Literature Review

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.

Will Scotland be the first [in the UK] to legalise assisted dying? BBC News; by James Cook, Scotland editor; 3/16/26 For more than a year, Scottish politicians have been grappling with matters of life and death as they debated one of the most contested bills in the history of devolution. Tuesday's (3/10) final Scottish Parliament vote on the Assisted Dying for Terminally Ill Adults (Scotland) Bill is seen as too close to call. But, if it passes, Scotland could become the first nation in the UK to legalise assisted dying. ... Critics of the bill have called it dangerous and say MSPs should focus instead on improving end-of-life care. ... [Supporters of the bill have] said the result was a "bulletproof" bill which amounted to "the toughest and most comprehensively-safeguarded" such legislation in the world.

Nursing's moral agency cannot be outsourced to AI, study warns Medical Xpress; by University of Pennsylvania School of Nursing; 3/10/26 As artificial intelligence (AI) rapidly integrates into clinical settings—from predicting patient outcomes to deploying humanoid "robotic nurses"—an article published in the Hastings Center Report warns that the core of nursing, its moral agency, must remain a human-driven responsibility. The article, What Does Moral Agency Mean for Nurses in the Era of Artificial Intelligence?, explores the growing tension between advanced algorithmic capabilities and the ethical obligations of the world's most trusted profession. While AI systems can now simulate empathy and generate context-aware responses, Penn Nursing's Connie M. Ulrich, Ph.D., RN, FAAN, the Lillian S. Brunner Chair in Medical and Surgical Nursing, Professor of Nursing, and Professor of Medical Ethics and Health Policy, and her co-authors argue that AI lacks sentience, intentionality, and accountability. The authors define a moral agent as a person capable of discerning right from wrong and being held accountable for their actions.

Values considerations in telemedicine: Pause before shiftingJournal of Pain and Symptom Management; by Meaghann S. Weaver, Kenneth A. Berkowitz; 12/25As a contingency standard of care, telemedicine use surged during the COVID-19 pandemic. The Medicare telehealth flexibilities introduced during the COVID-19 pandemic expired in September 2025. Any ongoing sustained pivot to telemedicine warrants purposeful attentiveness to ethical considerations and not just technology use as an end unto itself. Telemedicine has the potential to complement face-to-face care practices and enhance clinical interactions when its use is based on shared values. Values such as access, equity, justice, compassion, autonomy, and dignity warrant thoughtful use of telemedicine. Patients and families need to be able to trust that clinicians and health systems will place patient welfare and shared values above technical convenience. As demonstrated in this case description, upholding values fundamental to the practice of medicine in telemedicine can enhance patient connection and foster trustworthy postpandemic practices.

[Japan] Ethics based educational interventions on end-of-life care for undergraduate nursing students: A scoping reviewInternational Journal of Nursing Studies advances; by Saeko Kutsunugi,Satoko Ono, Misae Ito, Kaho Suda, Siu Ling Chan, John Tai Chun Fung, Claudia Kam Yuk Lai, Kyoko Murakami; 6/26Nurses face various ethical dilemmas and conflicts in end-of-life care; however, there is no evidence of effective undergraduate ethics education on the topic settings to address them. The results suggest that while lectures are effective for acquiring ethical knowledge and attitudes related to EOLC based on ethical competency, simulations are more effective for acquiring practical skills such as communication, self-efficacy, and reflection. Incorporating ethical issues in simulations is hoped to broadly develop ethical practice competencies.

The roboagents are coming!: The promise and challenge of artificial intelligence advance directivesThe Hastings Center Report; by Jacob M Appel; Jan-Feb 2026Advance directives have historically relied upon human agents. But what happens when a patient appoints an artificial intelligence system as an agent? This essay introduces the idea of roboagents-chatbots authorized to make medical decisions when individuals lose capacity. After describing potential models, including a personal AI companion and a chatbot that has not been trained on a patient's values and preferences, the essay explores the ethical tensions these roboagents generate regarding autonomy, bias, consent, family trust, and physician well-being. This essay then calls for legal clarity and ethical guidance regarding the status of roboagents in light of their potential as alternative health care agents.

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.

What can we learn from death in the age of longevity? Time; by Arianna Huffington; 2/16/26 ... Research on those at the end of life shows that our values change as death approaches. At the end, we don’t crave more status or more things, but more connection. A study on terminally ill patients found that common reflections include concern for loved ones, gratitude, and spirituality. Another found that the most commonly discussed topics included accepting one's imperfections, celebrating and appreciating what you have, giving, and service to others. And a study of hospice patients found that they showed “the desire to grow and change at this critical time.” If hospice patients can grow and change at the end of life, why not grow and change now? ... It is a surprising, but important, lesson to learn: bringing death into our lives is what paradoxically allows us to live more fully.  

[Austria] Hospice nurses' views about the necessity for palliative sedation in existential sufferingPain Management Nursing; Dana Hagmann, Susanne Fleckinger, Piret Paal; 1/26Disagreements between nurses and doctors regarding the assessment and management of existential suffering in terminally ill patients represent a critical challenge in palliative care, particularly in the context of inpatient adult hospices. The study highlights the limited involvement of nurses in decision-making processes regarding palliative sedation despite their critical insights into patients' existential suffering. The findings emphasize the need for interdisciplinary collaboration and the integration of nurses' perspectives to achieve more holistic and ethically sound care in inpatient hospices.

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.

Integrating psychiatric and hospice services: Legal and clinical considerations for involuntary commitment in multimorbid end-of-life care American Journal of Hospice and Palliative Medicine; by Ilana Marmershteyn, BS, Darian Peters, BS, Victor Milev, BS, Mario Jacomino, MD, MPH, and George Luck, MD, FAAHPM; 1/28/26  Multimorbid patients at the end-of-life face complex medical, psychosocial, and psychiatric challenges. Hospice care aims to address physical, emotional, and spiritual needs; however, psychiatric comorbidities, particularly acute crises, remain under-recognized and inconsistently managed. The intersection of psychiatric intervention, hospice care, and legal frameworks such as involuntary commitment presents significant clinical and ethical challenges.

Woman faked can­cer, death to get out of court cases, DA says The Boston Globe; by Tonya Alanez; 1/24/26 A Ply­mouth woman who allegedly pre­ten­ded to have ter­minal brain can­cer to get out of numer­ous court cases, and even fab­ric­ated her death, is facing numer­ous charges related to the obstruc­tion scheme, pro­sec­utors said Thursday. Shan­non E. Wilson had sev­eral crim­inal cases pending in Mas­sachu­setts dis­trict courts dur­ing 2022 and 2023, accord­ing to a state­ment from the office of Ply­mouth Dis­trict Attor­ney Timothy J. Cruz. “Dur­ing the pen­dency of those pro­ceed­ings, wilson allegedly rep­res­en­ted — both per­son­ally and through defense coun­sel — that she was suf­fer­ing from ter­minal can­cer, was under­go­ing treat­ment, had entered hos­pice care, and ulti­mately had died," Cruz’s state­ment said.