Literature Review

Can I get a witness? The ethical dimensions of family presence in patient sufferingThe Hastings Center Report: by Jennifer Blumenthal-Barby, Trevor M Bibler, Holland Kaplan, Adam Omelianchuk, Joanna Smolenski; July-August 2026For patients who are suffering, the bedside presence of a family member can provide comfort, and many people hold that there is moral value in being present with a conscious, suffering patient. Yet what is the moral significance of the absence of family members when a patient is minimally conscious or unconscious and not aware of their absence? Clinicians are often troubled when family members and surrogate decision-makers who are able to spend a significant amount of time at an unconscious, seriously ill patient's bedside do not do so. Clinicians feel frustrated that they must bear the burden of witnessing the patient's actual or perceived suffering while the family escapes this burden and therefore appears to fail to uphold a duty to the patient. Is it morally defensible to request or require family members to be present with an unresponsive patient to bear witness to their actual or perceived suffering?

An exploration of gratitude on well-being in hospice and palliative care familial caregiversJournal of Palliative Medicine; by Kathryn Levy, Pei C Grant, Hannah Rachiele, Gina Schuster, Jonathan L Rossi, Sheila Conboy, Andrew Gasper, Christopher W Kerr; 7/26Familial caregivers (FCGs) play a critical role in health care by providing unpaid care to loved ones with serious illness. Although caregiving is often associated with emotional and physical burden, increasing attention has been directed toward potential sources of meaning and psychological growth, including gratitude. Higher levels of gratitude were associated with greater flourishing and recognition of positive caregiving experiences and were inversely associated with caregiver strain among FCGs of hospice and palliative care patients. Future longitudinal and intervention-based research is needed to determine whether gratitude-focused approaches can improve resilience, psychological well-being, and relational connection in end-of-life caregiving.

Nonreporting of race and ethnicity in medical research harms us all JAMA Internal Medicine | Editorial | Health Equity; by Sharon K. Inouye, MD, MPH, Jerard Kneifati-Hayek, MD, MS, Annette Flanagin, RN, MA, Kirsten Bibbins-Domingo, PhD, MD, MAS; Raegan W. Durant, MD, MPH; 8/24/26 At JAMA Internal Medicine, we have become increasingly aware that some US researchers are unable to report on race or ethnicity as demographic variables to describe their sample or to conduct stratified analyses by these variables. In some cases, we have been informed that based on 3 recent US federal executive orders, the stewards of federal databases, such as those responsible for distributing data from the Centers for Medicaid and Medicare Services (CMS), are unable to release any race or ethnicity data for research purposes. The restrictions may be particularly prohibitive when study investigators are US federal employees. We have been informed of similar concerns occurring at other biomedical journals. Editor's Note: This theme recurs throughout our American history. Stark examples repeatedly emerged when I was researching and writing my recent e-book: A History of Care: 250 Years of Need, Service and Hope.

Family caregivers' understanding, expectations, and emotional responses during transition to a palliative care unit: a qualitative study Empirical Research Qualitative; by Filipa Vieira-Matos and Paulo Reis-\Pina; 8/2/26 Aim: To explore how family caregivers interpret palliative care and respond to admission to a palliative care unit as a critical transition in care. ... Results: Admission was experienced as a critical transition. Three interrelated themes were identified: understanding of palliative care, expectations regarding care, and emotional responses. Participants described partial familiarity with palliative care but frequently associated referral with terminal illness. Expectations focused on comfort and clear communication. Emotional responses included fear, uncertainty, and ambivalence, particularly when referral occurred abruptly. ... Impact: Admission was experienced as a transition involving meaning-making, expectation formation, and emotional adjustment. Findings may inform nursing practice in inpatient palliative care by supporting caregiver-centered transition support.

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.