Literature Review

Family advocates for hospice care, says it doesn't always mean end-of-life: Highlights case of the late Former President Jimmy Carter who spent nearly 2 years in hospice CBS WTKR 3, Hampton Roads | Northeast NC; by Jay Greene; 12/20/24 Dana Romano's mom, Marilyn, headed home from the Dozoretz Hospice House of Hampton Roads in Virginia Beach on Monday evening after spending a few days in respite care while her family was out of town. "The whole reason not to have my mom in a facility is we want her with us. But when you're doing long periods of time, every once in a while, you need a break, so having a place where you know they're going to take care of her and treat her like, almost like family," Dana said. "We kind of look at this more like a resort than a hospice." ... When at home Marilyn receives hospice care, but it's not because she needs care, the Romano's said. It's because she needs supervision. ... The family told News 3's Jay Greene this is a case where hospice does not mean end-of-life. It actually helped alleviate some stress. ... The Romano's told News 3's Jay Greene hospice ["has no time limit"] is all about extending life as comfortably as possible, citing Former President Jimmy Carter who died at the age of 100 this weekend.Editor's note: These misunderstandings by the family about hospice care is both alarming and expected. Throughout Jimmy Carter's extended hospice Length Of Stay (LOS), far too many hospice organizations misused messaging for its marketing purposes. We have addressed this discrepancy in a dozen posts throughout the year. Click here for the CMS "Face-to-Face Requirement Affecting Hospice Recertification." Disclaimer: We do not specifics about what this hospice communicated with this family. We simply refer readers to this as publicly reported news story.

Virtual support for bereaved parents: Acceptability, feasibility, and preliminary efficacy of HOPE groupJournal of Palliative Medicine; Kristin Drouin, Amelia Hayes, Emma Archer, Elissa G Miller, Aimee K Hildenbrand; 12/24Hospital-based supports for families following the death of a child are rare. Our hospital's palliative care program offered a six-week closed virtual support group for bereaved parents five times between 2021 and 2024. In total, 36 parents (76% women) attended at least one group session and provided data. Participants endorsed high satisfaction with the intervention. This virtual support group was acceptable and feasible for bereaved parents. Additional research with larger, more diverse samples and more robust designs is needed.

AMA’s first chief health equity officer to depart at year’s end American Medical Association (AMA); by Staff News Writer; 12/30/24 Under Dr. Aletha Maybank’s direction and guidance, the AMA has become a relevant national voice on equity in medicine and an important ally to organizations that have long been committed to this work. ... [She] will depart the organization at the end of 2024 following a successful five-year and a half year tenure ... “Dr. Maybank has been a true champion and advocate for health equity both inside the AMA and in shaping our health system. She created a strong, strategic foundation for this work to continue over the long term,” AMA Executive Vice President and CEO James L. Madara, MD, said. ... During Dr. Maybank’s tenure, the AMA has provided a platform for the organization to engage in more open and honest conversations about its own past failings and exclusionary practices that have contributed to some of the inequities that persist in medicine today and has expanded education opportunities for physicians, residents and students in numerous ways, including: [Click on the title's link to read more.]

Evolution in documented goals of care at end of life for adolescents and younger adults with cancerJAMA Network Open; Rosemarie Mastropolo, Colin Cernik, Hajime Uno, Lauren Fisher, Lanfang Xu, Cecile A Laurent, Nancy Cannizzaro, Julie Munneke, Robert M Cooper, Joshua R Lakin, Corey M Schwartz, Mallory Casperson, Andrea Altschuler, Lawrence Kushi, Chun R Chao, Lori Wiener, Jennifer W Mack; 12/24Little is known about the nature of change in goals of care (GOC) over time among adolescents and younger adult (AYA) patients aged 12 to 39 years with cancer near the end of life. Understanding how GOC evolve may guide clinicians in supporting AYA patients in making end-of-life decisions. In this cross-sectional study of AYA patients who died of cancer, palliative goals were rarely documented before the last month of life, highlighting the need for timely and ongoing GOC discussions.

For young adults, caregiving isn't just hard. It can shape you for life. National Public Radio - CAI - Local NPR for the Cape, Coast & Islands; by Kat McGown; 12/23/24 ... There are days when Jordyn Glick, 27, can't eat or drink at all. She gets so tired and weak she can barely stand up. She has gastroparesis, where food stalls out in her stomach and doesn't get digested. It comes with unpredictable bouts of nausea, periods of agony in her guts, and malnutrition. ... Dakota Heath, her 26-year-old boyfriend of four years, is her watchman, "always picking up on the small things," he says. He's on alert for her next flareup, the kind that can leave her bedridden for a week. ... Young caregivers have always been there, doing all the same things that adults do — ... About one-quarter of all family caregivers are between 18 and 36, according to the National Alliance for Caregiving. One survey suggests that almost half of them are men. They're more likely to be Latino or Black; a survey in 2018 found that only 17% were white. They've just been invisible. "They fall into every potential crack that exists," says Melinda Kavanaugh, a professor of social work at the University of Wisconsin Milwaukee who is one of the few researchers who study this population. In terms of resources, "Nothing is targeted for a 22-year-old. Nothing."

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.

Palliative care, mental health services underutilized in pancreatic cancer Healio; by Jennifer Byrne; 12/19/24 Individuals with pancreatic cancer underutilized palliative care and mental health services, according to a retrospective analysis. ... Researchers from Saint Louis University used electronic health record data from Optum’s Integrated Claims-Clinical Data set to identify 4,029 patients with newly diagnosed pancreatic cancer. The investigators then used ICD-9/10 codes to identify subsequent diagnoses of anxiety and depression, as well as palliative care consultations. ... Results showed higher prevalence of anxiety (33.9% vs. 22.8%) and depression (36.2% vs. 23.2%) among patients who had palliative care consultations than those who did not have documented consultations. ... Healio: Did any of your findings surprise you? Divya S. Subramaniam, PhD, MPH: It was unexpected to see that palliative care consultations, despite identifying higher levels of anxiety and depression, did not increase treatment rates for these mental health conditions. This suggests mental health might not yet be a central focus in palliative consultations, which often concentrate on managing physical symptoms.

Torrie Fields on palliative care and serious illness innovations Teleios Collaborative Network (TCN); podcast hosted by Chris Comeaux; 12/18/24 In this episode of TCNtalks, host Chris Comeaux interviews Torrie Fields, Founder & Chief Executive Officer, TFA Analytics, about her journey in the field of palliative care.  Torrie shares her insights on the importance of palliative care, innovations in reimbursement models, and the lessons learned from implementing palliative care programs in California and Hawaii. The conversation highlights the urgency for hospice organizations to adapt to changing healthcare landscapes by innovating in the serious illness and palliative care space and the need for effective partnerships with payers. Torrie emphasizes the importance of articulating the unique value propositions of palliative care services and offers strategies for hospice leaders to thrive in the future.

Greater education needed to bring palliative care to cancer patients Hospice News; by Jim Parker; 12/18/24 Cancer patients generally need palliative care, but widespread misperceptions often stand in their way, both among the public and many clinicians themselves. This is according to Nadine Barrett, president of the Association of Cancer Care Centers (ACCC). The organization has been holding a series of webinars designed to better educate the oncology community about palliative care. The association is also in the process of studying racial and ethnic gaps in advance care planning, among other projects funded by its research arm, the ACCC Community Oncology Research Institute. Palliative Care News sat down with Barrett to discuss the barriers that cancer patients often experience when it comes to accessing palliative care. [Click on the title's link to read more.]

Palliative medicine for the community paramedic Journal of Emergency Medical Services (JEMS) - The Conscience of EMS; by Maurice Paquette; 12/17/24 The role of the paramedic is evolving. ... EMS has become a catch-all, a gateway into a somewhat—if not totally—fractured healthcare system. ... The landscape of healthcare is shifting as well. The pandemic, coupled with the realization of self-care, well-being, and mental health struggles has caused drastic reduction in the number of healthcare workers, and the amount of experience in skills that those healthcare workers carried with them. ... Over the past many years, we’ve seen a push for the idea of the community paramedic, as well as mobile healthcare. The establishment of a community paramedic program, especially in rural areas of the United States, would provide non-emergent care, under expanded scope and under the direction of a physician in the patient’s home.  According to a literature review in the International Journal of Paramedicine, the most common community paramedic program goals are to “aid patients in chronic disease management, reduce emergency department visits, reduce hospital admissions/readmissions, and reduce Healthcare costs.” Editor's note: Pair this with the article we posted yesterday, Characteristics of patients enrolled in hospice presenting to the emergency department.

Palliative care may improve quality of life for stroke survivors and their family members American Heart Association - Stroke News & Brain Health; by Newsroom; 12/16/24 Palliative care ... can help improve quality of life for stroke survivors as well as their family members, according to “Palliative and End-of-Life Care in Stroke,” a new scientific statement published today in the Association’s peer-reviewed scientific journal Stroke. ... The new statement complements the Association’s 2014 Scientific Statement on Palliative and End-of-Life Care in Stroke, which covered core palliative care competencies and skills for health care professionals who treat stroke patients. The statement includes strategies to improve communication about prognosis and goals-of-care, address psychosocial needs such as coping with loss, navigate complex health care systems and prepare for death with end-of-life care when necessary. It also highlights the substantial inequities that exist in palliative care after stroke across sociodemographic and regional characteristics and the need to reduce those disparities.