Literature Review

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.

Hospice care for medicaid cancer patients in Puerto Rico: implications on healthcare costs and utilization JNCI Cancer Spectrum; by Karen J Ortiz-Ortiz, Marjorie Vázquez-Roldán, Axel Gierbolini-Bermúdez, María Ramos-Fernández, Carlos R Torres-Cintrón, Yisel Pagán-Santana, Tonatiuh Suárez-Ramos, Kalyani Sonawane; 12/27/25 Online ahead of print Background: ... In Puerto Rico, Medicaid had no provisions for hospice care until July 2024, representing a significant public health challenge. This study examined the association between hospice coverage policy and EoL outcomes among patients with cancer enrolled in Medicaid.Conclusion: Hospice enrollment among Medicaid enrollees was associated with lower health expenditure, lower healthcare resource utilization, and a lower likelihood of mortality in an acute setting. The recent policy change to include hospice services coverage in Puerto Rico Medicaid is a positive step that must be sustained beyond 2027.

The hidden influence of social narratives on end-of-life decisionsJournal of Applied Social Science; by Stephanie Smith; 11/25Widespread exposure to idealized and distorted portrayals of death across news media, entertainment, and advertising has reshaped societal understandings of mortality. Often depicted as rare, swift, conquerable, or emotionally distant, death is stripped of realistic representation, obscuring the complexities of the dying process. Drawing on social cognitive theory, this interdisciplinary conceptual analysis examines how such portrayals function as behavioral models—shaping individual attitudes toward mortality, influencing end-of-life care decisions, and informing public health policy and resource allocation. Addressing these distortions requires a cross‑disciplinary shift in cultural attitudes, bringing together storytellers, clinicians, educators, and policymakers to integrate authentic portrayals of dying into public discourse, reframe aging as a valued stage of life, and expand access to death education. Such efforts can dismantle harmful myths, support informed decision-making, and guide healthcare systems toward practices that balance medical possibility with human dignity. In doing so, society may cultivate a more honest, empathetic, and developmentally appropriate relationship with mortality.