Literature Review

Sunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!   Also, remember our Job Board to find staff for the new year!

In their own words: Creating connections through narrative medicineJournal of Patient Experience; by Sneha Mantri, Lissa Kapust, Jillian Goober, David K Simon; 11/25People with Parkinson's disease (PwP) often report feeling unheard or hurried through clinical visits, without the opportunity to share their unique illness story. Simultaneously, clinicians report increasing dissatisfaction with efficiency pressures that disincentivize active listening and patient-centered communication. This research brief outlines a guided short-form journaling activity, the 55-word story, for PwP to share their stories in a format that can be received by busy clinicians. By the end of each cohort, nearly all (31/35 participants, 88.6%) reported an improved relationship with their neurologist, communication skills, clarity about goals and values, and/or increased community with other PwP. An online guided journaling activity was feasible, enjoyable, and successful at improving the well-being of PwP. This model can be used at other institutions or with other chronic illnesses.

323.3: What happens after the gift? Insights from organ procurement organizations on strengthening aftercare in the United StatesTransplantation; by Levan, Macey; Akhtar, Jasmine; Sidoti, Carolyn; Kaplow, Katya; Klitenic, Samantha; Flower, Tessa; Yusef, Bola; Vanterpool, Karen; Parent, Brendan; Koons, Brittany; 12/25Each of the 55 U.S. organ procurement organizations (OPOs) is responsible for obtaining authorization for donation and supporting donor families through the donation process. While federal regulations mandate certain responsibilities related to authorization and coordination, there is no regulatory requirement that OPOs provide services to families after donation. Nonetheless, most OPOs have developed “aftercare” programs, which historically have focused on honoring loved ones, commemorating donation, and offering limited grief-related support. Facilitators of meaningful aftercare included peer connection efforts, standardized data processes, and tailoring services to diverse family needs. However, the structure, scope, and intensity of these programs vary widely, and there has been little national attention to standardizing or modernizing aftercare efforts. Common barriers to effective aftercare included limited access to mental health resources, low survey response rates, insufficient staffing or funding, and fragmentation between initial and long-term support teams. 

Abstract 4364177: Underutilization of palliative care in peripheral artery disease: A state-of-the-art review across cardiovascular conditionsCirculation; by Odaly Balasquide-Odeh, Roberto Lapetina-Arroyo, Christiany Tapia, Alvaro Pinto-Rodriguez, Santiago Callegari, Mufti Rahman, Gaelle Romain, Kim Smolderen, Carlos Mena-Hurtado, Aseem Vashist, 11/25Peripheral artery disease (PAD) is associated with high morbidity and mortality, yet palliative care (PC), a supportive, team-based approach integrated remains underutilized. This review contrasted PC components, patient-level and program outcomes, and patient-reported outcomes across heart failure (HF), coronary artery disease (CAD), and peripheral artery disease (PAD). HF programs provide a transferable template for PAD, based on an early, structured and multidisciplinary PC. This could lead to a PAD-specific care model that integrates best practices from HF and that helps address underuse in a vulnerable and overlooked population.

Translating the value of palliative transfusions for patients with blood cancers into high-quality end-of-life careJAMA Network Open; by Pamela Egan, Dana Guyer; 11/25Studies have described how patients with blood cancers enroll in hospice care at lower rates than patients with solid tumor cancers, receive more futile chemotherapy, are more likely to seek emergency care at the EOL [end of life] , are more likely to be treated in intensive care units, and are more likely to die in hospital settings than their counterparts with solid tumors. The Medicare hospice benefit is structured in such a way that providing transfusions is cost prohibitive for hospice agencies. It is time to heed the call from the American Society of Hematology and palliative care and hospice agencies nationwide to revise the Medicare hospice benefit such that patients with blood cancers can receive hospice care as soon as their cancer-directed treatments are no longer valuable without sacrificing the quality-of-life–sustaining transfusions. This will be an important step toward ensuring high-quality EOL care for patients with hematologic malignant neoplasms.

Teaching primary palliative nursing care: A model of competency-based educationJournal of Professional Nursing; by Hannah Murphy Buc, Melissa McClean, Janet Armstead Wulf; Jan-Feb 2026Holistic care models such as primary palliative care offer individuals a coordinated, interprofessional and compassionate approach in any healthcare setting regardless of condition. Currently, palliative and end-of-life nursing care content is either threaded throughout nursing curricula or not included at all. This article documents the development of a required primary palliative care course in a baccalaureate nursing program and shares recommendations on competency-based teaching and evaluation methods to encourage implementation in other academic nursing settings. Course evaluations indicate that the class was well received and valuable to students' learning experience.

Bioethics for aging societiesThe Hastings Center for Bioethics; 2025Bioethics for Aging Societies explores ethical and social challenges arising from population aging, a demographic shift toward longer lives and smaller families. Its goal is to help researchers, professionals, and members of the public think together about common challenges facing aging societies like the United States, with attention to foundational questions: What does it mean to live a good life in later life? And how should we live together in aging societies in ways that include and support fellow citizens who are aging or providing care?Publisher's Note: This series of articles was featured in The Hastings Center's year in review.

Netflix: Goodbye June Netflix; retrieved 12/31/25 A messy yet affectionate family gathers round their mother's hospital bed to grapple with grief, complicated love and the tenderness of a final goodbye. Starring: Helen Mirren, Kate Winslet, Toni ColletteEditor's Note: Do you love movies? Are you transitioning from holidays back to your end-of-life care work? Goodbye June might be that just-right film for you. For readers with access to Netflix, check it out.

Pediatric respite homes provide a survival mechanism for struggling families [podcast]Medpage Today's KevinMD.com; by KevinMD; 1/1/26Certified coach and professor Kathleen Muldoon and co-founder of Ryan House and Children’s Respite Homes of America Jonathan Cottor discuss the article “The need for pediatric respite care.” Kathleen shares the personal story of raising her son Gideon who lives with over 42 medical diagnoses and explain why the family had to move across the country to find safety. They highlight the critical difference between taking a break and surviving the relentless cycle of 24/7 medical vigilance required for medically complex children. 

Medical Aid in Dying legislation and the limits of prognostic science American Council on Science and Health; by Chuck Dinerstein, MD, MBA; 1/2/26... End-of-life issues are complex because empirical questions (what happens, works, or harms) that can be approached by science are deeply entangled with value questions (what should count as a good death, autonomy, dignity, moral limits). The recent decision by Governor Hochul of New York to advance and promise to sign a Medical Aid in Dying (MAID) bill provides us with the opportunity to consider that entanglement.