Literature Review

Patients' perceptions of autonomy in palliative care: Two patient interview exemplars Palliative Care and Social Practice; by Kristen Tulloch, Julia Acordi Steffen, John P Rosenberg; 1/19/26 Results: Four themes were identified: (a) my involvement in healthcare decisions, (b) change to my autonomy during illness progression, (c) self-assessing my abilities to exercise autonomy and (d) my coping mechanisms for loss of autonomy. Palliative care patients perceived and managed their autonomy amidst their illnesses, revealing a sense of loss of autonomy extending beyond healthcare into many daily activities. Participants wished to exercise autonomy in nuanced ways, varying in intensity across many aspects of their lives, underscoring the importance of recognising and respecting individuals' wishes for autonomy.Editor's Note: The authors’ focus on coping with loss of autonomy is essential. As illness progresses, autonomy can erode not only in medical decisions but across daily life, identity, and meaning—losses that are too often overlooked in clinical care. The frequently misapplied “Five Stages of Grief” can further blur this reality, reducing complex, personal experiences to linear expectations not supported by contemporary grief research. Understanding how patients adapt to loss of autonomy is foundational to truly person-centered palliative care.

Advance care planning in patients nearing the end of life: A pre-intervention study of racial disparities and provider factors Journal of General Internal Medicine | Springer; by Vedha Penmetcha BA, Mia Marcotte BA, Yashaswani Chauhan MD, Malathi Srinivasan MD, Adrian M. Bacong PhD, Amelia Sattler MD; 1/19/26 The pre-intervention study of Advance Care Planning (ACP) in patients nearing the end of life highlighted significant racial disparities and the impact of provider factors on ACP documentation. The study found that Asian patients were least likely to have ACP documentation in their charts, and minorities who had ACP conversations were less likely to have documentation. This suggests that ACP conversations are often not documented in the electronic health records of these patients, indicating a need for targeted interventions to improve ACP documentation rates. The study also revealed that providers may struggle to identify who and when to engage in ACP conversations, which can be a barrier to effective ACP.

Ending well – health care planning for the future Detroit PBS, Detroit, MI; by Marty Fischhoff; 1/16/26 Four years ago, Susan Major was diagnosed with advanced pancreatic cancer. Faced with this devastating news, she immediately took action, spelling out the health care treatment that she wished to receive. It helped ease the burden on her loved ones who might have to speak for her when she was no longer able. Major sat down with One Detroit, along with her sister and main caregiver, Marcia Major, to discuss the choices she has made and how they have helped her cope with her illness.

Ethics roundtable: Prescribing controlled substances in a terminally ill patient with suspected substance abuse disorder and opioid agreement violations American Journal of Hospice and Palliative Medicine; by Steven J Baumrucker, MD, FAAFP, FAAHPM, HMDC, Melissa Broome, MSN, APRN, FNP-C, ACHPN, Gregory T Carter, MD, Matt Stolick, Ph.D,  Scott P Boyles, MDiv, Gregg VandeKieft, MD, MA, Andrew Wampler, JD, Lindsay Wilson, DO, FAAFP, Carolyn George, PsyD, Matthew A Murphy, MD, and Saima Rashid, MD; January 2026 This ethics roundtable examines how clinicians should navigate prescribing controlled substances for a terminally ill patient with suspected substance use disorder and opioid agreement violations. Contributors explore the ethical tension between alleviating suffering and minimizing harm, questioning how opioid agreements apply in end-of-life care and emphasizing individualized, compassionate decision-making grounded in dignity, trust, and proportional risk.

[Uganda] This hospice has a bold new mission: saving lives Alabama Public Radio / NPR; by Joanne Cavanaugh Simpson, Brian Simpson; 1/16/26 Deborah Nantenza learned about cervical cancer screening at a hospital in eastern Uganda, a rural region where early diagnosis is rare. ... The cancer screening, education and treatment were led by a hospice — an institution traditionally limited to easing the pain of the dying. The team at Rays of Hope Hospice Jinja in Uganda had long wanted to do more. Even with liquid morphine and other pain medications the hospice provided to ease symptoms, women with cervical cancer "didn't just die a normal death. They died after suffering, suffering," says Sylvia Nakami, executive director of the 20-year-old nonprofit.

What is palliative medicine and why is it so misunderstood? MedPage Today's KevinMD.com; by Patricia M. Fogelman, DNP; 1/16/26 After years of leading palliative medicine departments, as a Fellow of the American Academy of Hospice and Palliative Medicine, I’ve had countless conversations that start the same way. A colleague in the hallway says, “Oh, palliative care—that’s so important. You all are so nice.” Or a hospital administrator tells me, “We wish we could give you more, but resources are tight right now.” Or my personal favorite: “Palliative care is great, but this patient isn’t ready for that yet.” Each time, I smile and nod, but inside I’m thinking: I used to say the same things before I came into palliative medicine, because once upon a time, I also had no idea what we actually do. 

Neuropalliative care in movement disordersContinuum: Lifelong Learning in Neurology; by Benzi M Kluger; 12/25Over the past decade, significant progress has been made to advance palliative care approaches for patients with Parkinson disease and other movement disorders. This population has significant palliative care needs that are poorly met under traditional models of care, including nonmotor symptom management, advance care planning, psychosocial support, spiritual and existential support, care partner support, and timely referrals for specialist and end-of-life palliative care (hospice). Clinical trials demonstrate that specialist palliative care can improve many patient and family outcomes. Neurologists can use the five-pillars framework (nonmotor symptoms, advance care planning, psychosocial and spiritual support, care partner support, and timely involvement of specialist palliative care) to systematically address common sources of suffering that are poorly recognized in traditional models of care. This framework can be integrated into previsit screening forms and note templates to improve the detection of palliative issues.

No time like the present: End-of-life simulation in the first semester of a 12-month accelerated baccalaureate nursing programJournal of Hospice & Palliative Nursing; by Alexander T Wolf, Karen L Hunt, Maura D Penfield; 12/25Accelerated nursing programs face unique challenges in incorporating palliative care. This report describes a high-fidelity home hospice simulation developed for first-semester students in a 12-month accelerated baccalaureate nursing program in the northeastern United States. The simulation integrated foundational nursing skills with palliative care competencies. Thematic analysis of student reflections revealed 5 emerging themes: pain management, empathy, family involvement, communication, and knowledge and preparation. Despite challenges in creating a realistic home environment, the simulation provided valuable hands-on experience in palliative care, demonstrating the potential for early curricular integration of these crucial skills.

Google AI overviews put people at risk of harm with misleading health advice The Guardian; by Andrew Gregory; 1/2/26 People are being put at risk of harm by false and misleading health information in Google’s artificial intelligence summaries, a Guardian investigation has found. The company has said its AI Overviews, which use generative AI to provide snapshots of essential information about a topic or question, are “helpful” and “reliable”. But some of the summaries, which appear at the top of search results, served up inaccurate health information and put people at risk of harm. ...

Dying with dignity - personal perspective: The sacred ending we don’t talk about enough. Psychology Today; by Cynthia Chen-Joea DO, MPH, FAAFP, DABOM; 12/24/25 In the U.S., we spend enormous amounts of energy keeping people alive, curing, fixing, and prolonging life at all costs. What we rarely talk about is how people die. And more importantly, how poorly our system supports them when the end is clearly approaching. ... [Background story about her dad's Parkinson's and eventual death] ... Then came our request for hospice. After an evaluation, we were told he didn’t “qualify” because he had gained some weight and his albumin levels were “too high.” An arbitrary checklist, based on labs values, prevented him from getting into hospice. [Keep reading] So we tried for palliative care instead. I made call after call, only to be bounced between departments, many unclear on the difference between hospice and palliative care, ... Even as a physician, I was stunned by how many barriers we encountered simply trying to do the most humane thing: to advocate for dignity, comfort, and respect at the end of my father’s life.

Ready or not: Rapp at Home program is changing aging’s last chapter Rappahannock News, Washington, VA; by Daphne Hutchinson; 1/4/26 Huntly resident Gwen Bates is good at getting people together. So when Rapp at Home (RaH), the county’s “senior village,” learned of a new program designed to help older adults navigate and plan for later life, Bates volunteered to organize the multi-faceted effort in Rappahannock.  “She took the ball and ran with it,” RaH president Joyce Wenger says. Called Ready or Not (RON), the program was developed by Queen Anne’s at Home (QAH), a senior village located in Queen Anne’s County, Md. on the Eastern Shore of the Chesapeake Bay.