Literature Review

Advance care planning in sickle cell disease: A scoping reviewJournal of Palliative Medicine; by Megan R Marshall, Miranda Ravicz Adelmann, Miriam A Osei, Sharl S Azar, Stephanie Kiser, Richard Newcomb; 7/26Sickle cell disease (SCD) is an inherited hemoglobinopathy characterized by abnormal red blood cell sickling, leading to pain, organ dysfunction, and early mortality. Its severe, unpredictable course and the emergence of complex decisions surrounding transformative therapies have prompted recommendations to integrate palliative care (PC) to support patients and families. The limited available evidence suggests that patients are open to ACP discussions with trusted clinicians, but few patients had participated in formal or informal ACP. Personal and environmental factors may influence ACP engagement, including patient-clinician trust, patient and clinician understanding of ACP in SCD, timing of ACP conversations, and previous experiences with critical illness or end-of-life care. Proposed steps for advancing ACP in SCD include education, early PC integration, and strengthened patient-clinician communication and relationships.

Palliative care physicians' perceptions about using artificial intelligence for prognosticationJournal of Pain & Symptom Management; by Stacy M Fischer, Regina M Fink, Ahmed Y Alasmar, Eric G Campbell, Matthew DeCamp; 7/26Statistical and artificial intelligence (AI)-based methods have informed clinical prognostication for decades, evolving into machine learning models integrated into electronic health records. We conducted a national survey of n=2,500 Hospice and Palliative Medicine physicians in the United States (January 2024-March 2025) to assess current prognostic practices, AI knowledge, and perceived benefits and risks of AI-based prognostication. Conclusions: Palliative care physicians report limited current use of AI-based prognostic tools but generally favorable attitudes toward potential benefits, especially among current AI tool users.

In a recent study, most oncologists chose not to assist patients in dying Cancer Therapy Advisor; by Jason L. Harris; 8/19/26 Most oncologists asked to consult with a terminally ill patient seeking medical aid in dying (MAID) choose to opt out, according to research published in JAMA Network Open. In a California-based study, researchers found high rates of oncologists opting out, forcing many patients to pursue MAID with physicians they did not know. Further, a small number of physicians were responsible for most MAID-related prescriptions. “Our dataset likely underestimates these challenges, as it only includes patients who successfully found an attending physician and does not capture instances when opt-out was not documented,” the researchers added.

Reports from Duke University describe recent advances in managed care (the South had the lowest rates of hospice and palliative medicine-certified providers in the Us, 2024): managed care Insurance Newsnet; by Staff; 8/13/26 A new study on Managed Care is now available. According to news reporting originating in Durham, North Carolina, by NewsRx journalists, research stated, “To improve access to care for serious illness, policy makers need evidence on how workforce capacity aligns with the need for palliative care. This study evaluated the palliative care workforce and policy environments at the state level, using a new data source: the 2024 Center to Advance Palliative Care’s comprehensive Serious Illness Scorecard.” Funders for this research include US Department of Veterans Affairs, Duke University, US Department of Veterans Affairs, Durham Center of Innovation to Accelerate Discover and Practice Transformation (ADAPT) at the Durham Veterans Affairs Health Care System. Read the study here.

Medical aid in dying: Bridging ethical guidance and bedside communication in nursing practiceJournal of Hospice & Palliative Nursing; by Jeanna Ford, Phyllis Whitehead; 7/26As MAiD [Medical aid in dying] becomes more integrated into serious illness care, nurses, particularly those in hospice and palliative care, are increasingly the first clinicians to receive patient questions about this option. These inquiries are often embedded in broader concerns related to suffering, loss of autonomy, fear of prolonged dying, and desire for control rather than solely requests for hastened death. The Hospice and Palliative Nurses Association’s recent position statement on medical aid in dying emphasizes compassionate, nonjudgmental care, respect for autonomy, professional integrity, and the ethical obligation of nonabandonment while recognizing the complexities of conscientious objection. This manuscript examines the evolving legal and ethical landscape of MAiD, explores the professional implications for nursing practice, and introduces the EXPLORE (Elicit, Explore, Probe Suffering, Learn Values, Observe Pressures, Review Support, Evaluate Next Steps) communication framework, a practice-based model developed to provide nurses with a structured, evidence-informed approach for responding to patient-initiated MAiD discussions. 

Where hospice fails us: A qualitative study of facilitators and barriers in transitions to hospice according to palliative care cliniciansJournal of Palliative Medicine; by Morgan M Nakatani, Julia G Cohn, Kris W Herring, Thomas W LeBlanc; 7/26Transitions to hospice are challenging for patients, caregivers, and health care teams, yet few studies have examined gaps in care from the perspectives of referring palliative care (PC) clinicians. PC clinicians identify substantial barriers to hospice transitions, underscoring the need to improve access to comprehensive end-of-life care. Clinicians emphasized the value of hospice and the Medicare benefit, while identifying barriers to hospice transitions [including] ... inadequate caregiving support, limited reimbursement, uncertainty around eligibility and prognostication, and differences between for-profit and non-profit hospice agencies. These barriers contributed to inequitable access to hospice and gaps in care.

Deactivation of cardiac devices at the end of life: clinical and ethical challenges Current Heart Failure Reports; by Marie-Gabrielle Courtès, Fiona Ecarnot, Mathilde Giffard; 8/13/26 Device deactivation in patients with heart failure is an increasingly relevant clinical and ethical challenge as the use of cardiovascular implantable electronic devices expands. ... Deactivating implantable cardioverter defibrillators can prevent painful and unnecessary shocks at the end of life, which may otherwise prolong dying without improving quality of life. Multidisciplinary involvement, including palliative care consultation, is essential to support patient-centered decision-making and symptom management. This review synthesizes the latest evidence and consensus on device deactivation in heart failure, emphasizing the need for communication, initiated early in the disease course, as well as individualized care, and integration of patient preferences throughout the disease trajectory.Editor's Note: What Policies and Procedures does your organization have in place? What interdisciplinary education do you ensure for all IDG members regarding this challenge for patients, families, and legal representatives? This clinical and ethical challenges presents potentially horrific trauma for the patient and those present when the person is actively dying and dies. Clincial and legal knowledge, preparations, and communications, and documentation are crucial.