Literature Review

Palliative care consults in the Southeast: Lower readmissions despite increased length of stayJournal of Palliative Medicine; by Hillary E Davis, Heather Reed-Day, Erin W Jackson, R Eric Heidel, Justin Wolfe, Adam J Tyson; 3/25We aimed to understand how PC consultations in a southeastern program, affected by pandemic-related care delays, impacted common clinical performance metrics. Our cohort study using MS-DRG matching indicates that despite increased LOS, PC consultations were associated with significantly lower readmission rates. This suggests their potential to improve resource utilization, especially in regions affected by pandemic-deferred care.

Perspectives on the challenges of planning for and accessing long-term dementia care services through Medicaid and Medicaid WaiversJournal of Applied Gerontology; Justine Scattarelli, Kelly Moeller, Dana Urbanski, Marguerite DeLiema; 4/25 Formal long-term services and supports (LTSS) are essential to support older Americans with chronic conditions, such as Alzheimer’s disease and related dementias (ADRD). However, few older adults have saved enough to pay for LTSS, and navigating Medicaid eligibility criteria presents significant challenges. We conducted semi-structured, in-depth interviews with aging services professionals and caregivers of older adults with ADRD to assess challenges to planning for and accessing LTSS coverage through Medicaid and Medicaid waivers. Using concept mapping, three main themes were identified: (1) Proactive planning, (2) decision points, and (3) the application process. Participants described misconceptions about LTSS coverage, challenges with enrollment, and lack of information about eligibility affecting the LTSS planning trajectory. Results demonstrate a critical need for resources that help caregivers estimate costs and guide them through the eligibility determination, application, and spend down processes for Medicaid programs.

[Taiwan] Spiritual well-being of terminally ill patients and next-of-kin caregivers in hospice care: A quantitative and qualitative approachPalliative and Supportive Care; Er-Jung Hsueh, Shu-Chun Tsai, Jun-Hung Lai, Chi-Yu Lu, Tsai-Wei Huang, Made Satya Nugraha Gautama; 4/25Terminal cancer patients often endure significant distress, impacting their quality of life. Spiritual well-being provides peace and meaning during this challenging period. This mixed-methods study included 30 terminally ill patients and 17 next-of-kin caregivers in hospice care. Spiritual well-being was assessed using the Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale (FACIT-Sp-12), and symptom distress with the Edmonton Symptom Assessment Scale. Patients showed a significant improvement in spiritual well-being over time, ... [and] symptoms such as shortness of breath ... , drowsiness ... , and anxiety ... were negatively associated with spiritual well-being. Caregiver spiritual well-being positively influenced patient scores, especially with female caregivers ... Qualitative findings supported these results, revealing themes of spiritual adjustment, the impact of physical symptoms on spiritual well-being, and the crucial role of caregivers in providing emotional and spiritual support.

Successful strategies for operationalizing goals-of-care documentationNEJM Catalyst: Innovations in Care Delivery; by Matthew J. Gonzales, Nusha Safabakhsh, Suzanne Engelder, Deborah Unger, Ira Byock; 5/25Goals-of-care (GOC) conversations are critically important to ensure that clinical teams and health systems know what matters to their patients, enabling treatment plans to be aligned with patients’ goals. However, because many conversations are ad hoc and clinician dependent, patients with serious medical conditions often do not have GOC conversations documented in their health record... [In 2024], 2024, 8,533 out of 10,063 (84.8%) of patients who were in an ICU for 5 or more days had a documented GOC conversation in the electronic health record at some point between hospital admission and prior to the fifth ICU day. This compares with a preintervention rate of just 555 out of 8,143 (6.8%) of patients who were in an ICU for 5 or more days having a documented GOC conversation [in 2016]. Essential strategies included centering efforts within the organization’s mission and vision, partnering with clinical leaders to set strong quality standards and corresponding metrics, easing documentation within the electronic health record, and designing and implementing effective communication skills–building workshops.

A narrative review—Characterizing palliative care curriculum aimed at high school adolescents and young adultsIllness, Crisis and Loss; Austin B. Elder; 4/25The aim of this narrative review is to explore the characteristics of palliative care curriculum developed for high school adolescent and young adults (AYAs). Characteristics including a variety of designs, methods, and strategies were all identified to have positive participation, feedback, and experiences from high school AYA being provided palliative care curriculum. Conclusions: The literature indicates that the use of subject matter experts within palliative care curriculum for high school students is a core characteristic in meeting the World Health Organizations recommendation to embed palliative care curriculum into public awareness strategies.

Palliative and end-of-life care in stroke: A scientific statement from the American Heart AssociationStroke; by Claire J Creutzfeldt, Julia Bu, Amber Comer, Susan Enguidanos, Barbara Lutz, Maisha T Robinson, Darin B Zahuranec, Robert G Holloway, American Heart Association Stroke Council, Council on Cardiovascular and Stroke Nursing, Council on Clinical Cardiology; 2/25Stroke has multidimensional effects on patients and their families because of threats to personhood, prognostic uncertainty, and the need to adapt to functional changes after stroke. Palliative care has evolved as both a specialty and a skillset with a goal to improve communication about goals of care and quality of life for patients and their families that emphasizes a holistic, all-person approach. After stroke, palliative care needs (eg, to address pain and physical, emotional, psychosocial, and spiritual distress) are insufficiently addressed by current models of care. Integrating palliative care principles is fundamental in all stages of stroke and should include strategies to improve communication about prognosis and goals of care, address psychosocial needs such as coping with loss, navigating complex health care systems, and preparing for death when necessary.

What functions do palliative care bereavement services deliver? A scoping reviewPalliative Care and Social Practice; by Kathleen E Jurgens, David C Currow, Jennifer Tieman; 3/25Following someone's death, bereaved people may struggle with their grief. When a patient receives palliative care, bereavement support for the patient's family is an expected function of specialist palliative care services. To date, detailed descriptions of the purpose, function and provision of support from bereavement services are limited. This study examined how specialist palliative bereavement services self-defined their functions and described any support and interventions they offer.

Psychedelics, spirituality, and existential distress in patients at the end of lifeCleveland Clinic Journal of Medicine; by Nicole Cornish, Tara Coles, M Jennifer Cheng, Claudia Ruiz Sotomayor, Aaron Wolfgang, Christopher Spevak; 4/25Psychedelic-assisted therapy clinical trials conducted over the past decade have prompted increased interest in the use of psychedelics to treat nonphysical suffering, which can include significant spiritual and existential distress at the end of life. The authors explore the role of psychedelics in helping to address patients' spiritual and existential suffering from a medical, ethical, and legal perspective, with the aim of stimulating discussion and research on this timely and clinically promising topic.

End-of-life care and health care spending for Medicare beneficiaries with dementia in accountable care organizationsJAMA Network; Jessica J. Zhang, David B. Reuben, Anne M. Walling, David S. Zingmond, Cheryl L. Damberg, Neil S. Wenger, Haiyong Xu, Ryo Ikesu, Gillian S. Kaneshiro, Alexandra Klomhaus, Hiroshi Gotanda, Yusuke Tsugawa; 5/9/25This study of 162,034 Medicare fee-for-service beneficiaries who died from 2017 through 2020 found no evidence of differences in end-of-life care processes, outcomes, or spending between beneficiaries in ACO vs non-ACO. These findings suggest that alternative payment models to ACOs may be needed to coordinate high-quality care with lower health care spending for Medicare beneficiaries with dementia at the end of life.

“I’m as mad as hell and I’m not going to take this anymore!”JAMA Neurology; David N. Korones, MD; 4/25So shouted news broadcaster Howard Beale in the iconic 1976 film “Network” as he decried pollution, unemployment, inflation, crime, and all that was wrong in the world back then. And so shouted I, as I slammed down the phone after yet another denial from an insurance company—this time denial of treatment for an 8-year-old little girl with a brain tumor.Every day the phone, email, and text messages mount: an antinausea medication is not approved, oral chemotherapy is denied to a child because it is in liquid form, and only tablets are approved, brain surgery is denied because the patient has the misfortune of not living in the same state as the neurosurgeon who has the unique skill set to remove it, an insurance company that had previously approved an essential therapy for one of my patients now, for inexplicable reasons, denies refills half way through her prescribed course of treatment. Perhaps the more we push back, send them bills for our time, follow that up with bill collectors, call our congressional representatives, and summon our hospital leadership, we can gather a chorus of physicians, patients, hospital leaders, and politicians who all open their windows and, following Howard Beale’s lead, scream in unison that they, too, are mad as hell, and it is long past time to change this unjust system of care. To paraphrase Howard Beale, “our children, our patients are human beings, goddammit, their lives have value!”

Drivers of palliative care and hospice use among patients with advanced lung cancerCancer Medicine; by Megan C Edmonds, Melissa Mazor, Mayuri Jain, Lihua Li, Marsha Augustin, José Morillo, Olivia S Allen, Amina Avril, Juan P Wisnivesky, Cardinale B Smith; 1/25Despite rigorous evidence of improved quality of life and longer survival, disparities in the utilization of palliative and hospice care persist for racial and ethnic minority patients with cancer. This study evaluated the impact of psychosocial factors on utilization of these services. Minority patients with advanced lung cancer were more likely to receive a palliative care referral and specialty level consultation when compared to non-minority patients. Our work highlights the importance of proactive referral processes in facilitating access to palliative and hospice services, particularly among younger patients.

Top ten tips palliative care clinicians should know about diagnosing, categorizing, and addressing fatigueJournal of Palliative Medicine; by Gregg A Robbins-Welty, Danielle Chammas, Ethan J Silverman, Maria Felton Lowry, Elizabeth Hale, Corina Martinez, Morgan M Nakatani, Daniel Shalev, Paul Noufi, Paul A Riordan, Keri O Brenner, William E Rosa, Christopher A Jones; 3/25Fatigue is a multifactorial symptom that is commonly faced by patients with cancer, chronic disease, and other serious illnesses. Fatigue causes suffering across biopsychosocial domains and affects patients and their loved ones. In this article, a consortium of professionals across cancer care, physical therapy, exercise, pharmacy, psychiatry, and palliative medicine offers tips and insights on evaluating, categorizing, and addressing fatigue in the setting of serious illness. The comprehensive approach to managing fatigue underscores the importance of collaborative efforts characteristic of interdisciplinary palliative care. Prioritizing screening, diagnosing, and treating fatigue is crucial for enhancing patients' and families' overall quality of life.

Advancing the primary palliative workforce: Pilot results of the Educating Social Workers in Palliative and End-of-Life Care (ESPEC) self-study programJournal of Palliative Medicine; Myra Glajchen, Cathy Berkman, Shirley Otis-Green, Russell K Portenoy; 4/25Health social workers caring for the seriously ill may lack preparation in the primary palliative skills needed for this complex task. An evidence-based, nationally scalable, multimodality training program-Educating Social Workers in Palliative and End-of-Life Care (ESPEC)-was developed to address the training needs of health social workers. Prior to completing the online training, 21.6%-50.0% of participants rated themselves as "very confident" in the clinical practice skills central to the role of the social worker in serious illness care. After completing the modules, 58.8%-81.4% rated themselves as "very confident" in both clinical and professional skills, with significant changes in nine clinical practices and four professional practices. This pilot supports the feasibility, acceptability, and educational potential of the ESPEC self-study training in increasing confidence in key practices of primary palliative care for health social workers.