death due to loneliness — inside Canada’s new MAID figures National Post, Toronto, Ontario, Canada; by Tristin Hopper; 12/13/24 [Health Canada has] released the official figures on medical assistance in dying (MAID) deaths in 2023. The Fifth Annual Report on Medical Assistance in Dying in Canada, published on Wednesday, reveals that one in every 20 Canadian deaths is now due to assisted suicide. There were 15,343 total MAID deaths in 2023, the median age ... was 77.7 years, and 622 people received MAID for a non-terminal illness. ... The growth rate [in Canada] remains higher than anywhere else. ... Half of non-terminally ill people applying for MAID report being lonely. When applying for MAID, patients are asked to detail all the types of suffering they’re experiencing in order to determine if their condition qualifies as something “grievous and irremediable” — and thus eligible for death. Health Canada’s report reveals that 47.1 per cent of non-terminally ill Canadians who applied for MAID reported “isolation or loneliness” as one of the causes of their suffering. This was significantly higher than the number of terminally ill applicants who said the same (21.1 per cent).

Advance care planning, end-of-life preferences, and burdensome care-A pragmatic cluster randomized clinical trialJAMA Internal Medicine; Jennifer L. Wolff, PhD; Danny Scerpella, MPH; Erin R. Giovannetti, PhD; David L. Roth, PhD; Valecia Hanna, MS; Naaz Hussain, MD; Jessica L. Colburn, MD; Martha Abshire Saylor, PhD; Cynthia M. Boyd, MD; Valerie Cotter, DrNP; Maura McGuire, MD; Christine Rawlinson, MSN, RN; Danetta H. Sloan, PhD; Thomas M. Richards, MS; Kathryn Walker, PharmD; Kelly M. Smith, PhD; Sydney M. Dy, MD; for the SHARING Choices Investigators; 12/24Advance care planning (ACP) is a communication process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. In this pragmatic cluster randomized clinical trial, the SHARING Choices intervention increased new documentation of end-of-life preferences but also increased potentially burdensome care at end of life. Mixed findings underscore the importance of comprehensive support for those with serious illness and prioritizing patient-relevant outcomes in ACP interventional research. 

Watch: ‘Going It Alone’ — A conversation about growing old in AmericaKFF Health News; by Judith Graham; 12/11/24 KFF Health News’ “Navigating Aging” columnist, Judith Graham, spent six months this year talking to older adults who live alone by choice or by circumstance — most commonly, a spouse’s death. They shared their hopes and fears, challenges, and strategies for aging solo. Graham moderated a live event on Dec. 11, hosted by KFF Health News and The John A. Hartford Foundation. She invited five seniors ranging in age from 71 to 102 and from across the country — from Seattle; Chicago; Asheville, North Carolina; New York City; and rural Maine — to talk candidly about the ways they are thriving at this stage of life.

HSPN Staffing Summit: Leveraging technology for person-centered care Hospice News; by Sophie Knoelke; 12/9/24 This article is sponsored by CareXM. This article is based on a virtual discussion with Kathleen Benton, President and CEO of Hospice Savannah. ... Dr. Benton has a master’s degree in medical ethics and a doctorate in public health. She has offered and reviewed many publications relevant to the topics of palliative care, ethics, hospice, and communication. [Dr. Benton:] I was schooled in clinical ethics and really mediating ethical dilemmas in health care. Looking at, is this in the best interest of the patient? Are we truly following the patient’s wishes? Many of the dilemmas, I would say a good 90%, occur at the end of life. ... [At] the root of [really trending] cases was one missing element. That element was the lacking area of communication. What do I mean by that? I believe that health care does the worst job of probably all other areas of communicating with folks. We have really taken what it is to be human out of what it is to treat a patient and a person. [Click on the title's link to continue reading this insightful discussion.]

Key differences between palliative and hospice care in California Psychology Today; by Bob Uslander, MD; 12/3/24 ... Key Difference Between Palliative and Hospice Care in California: Whether you’re looking for support early in an illness or need end-of-life care, Californians have resources available to help. California also has some unique programs and resources, such as palliative care programs for people covered by Medi-Cal, California’s Medicaid program. Additionally, California has strict laws to protect patients’ rights, ensuring that people are fully informed about your care options and can make choices that align with your personal values and cultural beliefs. Below are some of the key differences highlighted to help you make the best choice possible for you and your family when the time comes. [Click on the title's link for more information.]Editor's note: Through recent years, too many hospice agencies have eliminated references to end-of-life care, a life-expectancy of six months or less, and references to dying, death, or grief. Various fraud and abuse cases have described that persons/caregivers did not even realize they had signed up for "hospice" care. Ethically, this is untenable. Key differences between palliative and hospice care--with applications to the person--are significant.

Nurse diagnosed with blood cancer fulfills dying wish to see new ‘Wicked’ movie Fox 13 Tampa Bay, FL: by Jennifer Kveglis; 11/26/24 A Tampa Bay area nurse who was diagnosed with blood cancer had one dying wish – to see the new movie "Wicked" in theaters. With the help of friends and family, that wish was fulfilled on Monday. Misty Steffen is a wife and mother, and she was also HCA Florida South Shore's chief of nursing. "I've loved every day of my life being a nurse," she said. "Twenty-six years that I got to be one and serve and love and decrease anxiety and increase trust and explain." ... [Description of her serious illness trajectory ...] "It's not what I thought would be the end of my story, but I'm at peace knowing whether I live or whether I die," she said. Steffen said she, her daughter and her husband always sang songs from "Wicked" in the car. Together, they've seen the musical on Broadway twice. Her last wish was to see the new movie in theaters. "The next thing I know he's [her husband] rented out the whole room in the theater," she said. HCA Florida Brandon paramedics, where Steffen worked too, as the assistant chief of nursing, transported her in their ambulance at no charge. "He's like we've got people who are going to come take you in an ambulance to ‘Wicked,’" she said. "I just started balling and I go...'what? Why am I so deserving of that?'" Steffen will spend the coming days surrounded by loved ones, many of whom flew in from all over the country. Editor's note: While this story appears to be focused on the movie "Wicked," it's more about relationships, meaning-making, quality of life, and ... her husband rented out the "whole room in the theater"! If you--like I--enjoy this movie weekend, Misty Steffen's story gives a new meaning to giving thanks, creating new memories from old for now and ahead. From Part 2 of Wicked, "... because I knew you, I have been changed for good."

How to start the most difficult conversation in the world this holiday season EIN Presswire, Philadelphia, PA; by Cremstar; 11/25/24 According to a Caring.com Survey only 32% of Americans have a will. This Thanksgiving take advantage of this year’s holiday gatherings to plan for the inevitable. ... “There isn’t one right way to approach this topic. It really depends on the person you’re talking with,” says J.G. Sandom, CEO of Cremstar, a leading online cremation service. For example, if you know your person doesn’t like to be taken by surprise, give them a heads up, says Kate DeBartolo of the Conversation Project, an initiative of the Institute for Healthcare Improvement. Planning a visit with your parent(s)? Let them know beforehand that this topic is on your mind and that you’d like to talk about it with them. This gives them the opportunity to think about what they want, if they haven’t already. Here are Four Tips to ensure a successful dialogue: