Literature Review

Palliative care knowledge, attitudes, and self-competence of nurses working in hospital settingsJournal of Palliative Care; by Mona Ibrahim Hebeshy, Darcy Copeland; 6/25With the growing need to integrate palliative care into healthcare systems, nurses in hospital settings often provide care for patients with life-limiting conditions, many of whom lack formal education in palliative care. [Conclusions:] Nurses generally feel competent; however, they often lack confidence in addressing patients’ social and spiritual needs. They experienced unease when discussing death and exhibited paternalistic attitudes. Significant differences were found in educational background, nursing experience, personal caregiving experience, and practice setting. Positive correlations exist between attitudes, knowledge, and self-competence, indicating that greater knowledge and competence were associated with better attitudes toward end-of-life care.

20 states sue after the Trump administration releases private Medicaid data to deportation officials Associated Press (AP), Washington, DC; by Amanda Seitz and Kimberly Kindy; 7/1/25The Trump administration violated federal privacy laws when it turned over Medicaid data on millions of enrollees to deportation officials last month, California Attorney General Rob Bonta alleged on Tuesday, saying he and 19 other states’ attorneys general have sued over the move. Health secretary Robert F. Kennedy Jr.’s advisers ordered the release of a dataset that includes the private health information of people living in California, Illinois, Washington state, and Washington, D.C., to the Department of Homeland Security, The Associated Press first reported last month. All of those states allow non-U.S. citizens to enroll in Medicaid programs that pay for their expenses using only state taxpayer dollars.

Palliative care in the ICU: From oxymoron to standard of careIntensive Care Medicine; by Nancy Kentish-Barnes, Judith E. Nelson; 6/25Palliative care can be integrated into intensive care through ICU clinicians and palliative care specialists, and these approaches are complementary and synergistic. One study found that proactive specialist involvement in ICU rounds for high-risk patients led to more and earlier family meetings and shorter hospital stays. However, collaboration challenges, such as continuity of communication, highlight the need for close team cooperation. The integrative model trains intensivists and ICU nurses to embed palliative care into routine practice, ideally starting in medical and nursing education. Research has shown that improved communication and support from intensivists and ICU nurses are associated with better bereavement outcomes for families, including reduced post-traumatic stress, anxiety, depression, and prolonged grief.

Texas floods: "Ways you can help" and "Community crisis and grief resources for hospices"Lists and links compiled at Composing Life Out of Loss - Community Grief; by Joy Berger; updated 7/8/25 

Medicaid provisions threaten home and community-based services for millions of vulnerable Americans National Alliance for Care at Home, Alexandria, VA and Washington, DC; Press Release; 7/3/25The National Alliance for Care at Home (the Alliance) issued the following statement today in response to the House’s passage of the “One Big Beautiful Bill Act,” also known as the Reconciliation bill, which now heads to President Trump’s desk for his signature. “The Alliance is deeply troubled by the Medicaid provisions within the One Big Beautiful Bill Act, which has passed both chambers of Congress and now awaits President Trump’s signature,” said Alliance CEO Dr. Steve Landers. “These provisions—including work requirements, reduced provider taxes, and new cost-sharing mandates—prioritize short-sighted budget savings over the health and wellbeing of our most vulnerable citizens who rely on home and community-based services (HCBS).” The home care community advocated throughout the legislative process for Congress to mitigate these harmful Medicaid provisions.

Pallitus Health Partners receives CHAP Accreditation for Adult Palliative Care and Pediatric Care Certification for Kourageous Kids Pallitus Health Partners, Louisville, KY; Press Release; 7/8/25 Community Health Accreditation Partner, Inc. (CHAP) has awarded Care Guide Partners, Inc. (dba Pallitus Health Partners) CHAP Accreditation under the CHAP Palliative Care Standards of Excellence. The nonprofit also received certification for its Kourageous Kids (KKids) palliative care program. CHAP Accreditation demonstrates that Pallitus Health Partners meets the industry’s highest nationally recognized standards. The rigorous evaluation by CHAP focuses on structure and function, quality of services and products, human and financial resources, and long-term viability. Simply stated, adherence to CHAP’s standards leads to better quality care. ... Pallitus Health Partners, an affiliate of Hosparus Health, offers comprehensive palliative care for serious illnesses in Kentucky and Indiana. Editor's Note: Congratulations to Pallitus Health Partners and Hosparus Health! This accreditation marks yet another milestone of excellence for this organization—originally founded as Hospice of Louisville—which established one of the nation’s first pediatric hospice teams in 1980. I had the privilege of serving on the Pediatric Team of Hospice & Palliative Care of Louisville from 1997 to 2001. Profound experiences with these children, their parents, siblings, grandparents, our dedicated team members, and community partners are embedded in me, forever. They continue to shape my perspective and purpose in my role as editor in chief of this newsletter. 

I bet jellyfish are sad that there are no peanut butter fish.

Keep your face always toward the sunshine and shadows will fall behind you. ~Walt Whitman 

Mapping the final journey: End-of-life frailty trajectories and cause of deathJournal of the American Geriatrics Society; Jianhong Xu, Jonathan Ka-Long Mak, Qian-Li Xue, Chenkai Wu; 6/25Frailty trajectories at the end of life varied by cause of death, with neurodegenerative disease decedents exhibiting more severe frailty. Among 37,465 decedents, 2,895 (7.7%) died from neurodegenerative diseases [and] three distinct frailty trajectories were identified among these decedents: rapidly progressive frailty (6.9%), moderate progression of frailty (21.1%), and advanced and stable frailty (72.0%). These patterns differed significantly from those observed in decedents with other causes of death, who exhibited persistently low frailty (24.7%), intermediate and progressive frailty (46.5%), and advanced and progressive frailty (28.8%). Compared to cancer decedents, individuals with neurodegenerative diseases had higher baseline frailty and a dominant trajectory of advanced and stable frailty. Older age, lower education, and greater chronic disease burden were associated with the advanced and progressive frailty trajectory.

Facilitating advance care planning conversations among patients with cancer and their care partners utilizing a conversation game: A pilot studyCancer Reports; Kylee Kimbel, Michael Hayes, Morgan Bucher, William A Calo, Tullika Garg, Monika Joshi, Hannah Kuntz, Terrence E Murphy, Erika VanDyke, Emily Wasserman, Lauren J Van Scoy; 6/25Current guidelines [for patients with cancer] recommend early, frequent advance care planning (ACP) conversations among clinicians, patients, and care partners (CPs) and advance directive (AD) completion. However, only 55% of patients with cancer have completed such directives, suggesting the need for interventions to increase rates of ACP. The Hello game has been shown to be effective in promoting ACP in several populations but has not been tested in patients with cancer or their CP. Three themes emerged from both patient and CP focus groups ...: (1) Participants enjoyed the group dynamics and relating to peers when playing Hello; (2) Hello serves as a helpful conversation starter; (3) modifications could help tailor Hello for use in cancer context-particularly adding more questions about quality of life and mental health. Hello was well-received by dyads, and their feedback was used to tailor Hello for patients with cancer and their CPs.

Addressing the underutilization of hospice care in Asian American communities: A scoping reviewAmerican Journal of Hospice and Palliative Medicine; Tuzhen Xu, PhD, APRN, FNP-C; Dan Song, PhD, RN; Gloria M. Rose, PhD, NP-C; 6/25Despite national improvements in hospice care, utilization remains low among Asian American (AA) communities. Identified barriers to hospice utilization included language and communication challenges; cultural values and beliefs surrounding death; family-centered decision-making and filial piety; religious influences such as beliefs in karma and suffering; and broader issues like low acculturation and mistrust of the healthcare system. Comprehensive cultural competence training is needed for healthcare providers, especially physicians, nurse practitioners, registered nurses, and social workers involved in hospice and palliative care.

Measuring goal-concordant care using electronic clinical notesJAMA Network; by Catherine L. Auriemma, Anne Song, Lake Walsh, Jason Han, Sophia Yapalater, Alexander Bain, Lindsay Haines, Stefania Scott, Casey Whitman, Stephanie Parks Taylor, Gary E. Weissman, Matthew J. Gonzales, Roshanthi Weerasinghe, Staci J. Wendt, Katherine R. Courtright; 7/3/25In this longitudinal cohort study among 109 patients with serious illness and limited prognoses, clinicians reviewed and classified 398 epochs of care as goal concordant (50%), goal discordant (19%), or of uncertain concordance (32%) with nearly perfect interrater agreement for categorizing the type of care received. These findings suggest that using electronic clinical notes to measure goal-concordant care is feasible, laying the groundwork for future automated text-based classification methods to improve reliability and pragmatism of measuring goal-concordant care for clinical and research use at scale.

Home-based palliative care for cancer patients: Evaluating a decade of nursing-led interventionsAmerican Journal of Hospice and Palliative Medicine; Júnia de Oliveira Alves, RN; Eduardo Bruera, MD; Mônica Isaura Corrêa, MD; Sonia Souza, PhD; Marília Ávila de Freitas Aguiar, PhD; Ana Paula Drummond-Lage, PhD; 6/25Home-based palliative care is an effective approach for managing advanced-stage cancer patients, particularly in regions with limited healthcare infrastructure. In Brazil, the “Better at Home” Program enables interdisciplinary teams to deliver palliative care in patients’ homes, with nurses playing a central role in providing clinical and supportive interventions. Registered nurses (RNs) were responsible for complex procedures, supervision of nursing technicians (NTs), and caregiver training, while NTs performed routine clinical tasks and assisted with daily care. Notably, 99.4% of patients died at home, suggesting alignment with palliative goals of care. These findings underscore the central role of RNs in coordinating and delivering home-based palliative oncology care within a multidisciplinary framework.