Literature Review

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.

Providing support to children during the loss of an important adult in the ICUIntensive Care Medicine; Ruth Kleinpell, Bénédicte Gaillard-Le Roux, Jozef Kesecioglu; 5/25Research on bereavement care in the ICU has demonstrated associated benefits, including facilitating emotional adjustments, meaning-making, and resilience. As Rowland and colleagues highlight, helping children process information effectively without feeling overwhelmed is important, as they need supportive adults to provide honest, developmentally appropriate explanations. The strategies highlighted in their narrative review can help ICU clinicians to tailor bereavement care for children to support them through the loss of an important adult in the ICU.

Sex and racial/ethnic differences in end-of-life care preferences in persons with Parkinson's Disease and related disordersMovement Disorders; Whitley W Aamodt, Lynn Eickholt, David G Coughlin, Lisa Solomon, Katharine A Rendle, Carly Marshall, Joaquin A Vizcarra, Nabila Dahodwala; 5/25In persons with Parkinson's disease (PD) and related disorders (PDRD), rates of end-of-life (EoL) hospitalization are greatest, and rates of hospice utilization lowest, among men and persons of color. In adjusted models, women with PDRD were more likely than men to prefer religious/spiritual support at the end of life. Compared with White participants with PDRD, non-White participants were more likely to consider EoL hospitalization, less likely to consider medical aid in dying, and less familiar with palliative care. In four focus groups involving 14 questionnaire respondents, contributors to EoL decision-making included medical knowledge/information, personal experiences, family dynamics, religion/spirituality, and resources/cost. Conclusions: EoL care preferences differ by sex and race/ethnicity in persons with PDRD. These preferences are influenced by multiple factors and may contribute to differential EoL outcomes, emphasizing the need for individualized, culturally competent EoL care. 

Trends in home health care among traditional Medicare beneficiaries with or without dementiaJAMA Network Open; Rachel M. Werner, MD, PhD; Seiyoun Kim, PhD; R. Tamara Konetzka, PhD; 5/25In the US, nearly 7 million people live with Alzheimer disease and other dementias, a number that is expected to increase as the population ages. Although many people with dementia live in nursing homes or other institutional settings, institutional use is decreasing, and a growing majority of people with dementia are opting to live at home and receive care in the community. Home-based care is typically consistent with most people’s preferences and may be particularly important for those with dementia, as institutional settings and transfers can be stressful and disorienting.

Global adoption of value-based health care initiatives within health systems-A scoping reviewJAMA Health Forum; Ayooluwa O. Douglas, MD, MPH; Senthujan Senkaiahliyan, MHSc; Caroline A. Bulstra, DVM, MHSc, PhD; Carol Mita, MS; Che L. Reddy, MBChB, MPH; Rifat Atun, MBBS, MBA; 5/25The value-based health care (VBHC) framework was introduced in the US in 2006 to combat rising health care expenditures that failed to produce improvements in patient quality, safety, and outcomes over the past decades. The framework focuses on 6 elements: (1) organizing care around medical conditions, (2) measuring outcomes and costs for every patient, (3) aligning reimbursement with value through bundled payments, (4) integrating care systems regionally, (5) establishing national centers of excellence for complex care, and (6) using information technology systems to support these elements. This scoping review of 50 initiatives found that the implementation of VBHC globally is still in its early stages, with published scientific literature pointing to small-scale institutional-level implementation within individual departments and hospitals. Large-scale implementation designed to develop high-value health systems is limited.

American Geriatrics Society position statement: Making medical treatment decisions for unrepresented older adultsJournal of the American Geriatric Society; Joseph D Dixon, Aruna V Josyula, Noelle Marie Javier, Yael Zweig, Mriganka Singh, Luke Kim, Niranjan Thothala, Timothy W Farrell; 5/25This paper is an official position statement of the American Geriatrics Society (AGS) and updates the 2017 AGS position statement, Making Medical Treatment Decisions for Unbefriended Older Adults. In this updated position statement, the term "unbefriended" is replaced by "unrepresented" as a term that is more value-neutral, more accurately describes the circumstance in which a person without medical decision-making capacity does not have recognized surrogate representation, and better aligns with increasingly preferred terminology as reflected in recent medical literature. We define unrepresented older adults as those who (1) lack decisional capacity to provide informed consent for a particular medical treatment, (2) have not executed an advance directive that addresses the medical treatment at hand and lack capacity to do so, and (3) lack representation from a surrogate decision-maker (i.e., family, friend, or legally authorized surrogate).  The process of arriving at treatment decisions for this population should follow standards of procedural fairness and include capacity assessment, search for potential surrogates, team-based efforts to determine the patient's values and preferences, and steps to guard against bias. Proactive measures are needed to identify older adults at risk for becoming unrepresented. This position statement also calls for national efforts to reduce state-to-state variability in legal approaches for unrepresented patients.

[Canada] Health leaders’ perspectives and attitudes on medical assistance in dying and its legalization: A qualitative studyBMC Medical Ethics; Amanda Yee, Eryn Tong, Rinat Nissim, Camilla Zimmermann, Sara Allin, Jennifer L Gibson, Madeline Li, Gary Rodin, Gilla K Shapiro; 5/25This study highlights the wide-ranging and complex attitudes health leaders may hold towards MAiD [Medical Assistance in Dying] and identifies the convergence of multiple factors that may have contributed to the legalization of MAiD in Canada. Participants identified six factors that they believed to have led to the introduction of MAiD in Canada: public advocacy and influence; judicial system and notable MAiD legal cases; political ideology and landscape; policy diffusion; healthcare system emphasis on a patient-centred care approach; and changes in societal and cultural values. Participants expressed wide-ranging attitudes on the legalization of MAiD. Some described overall agreement with the introduction of MAiD, while still raising concerns regarding vulnerability. Others held neutral attitudes and indicated that their attitudes changed on a case-by-case basis. Participants described four factors that they considered to have had influence on their attitudes: personal illness experiences; professional experiences and identity; moral and religious beliefs; and, the valence of patient autonomy and quality of life.

Corby boy, 10, set for Arctic trek in tribute to fatherBBC News, by Kate Bradbrook & Brian Farmer; 2/2/24, published in our newsletter 2/2/24 and 12/24/24A 10-year-old boy once told he might never walk can look forward to days of "wonder" as he prepares to trek in the Arctic in memory of his late father. Caeden, who has cerebral palsy, was born 12 weeks early. But Caeden, of Corby, Northamptonshire, has climbed Ben Nevis and is now set to meet the Arctic challenge. Mountain guide John Cousins said the "biggest danger in such conditions comes from the cold". Caeden is due to travel to Sweden on Monday with mother Lisa, brother Ashton, 12, and sister Khya, 14.

Healing hearts: How palliative care staff reunited a father with his daughters after nearly 40 years apart The Daily Scan - Cancer; by Sondi Bruner; 11/25/24, published in our newsletter 11/25/24Leah Duval and Tanya Ellis don’t have many childhood memories of their father. They recall fragments, like his bright smile and building snowmen in the backyard. And then one day, when they were three and five years old, Glenn Ellis disappeared completely. ​As the girls grew up, they learned their father had schizophrenia, which they guessed played a large role in his disappearance. ... The family searched for years in the 1980s and never found him. The sisters had no choice but to move forward with their lives, though they never gave up hope that their father was still out there. ... Then, on May 14th 2024, nearly 40 years after their father vanished from their hometown in Ontario, Tanya received an unexpected phone call from across the country. It was from Siobhan Gallagher, a social worker at May’s Place Hospice in Vancouver, BC. She had a patient named Glenn Ellis, and he was looking for his daughters. [Click on the title's link to read this story.] ... “People can hold onto grudges for their entire life and they don’t allow healing to happen,” says Tanya. “Have an open heart and an open mind. Just let things go, because we’re just all humans trying to do the best we can in this world.”

Grandad rehearsed his funeral 10 years ago – Now his final wishes come true after his passing Good News Network; 7/28/24; published in our newsletter 8/1/24A British senior who pre-planned his funeral and rehearsed it on TV in 2013, had his final wishes come true after peacefully passing away in June. Malcolm Brocklehurst, who is a renowned aircraft expert, commissioned an orange airplane-shaped coffin ten years ago from Crazy Coffins, an offshoot of a Nottingham-based traditional coffin and urn maker in England that helps people customize their funeral. The grandfather-of-nine was filmed sitting in the coffin on Channel 5’s Bizarre Burials, which also featured a rehearsal of the ceremony that the former aerospace engineer coordinated to the last detail. The plane was aptly called Tango One and numbered with MB 1934—his initials and year of his birth. He also announced that he wanted the funeral procession to leave from the stadium pitch where his favorite football team, Blackpool FC, plays. ... But speaking about the rehearsal in 2013, he said it was all “light-hearted fun.” 

Families, volunteers share stories of finding peace through hospice: Hospice "allowed her to just be a daughter to her father as he was dying" Salina Post; by Cristina Janney, Hays Post; 6/29/24; posted in our newsletter 7/2/24This is a two-part series on hospice care in northwest Kansas. Dalene Juenemann and her father, Dean, had to make the difficult decision to enter hospice care after he was diagnosed with bladder cancer. “He was just such a social guy and someone was in a couple times a week,” she said. “They were checking in on him and it was that security blanket he had.” ... He didn’t want to go through aggressive chemo and he didn’t qualify for a bladder removal because of his age. “He chose quality of life,” she said. "It was that final decision that we are done with everyone wanting a piece of me. I'm just going to enjoy life," she said. Dalene's father, Dean Shearer, was a patient of NWKareS, Hospice of Northwest Kansas, which serves 16 counties from Interstate 70 to the Nebraska border and Trego County to the Colorado border. ... She said the extra care hospice offered allowed her to just be a daughter to her father as he was dying. [Click on the title's link to continue reading stories from families and volunteers at NWKAreS.]

Bo-Hawg & Evermore, a love story & a fish fry: A deep-fried meaning found in grief Evermore Newsletter - "Community, Family, Grief"; 6/9/25 Grease popping, no breeze, standing in direct sunlight, lifting coolers with 50 pounds of grouper, hands coated in cornmeal and batter, and a heat index of 107. Ah, those were the days. That’s what it was like cooking seafood with my pops. My man LOVED this. A big reason is because he did this with his dad growing up. Later in life they began volunteering their services (and fish) as a way to help raise money for youth sports in our hometown. They would fry grouper, boil peanuts, boil shrimp — you name it, they did it. So, it was only natural that my siblings and I grew up sharing this tradition with him.  ... [Click on the title to continue reading this inspiring father-son story about both volunteering and coping with grief.]