Literature Review

Does family functioning matter? Understanding the relationship between family interactions and depressive symptoms for caregivers of cancer patientsAmerican Journal of Hospice and Palliative Care; by Keisha White Makinde, Kyle A Pitzer, Jacquelyn J Benson, Maysara Mitchell, Debra Parker Oliver, George Demiris, Karla T Washington; 6/25Caregivers of cancer patients are at increased risk of depression and other health challenges. There is limited understanding of the role of the caregiver's own family members in promoting or discouraging mental wellbeing. Family caregivers with more positive family interactions are likely to have fewer depressive symptoms, suggesting family functioning may play a key role in bolstering family caregiver mental health and wellbeing.

An intervention to increase advance care planning among older adults with advanced cancer-A randomized clinical trialJAMA Network Open; Angelo E. Volandes, MD, MPH; Yuchiao Chang, PhD; Joshua R. Lakin, MD; Michael K. Paasche-Orlow, MD; Charlotta Lindvall, MD, PhD; Seth N. Zupanc, BA; Diana Martins-Welch, MD; Maria T. Carney, MD; Edith A. Burns, MD; Jennifer Itty, MPH; Kaitlin Emmert-Tangredi, MSW; Narda J. Martin, MSN-ED, RN; Shreya Sanghani, MS; Jon Tilburt, MD; Kathryn I. Pollak, PhD; Aretha Delight Davis, MD, JD; Cynthia Garde, MBA; Michael J. Barry, MD; Areej El-Jawahri, MD; Lisa Quintiliani, PhD; Kate Sciacca, NP; Julie Goldman, MPH; James A. Tulsky, MD; 5/25Despite accumulating evidence of the benefits of these discussions, documentation of advance care planning (ACP) activity in the electronic health record (EHR) remains low and inconsistent for most health care systems, increasing the risk that patients will not receive care that matches their goals. In this pragmatic stepped-wedge randomized clinical trial among older patients with advanced cancer, an intervention combining patient video decision aids and clinician communication skills training increased the proportion of patients with ACP documentation. This randomized clinical trial exploring a combined intervention of patient empowerment and clinician communication skills training found a significant and clinically meaningful increase in ACP documentation rates with a scalable intervention that can be rapidly implemented across large health care systems. This approach offers an innovative paradigm with a clinically meaningful increase in ACP documentation, a widely used quality metric that reflects high-quality patient-centered care delivery.

The dementia care workforce: Essential to care but large research gaps existAlzheimer's and Dementia; Jasmine L Travers Altizer, Jennifer M Reckrey, Bianca K Frogner, David C Grabowski, Joanne Spetz; 5/25People living with dementia and their care partners benefit from services and supports from a wide variety of healthcare and social service professionals. This article provides an overview of the dementia care workforce and highlights gaps and opportunities for data collection and research to advance the workforce and its contributions to high-quality care. There are notable gaps in our ability to track career pathways, assess the impact of training, identify best practices for recruitment and retention, and understand attributes of the workforce that may affect the quality of both workers' lives and the care they provide to people living with dementia. The dementia care workforce works in multiple settings and includes many occupations. Evaluation research is needed to improve direct care worker recruitment, retention, and knowledge.

Referral criteria for specialist palliative care for patients with dementiaJAMA Network Open; Yuchieh Kathryn Chang, DO; Jennifer Philip, PhD, MMed, MBBS; Jenny T. van der Steen, PhD; Lieve Van den Block, PhD, MSc; Allyn Yin Mei Hum, MD; Pedro E. Pérez-Cruz, MD, MPH; Carlos Paiva, MD, PhD; Masanori Mori, MD; Ping-Jen Chen, MD; Meera R. Agar, PhD, MPC, MBBS; Laura Hanson, MD, MPH; Catherine J. Evans, PhD, MSc, BSc; David Hui, MD, MSc; 5/25Dementia is an ever-growing public health issue with currently more than 55 million people worldwide living with this disease. Due to an aging global population, this number is projected to triple by 2050. As the number of people with dementia continues to grow worldwide, there is a need and an opportunity to collaborate and provide seamless integration of specialist palliative care with the primary palliative care already delivered to enhance the care of patients with dementia. To help advance this goal, the 15 major criteria identified here represent a first step toward clarification of primary and specialist palliative care roles and consideration for systematic screening of symptom and supportive care needs.

A practice model for palliative radiotherapyCureus; Alina Zheng, Alec Zheng, Alan Zheng, Xiaodong Wu, Beatriz Amendola; 5/25Despite well-recognized challenges in implementing palliative radiation therapy (PRT), progress remains slow, and conventional approaches have yielded limited success. A specialized certification track within radiation oncology residency programs is proposed, enabling palliative care physicians to obtain limited PRT licenses under the supervision of fully licensed radiation oncologists. Dedicated PRT facilities-affiliated with comprehensive radiation therapy centers (CRTCs) and integrated into hospice settings-will enhance accessibility by reducing logistical and financial burdens. These facilities will utilize cost-effective infrastructure, including refurbished linear accelerators, modular construction, and remote physics and dosimetry support, ensuring operational costs remain significantly lower than those of conventional radiotherapy centers. Systematic studies with a PRT-oriented mindset should establish PRT-specific treatment recommendations and recommendations, moving away from conventional radiation therapy protocols. While requiring initial investment and regulatory adjustments, it has the potential to improve end-of-life care for terminally ill cancer patients, ensuring greater dignity and comfort while establishing a robust foundation for future reimbursement models.

Impact of an inpatient telepalliative care consult service in rural hospitals: One state storyJournal of Hospice and Palliative Nursing; by Anup Bhushan, Scott D Hurley, Patrick J Coyne; 2/25Palliative care has become a standard of care for patients with serious illnesses. However, many rural hospitals do not have access to specialized palliative care consultation. This article describes the journey taken by a palliative care team to improve access to palliative care and overall patient outcomes at rural hospitals throughout the state of South Carolina by using the telehealth modality. The impact, challenges, and benefits of the program are discussed.

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.