Literature Review

Behavioral symptoms and treatment challenges for patients living with dementia: Hospice clinician and caregiver perspectivesJournal of the American Geriatrics Society; Karolina Sadowska BA; Molly Turnwald BA; Thomas O'Neil MD; Donovan T. Maust MD, MS; Lauren B. Gerlach DO, MS; 12/24Dementia affects one in three older adults over age 85 and individuals with dementia constitute the fastest growing population of patients entering hospice care. While cognitive impairment is the hallmark of dementia, behavioral symptoms are reported in nearly all patients with advanced dementia, contributing to both the complexity of end-of-life care and caregiver burden. Behavioral symptoms of dementia are highly prevalent among the US hospice population and are often managed with psychotropic medications prescribed off-label. There are limited treatment guidelines in this population, so the appropriate risk and benefit balance may be highly individual. This qualitative study can help to inform the decision-making of hospice clinicians and caregivers regarding anticipated behavioral changes and limitations of treatment options in dementia end-of-life care. 

4 Benefits of palliative care at home: Personalized and coordinated medical care at home increases quality of life Psychology Today; by Bob Uslander, MD; 12/20/24 ... More than six million people in the U.S. could benefit from palliative care, and, according to the Center to Advance Palliative Care, thousands received it at home last year. Research shows that being cared for at home enhances quality of life because it is usually consistent with one’s life goals. ... 4 Benefits Palliative Care at Home Provides: ...

Mobile app–facilitated collaborative palliative care intervention for critically ill older adults-A randomized clinical trialJAMA Internal Medicine; Christopher E. Cox, MD, MPH; Deepshikha C. Ashana, MD, MBA, MS; Katelyn Dempsey, MPH; Maren K. Olsen, PhD; Alice Parish, MSPH; David Casarett, MD; Kimberly S. Johnson, MD; Krista L. Haines, DO; Colleen Naglee, MD; Jason N. Katz, MD, MHS; Mashael Al-Hegelan, MD, MBA; Isaretta L. Riley, MD, MPH; Sharron L. Docherty, RN, PNP, PhD; 12/24An automated electronic health record–integrated, mobile application–based communication platform that displayed family-reported needs over 7 days, coached ICU attending physicians on addressing needs, and prompted palliative care consultation if needs were not reduced within 3 study days. In this randomized clinical trial, a collaborative, person-centered, ICU-based palliative care intervention had no effect on palliative care needs or psychological distress compared to usual care despite a higher frequency of palliative care consultations and family meetings among intervention participants.

Mom, 26, dies days after choosing to enter hospice following 13 years of living with kidney failure (exclusive) People; by Zoey Lyttle; 12/18/24 Though she left behind a 4-year-old daughter, Sara Long told PEOPLE her feelings about death were "more certain" than they'd ever been when she started end-of-life care. “I think a lot of people spend a lot of time thinking about what it means to have a good life. And don't get me wrong, I did that too,” Sara Long, 26, told PEOPLE over the phone just shy of a week before she died at the hospice facility into which she had just recently moved. ... Long said she’s spent “the last two or three years” deliberating about her idea of a “good death.” She decided that it wasn’t just about how she would experience these last expected few weeks of her life in hospice. What Long really wanted was to be surrounded by her most precious loved ones — including her husband Justin, 32, and their 4-year-old daughter Riley Jean — but she didn't want them to watch her die while intubated and attached to hospital equipment as she was half of her life. “I just feel like if I pushed it any harder, then I was going to get to a place where it was going to be outside of my control,” said the mom of one. “I was going to wind up dying in a hospital alone, afraid, full of tubes, scared. My daughter wouldn't be able to be part of the process, and it would just be really lonely, and that's really not the goal.” Detached from the familiar yet foreign medical equipment, Long told PEOPLE she was freed from fear knowing she would only survive another couple of weeks in hospice. (She died with a week less than anticipated.) Editor's note: This another follow-up post to this profound young woman's story that we post on 

[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).

Characteristics of patients enrolled in hospice presenting to the emergency department American Journal of Emergency Medicine; by Kayla P Carpenter, Fernanda Bellolio, Cory Ingram, Aaron B Klassen, Sarayna S McGuire, Alisha A Morgan, Aidan F Mullan, Alexander D Ginsburg; 12/9/24, online ahead of print Emergency Departments (EDs) frequently care for patients with life-limiting illnesses, with nearly 1 in 5 patients enrolled in hospice presenting to an ED during their hospice enrollment. This study investigates the reasons patients enrolled in hospice seek care in the ED, the interventions they receive, and their outcomes. ... Patients enrolled in hospice most frequently presented to the ED for trauma [36%; with 15% for pain, 12% for catheter/tube malfunction]. Most received laboratory studies and imaging. Nearly half of patients were admitted to the hospital and short-term mortality was high, particularly for patients enrolled in hospice for needs for ED care? Ie.,

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.

The politics of loss: What grief reveals Psychology Today; by Daniela E. Miranda, PhD; 12/10/24 It has been a bit over two years since my 27-year-old brother unexpectedly passed away, exactly two weeks before my 64-year-old father, quickly and expectedly, died from cancer. What followed was a series of “secondary losses”. For my family, secondary losses included the shifting dynamics of caregiving and the emotional labor required to rebuild a daily life after multiple losses, while permanently uprooting to a different country. This article is not about my grief but about how the experience of loss can illuminate the fractures and possibilities within our systems of care. ... Key points:

What adult children should know when discussing their parents’ end-of-life care StudyFinds; by StudyFindsStaff, reviewed by Christ Melore; 12/8/24 Talking about death can be difficult for anyone at any time. For adult children who need to know their parents’ final wishes, it can be excruciating. A new survey is revealing the stark disconnect between our beliefs and actions when it comes to end-of-life planning. While an overwhelming 90% of adults recognize the importance of these critical conversations, half have yet to take the first step with their closest loved ones. ... The numbers tell a revealing story. Twenty-six percent of respondents simply keep putting off the conversation, while 23% admit they don’t know how to approach the topic. Sixteen percent are outright scared to broach the subject, creating a wall of silence around a universal human experience. ... When people do open up, the conversations prove surprisingly rich and multifaceted.

Dr. James O’Connell on caring for the homeless in Boston Simmons University, Boston, MA; by Simmons University; 12/6/24 “A mile from here, people are experiencing the same health disparities as they have in Third World countries,” said Dr. James O’Connell, founder and president of Boston Health Care for the Homeless Program (BHCHP) and Assistant Professor of Medicine at Harvard Medical School. ... In 1985, O’Connell was the founding physician of a program to support the people experiencing homelessness in Boston. The program received funding through a four-year grant from the Robert Wood Johnson Foundation and the Pew Charitable Trust. ... [Story about getting a homeless man into hospice care at a nursing home.] When [O'Connell] questioned him about hospice, Santo shared his perspective. “He told me, ‘I appreciate all you’ve done, but I didn’t know anyone there. I don’t want to die there. I want to die with my friends.’” After that, they arranged end of life care for Santo at the shelter. “I had never thought to ask him what he wanted,” said O’Connell. “I have since learned that I have to listen to what people want.” 

'I've already had my miracle': 26-year-old Savannah mom enters hospice care with only weeks to live ABC WJCL 22 News, Savannah, GA; by Savannah Younger; 12/4/24 As the holiday season begins, Sara Long, a 26-year-old Savannah woman, is entering hospice care after a prolonged battle with kidney failure. Now the wife and mother is preparing to say her final goodbyes to family and friends. "I wanted to make sure that everything's kind of ready to go for when family visits and all that kind of stuff," Long said. "So, I just want to make things as easy as possible for everybody." Long has been told she has two to three weeks left to live and is now preparing her family for her passing. ... Their daughter, Riley, 4, is too young to understand what is happening, but Long is creating a hope chest so Riley can always remember her. "There are probably dozens, if not hundreds, of letters at this point, to open at different various points in her life. So, like her first day of school all through, or a graduate degree, potentially," Long said. "I feel like I've already had my miracle," Sara said. "I feel like Riley is my miracle. ..."Editor's note: See our "Today's Encouragement" for today, with a beautiful quote from Sara Long, in this article.

Bloom Healthcare CEO: Integrating palliative care into every decision Hospice News; by Jim Parker; 12/3/24 The house call provider Bloom Healthcare has leveraged its integrated palliative-primary care model to achieve substantial reductions in hospitalizations and health care costs. The U.S. Centers for Medicare & Medicaid Services recently recognized Bloom as a top performing High-Needs Accountable Care Organization under the agency’s Realizing Equity, Access and Community Health (ACO REACH) model. Through its ACO REACH program, Bloom reduced unplanned hospital readmissions by 25% and realized a gross cost savings rate of 24.6%. The company’s patients averaged 326.7 days at home during  2023. Bloom Healthcare cares for about 10,000 high-needs patients with a comprehensive primary care and care management model that incorporates palliative care. The company currently operates in Colorado and Texas. ... Palliative Care News sat down with Bloom CEO Dr. Thomas Lally to discuss the strategies the company used to garner these results and how palliative care factored in. [Click on the title's link to continue reading.]

Ensuring equity in access to palliative care AJMC - The American Journal of Managed Care; by Laura Joszt, MA and Alexandra Gerlach; 11/28/24 Palliative care provides high-quality care that can provide relief from the symptoms of a serious illness, but just as there are issues to accessing cancer treatments, there are barriers to palliative care, as well as racial disparities in access, explained Nadine J. Barrett, PhD, MA, MS, FACCC, senior associate dean for community engagement and equity in research, Wake Forest University School of Medicine and Atrium Health, and current president of the Association of Cancer Care Centers (ACCC). ... There are misconceptions about what palliative care is that may limit the utilization of it, but also existing disparities mean fewer Black and Hispanic individuals access these services compared with their White counterparts.