Literature Review

Lost in transmission: Changes in organ donor status can fall through cracks in the system KFF Health News,  Akron News Reporter; by Céline Gounder; 3/29/26 When Raven Kinser walked into a Virginia Department of Motor Vehicles office two summers ago, she completed a driver's license application that included the option to register as an organ donor. The form provides a checkbox to opt in, but not one to opt out. Kinser left the donor registration box unchecked, reflecting her decision to reverse an earlier donor registration. Six months later, after she was declared dead at Riverside Regional Medical Center in Newport News, Virginia, her parents say, they learned that her decision did not prevent organ procurement. Raven's case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out or to ensure a later "no" overrides an earlier "yes" in a different state.

Mike Schramm: 'The Pitt' and the doctrine of double effect 1819 News, Birmingham, AL; by Mike Schramm; 3/27/26 ... In season two [of The Pitt], episode eight, Drs. “Robby” and McKay begin a conversation about a patient with terminal cancer in agonizing pain who is nearing death. “Where are we with the morphine?” Robby asks, suggesting they raise the dosage. After being told (surely for the viewers) “she could stop breathing,” he gestures and asks, “Are you familiar with the doctrine of double effect?” ... “We treat pain,” Robby explains. “And if, in doing so, there’s a negative side effect, we accept it.” “Even if the negative side effect is death?” McKay asks. While this might seem intuitive to some, its history and reasonability cannot be taken for granted. This doctrine of double-effect basically affirms that a good or neutral action may be morally undertaken in good conscience, even if one knows that a secondary bad result will occur from that action.

Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life Pediatric Critical Care Medicine; by Sabrina Derrington, Elizabeth G Broden Arciprete, Matthew C Lin, Simon J W Oczkowski, Amanda Alladin, Uchenna E Anani, Amanda K Borchik, Cassandra A Collins, Claudia Delgado-Corcoran, Mindy J Dickerman, Christopher G Harrod, Natalia Henner, Alexander A Kon, Mithya Lewis-Newby, Blyth T Lord, Ashley-Anne Masters, Sarah McCarthy, Katie M Moynihan, Sara M Munoz-Blanco, Lauren Rissman, Kathryn E Roberts, Amy B Schlegel, Ashleigh Schopen, Linda B Siegel, Harriett Swasey, Sarah E Wawrzynski, David J Zorko, Danielle D DeCourcey; 3/20/26 online ahead of print Objectives: To develop and provide evidence-based recommendations for EOL care and management of critically ill neonatal and pediatric patients and their families. Results: The [21-member multidisciplinary panel of experts] generated five conditional recommendations and one good practice statement, focused on advance care planning, pediatric palliative care consultation and education, systematic symptom management, bereavement support, and health equity in EOL care.

50 years ago, Karen Quinlan’s coma sparked the movement for patients’ rights near the end of life The Conversation; by Kalpana Jain; 3/23/26 March 31, 2026, marks 50 years since a landmark decision that shapes American patients’ rights every day: the New Jersey Supreme Court ruling in the case of Karen Ann Quinlan, who had suffered an irreversible coma. Quinlan’s case established for the first time that decisions near the end of life should be made by patients and families, not by doctors and hospitals alone. As a bioethicist, I have taught and written extensively about the profound impact the Quinlan case has had on law, bioethics and the pursuit of death with dignity. A decade after the Quinlan case, New Jersey created a Bioethics Commission to study advancing health care technology in light of the decision’s principles. The commission’s proposed legislation establishing advance directives was enacted on July 11, 1991. I was privileged to lead this project, as staff to the commission. Today, all 50 states have advance directive laws that allow competent adults to plan ahead and put their wishes for end-of-life care in writing.

The non-professional virtues of the hospice volunteer Journal of Applied Philosophy; by Michael B. Gill; 3/12/26 Volunteers have long played a significant role in hospice care. Much of the care volunteers provide consists of weekly hour-long in-home visits. Home-visiting hospice volunteers are not professionals, nor are they strangers or intimates. Hospice volunteers will not typically face moral dilemmas, nor be called upon to make dramatic decisions. Nonetheless, hospice volunteering can exemplify a neglected area of in-between ethics – a subset of what Brownlee has called the ‘ethics of interacting’ – that can redound to the wellbeing of all concerned. This article explores the in-between ethics of hospice volunteering and the opportunities it affords to cultivate virtues of attention and gratitude.

‘Don’t play God’ in end-of-life conversations Medscape; by Medscape's editorial team; 3/5/26 For many clinicians, the most difficult words to utter are not a complex diagnosis but a simple admission: “We have reached the end of what medical care can do to make your loved one better.” An ICU/emergency room (ER) nurse with 30 years of experience says avoiding this reality can “prolong the dying process” rather than an extension of meaningful life — and called “false hope in the next procedure, next drug, next consultation” the “cruelest thing a well-meaning caregiver can do.”

Navigating end-of-life decisions with Islamic ethics WisconsinMuslimJournal.org; by Sandra Whitehead; 2/20/26 Medical College of Wisconsin Professor Aasim I. Padela, M.D., founder and president of the Initiative on Islam and Medicine, discussed Islamic bioethics during a January workshop on end-of-life decisions at the Islamic Society of Milwaukee. ... About 50 people attended the four-hour workshop, Islamic Bioethics & End-of-Life Healthcare Decisions, held Jan. 31 at the Islamic Society of Milwaukee. It featured experts with backgrounds in medicine, palliative care, hospice and Islam. Speakers made presentations and led discussions about practical steps, resources and strategies to help Muslims “transition from a state of uncertainty about end-of-life healthcare to thoughtful preparation for it,” a workbook given to participants stated.

A qualitative study with patients, care-partners, clinicians, and bioethicists to identify ethical considerations of artificial intelligence tools in palliative carePalliative Medicine; by John Y. Rhee, Paul Miller, Zachary Tentor, Amanda Reich, Alexi A. Wright, Charlotta Lindvall; 1/26The use of artificial intelligence (AI) in medicine has surged. Given the sensitive nature of palliative care, it is crucial to apply AI tools in a patient-centered and ethical manner. From the interviews we extracted five main themes: (1) Primacy of the doctor-patient relationship over AI performance; (2) Humans have intuition and nuance that AI lacks; (3) Agreement about the importance of oversight of AI tools; (4) New AI technologies should include a process for patient education; and (5) AI increases efficiency, scalability, and a more unified approach to serious illness. When building and implementing AI-based tools, we recommend: establishing oversight committees; reflecting on the unique contributions of humans to care; proactively educating patients and contextualizing the tools; and ensuring data use is restricted to clinical care.

What my sister Ellen taught me about dignity and the importance of being seen: A powerful reflection on person-centered care, bias, and the true meaning of human dignity in medicine Good Men Project; by Harvey Max Chochinov; 2/23/26 Several years before her death at the age of 55 years due to complications of cerebral palsy, my sister Ellen was again in hospital, this time in intensive care and on the brink of respiratory collapse.  ... I’ve spent my entire career as a psychiatrist working in palliative care. This has included leading a large program of research, examining most aspects of end-of-life experience for patients nearing death. Recently I have recast the Golden Rule for healthcare professionals, reminding them they must aspire to a higher standard. I have coined this The Platinum Rule: do unto others as they would want done unto themselves. This means that healthcare professionals can’t presume to know what is in the patient’s best interest based on what they themselves would want in those circumstances; in other words, they need to take the time to consider the patient’s goals, hopes and wishes.

Positive experiences of seriously ill lesbian, gay, bisexual, transgender, and queer persons and their partners with healthcare providers: Project Respect American Journal of Hospice and Palliative Medicine; by Cathy Berkman, PhD, MSW, Gary L. Stein, JD, MSW, Noelle Marie Javier, MD, Kimberly D. Acquaviva, PhD, MSW, David Godfrey, JD, Sean O’Mahony, MD, Shail Maingi, MD, Carey Candrian, PhD, Christian González-Rivera, MUP, Imani Woody, PhD, and William E. Rosa, PhD; 1/24/26 Results: There were numerous reports of respectful, affirming, and competent care, including: healthcare providers who were open about discussing a respondent’s LGBTQ+ identity and their specific health concerns; intake and assessment forms that included pre-specified choices for sexual orientations and gender identities; using correct names, pronouns, and gender; healthcare providers who identified as LGBTQ+ or signaled being an ally; and treating spouses, partners, and widows respectfully and including them in decision-making.

Can AI hear when patients are ready for palliative care? Researchers use AI to analyze patient phone calls for vocal cues predicting palliative care acceptance Penn LDI - Leonard Davis Institute of Health Economics; by Hoag Levins; 2/24/26 A new study suggests artificial intelligence (AI) may help clinicians identify which seriously ill patients are ready for palliative care — by analyzing the energy, pitch, and other subtle vocal cues in recorded group phone conversations among patients, caregivers, and health care providers. The new work by a team led by LDI Senior Fellow and Penn Nursing School Assistant Professor Jiyoun Song, PhD, APRN, is the first to use speech processing to identify palliative care preferences during discussions and decision-making in managed long-term care (MLTC), a type of Medicaid-managed care for community-dwelling patients that need home and community-based services.