Literature Review

Terminally ill Stanford professor teaches class about dying from cancerCBS News, Bay Area, CA; by Elizabeth Cook; 3/13/25 A Stanford University professor's new curriculum explores the multiple aspects and phases of a person dying of cancer, and it comes from a person with first-hand knowledge. Dr. Bryant Lin has been a professor for almost two decades. He's used to being the teacher, not the subject of his classes. But that all changed in 2024 when he was diagnosed with stage 4 lung cancer. ... The diagnosis was a dose of cruel irony. Lin co-founded the Center for Asian Health Research and Education. One of the priorities for the foundation is researching non-small cell adenocarcinoma, also known as "never-smoker lung cancer," the same cancer diagnosis that Lin received. ... The class is called "From diagnosis to dialogue: A doctor's real-time battle with cancer." Within minutes of being posted, the class and the waitlist were full. ... The 10-week course covers the entire spectrum of cancer as seen through the eyes of someone who is living it. ... Stanford University recorded every session of the class so that they could live on for future physicians. If you would like to watch them, they can be found on YouTube. 

Home Health Aides caring for adults with heart failure-A pilot randomized clinical trialJAMA Network Open; by Madeline R. Sterling, Cisco G. Espinosa, Sasha Vergez, Margaret V. McDonald, Joanna Ringel, Jonathan N. Tobin, Samprit Banerjee, Nicola Dell, Lisa M. Kern, Monika M. Safford; 11/25Objective: To examine the effectiveness of an education- and communication-based intervention among HHAs caring for patients with HF.  In this pilot randomized clinical trial including 102 agency-employed HHAs randomized to training alone or in addition to an application that allowed HHAs to exchange text messages with nurse supervisors, training improved HHAs’ HF knowledge and HF caregiving self-efficacy. The addition of the application did not improve these primary outcomes, but it significantly reduced HHAs’ self-reported preventable 911 calls, a secondary outcome.

Managing competing interests between appointed surrogates and extended family in end-of-life care available to purchaseAmerican Academy of Pediatrics; by Derek R. Soled, Elizabeth Lanphier, Ianthe R.M. Schepel, Maya Scott; 11/25This Ethics Rounds article brings together perspectives from a clinical ethicist, 2 resident physicians in pediatrics, and a social worker on a case involving a terminally ill, intubated, and sedated young adult patient whose health care proxy, extended family, and health care team disagree on the course of her care. Although the proxy, the patient’s adult sister, seems to agree in principle with the health care team’s recommendation to withdraw life-sustaining treatment, she is unwilling to consent to withdrawal due to perceived pressure from her extended family. From an ethics perspective, we discuss the concept of the “marginalized decision-maker” and how to blend the “best interests” approach from pediatric medicine with the “substituted judgment” standard applied in adult medicine when making decisions for incapacitated young adult patients. From a clinical perspective, we explore features of this case that may contribute to feelings of moral distress within the medical team, identify best practices for leading team and family meetings to avoid values imposition and promote shared decision-making, and argue for the importance of training physicians in clinical ethics and reflective skills to improve the quality of patient care and reduce experiences of moral distress in the workplace. Finally, we explore the role that family dynamics, families’ culture and values, and past experiences in the health care system can play in shared decision-making conversations.

Perceived value of transfusion access and hospice services among patients with blood cancersJAMA Network Open; by Hari S. Raman, Angel M. Cronin, Scott F. Huntington, Hajime Uno, Caitlin Brennan, Susan Lysaght Hurley, Anna Tidswell, Richard M. Kaufman, Sarah M. Lanahan,  Kimberly S. Johnson, James A. Tulsky, Gregory A. Abel, Oreofe O. Odejide; 11/25In this survey study, our analysis suggests that for many patients with advanced hematologic cancers, the ability to maintain access to blood transfusions is the primary factor in deciding whether to enroll in hospice. Given that the majority of hospices in the US do not provide transfusion access, patients with blood cancers are faced with the impossible choice of preserving access to palliative transfusions vs accessing quality home-based hospice care. This dichotomy between transfusion access and hospice care may contribute to the low rate of hospice use in this population. Our findings underscore the need to develop and test novel hospice delivery models that combine palliative transfusions with routine hospice services to effectively alleviate discomfort and optimize the QOL [quality of life] of patients with blood cancers near the EOL [end of life].Assistant Editor's note: In the calendar year 2024 data from Medicare Hospice claims indicate that only 3.0% of beneficiaries had a blood cancer diagnosis, per Hospice Analytics. This article suggests some great ideas about how hospice can address the expense of blood transfusions with CMS. But until that happens, hospices could consider approaching their local transfusion center about a contract for a reduced price for blood transfusions for patients in need. Ultimately, this will benefit the hospice, the transfusion center (potentially more patients), and most importantly, the patient.

Why reflexivity matters in the literature of suffering, death, and dying in eating disordersJournal of Eating Disorders; by Scout Silverstein; 10/25Current debates on medical aid in dying and treatment futility in longstanding eating disorders emphasize diagnostic frameworks, ethical principles, and legal statutes. What remains underexamined is how an author's own experiences with suffering, death, and dying shape their perspective and conclusions. I argue that every manuscript on end-of-life care, decision-making capacity, or futility in eating disorders should include a reflexivity statement detailing the author's relationship to mortality. By mandating reflexivity disclosures alongside ethics and funding statements, journals can enhance transparency and allow readers to contextualize empirical claims and ethical positions. I propose a template for a reflexivity paragraph in which authors succinctly state their clinical or research focus, experiences with suffering, and forces that shape their views on suffering, futility, and dying.

How clinicians prenatally discuss management options and outcomes for congenital heart disease Journal of Pain and Symptom Management; by Samantha Syme, Kelsey Schweiberger, Judy C Chang, Ann Kavanaugh-McHugh, Nadine A Kasparian, Robert M Arnold, Kelly W Harris; 11/27/25 Online ahead of printA prenatal diagnosis of complex congenital heart disease (cCHD) introduces significant emotional, social, and financial stress for families. ... Fetal cardiology consultations offer an important opportunity to support families navigating uncertainty following a prenatal diagnosis of CHD. Clinicians approached these conversations with empathy and a focus on long-term outcomes, though discussions about management options varied. There is an opportunity for increased presentation and integration of palliative care consultants as a longitudinal, family-centered resource, regardless of mortality risk, which may enhance supports available to families during this highly emotional period.

S41 Delayed palliative care consultation among veterans with pancreatic cancer: An analysis of patterns and outcomesThe American Journal of Gastroenterology; by Adla, Akhil; Walker, Hayes; Whitwell, Samantha; Yn, Louis; Tombazzi, Claudio; 10/25Pancreatic cancer is characterized by a rapid disease progression, and poor overall prognosis, necessitating a comprehensive approach to care. The American Society of Clinical Oncology strongly recommends early palliative care consultation for all advanced pancreatic cancer patients, at the time of diagnosis or within the 8-12 weeks of diagnosis. Timely palliative care involvement has been shown to improve symptom management, mood, and improved survival. Despite these benefits, palliative care referrals are often delayed, limiting the potential impact on patient outcomes. This study reveals a dramatic percentage of patients who did not have palliative care consultations in a timely fashion as recommended by American Society of Clinical Oncology. 

Calendar Year (CY) 2026 End-Stage Renal Disease (ESRD) Prospective Payment System Final Rule CMS Newsroom - Fact Sheets; by CMS; 11/20/25 Key points:

Evaluation and treatment of malignant neuropathic painAmerican Journal of Hospice and Palliative Medicine; by Lillian Boehmer, Belal Dakroub, Glenn Pebanco; 10/25Cancer-related neuropathic pain (CRNP) is difficult to identify, assess, and treat, often requiring higher analgesic needs and resulting in poorer outcomes. Objectives: To evaluate the effectiveness of guideline-directed therapy for CRNP in veterans treated at the West Palm Beach VA Healthcare System (WPB VAHCS) Hematology/Oncology Center and managed as outpatients by a pain and palliative care clinical pharmacy practitioner (CPP). Following CPP intervention, pain scores improved ... and PEG [Pain, Enjoyment, and General Activity] scores improved ... CPP-guided use of guideline-directed therapies significantly improved pain intensity and function in veterans with CRNP. Buprenorphine may reduce medication burden in geriatric patients with multimodal pain, reinforcing its value in structured palliative care models.    

Ophthalmology considerations in end-of-life careCureus; by Mendel Shloush, Akiva Eleff, Eric Eleff; 10/25Ophthalmologic interventions can significantly impact quality of life, even in the context of end-of-life care. This paper explores the ethical and clinical considerations for ophthalmologic treatments in hospice care, with a focus on cataract surgery, age-related macular degeneration (ARMD) therapy, retinal detachment (RD) repair, glaucoma, painful blind eye (PBE) management, benign and surface ocular tumors, and corneal or anterior segment diseases. Ophthalmologic procedures should be considered viable options in end-of-life care when clinically indicated, with careful ethical review. Restoration of vision contributes meaningfully to the quality of life and deserves thoughtful inclusion in care planning.Assistant Editor's note: When a patient is terminally ill on hospice, we focus on the Big-Bad illness-the one likely to cause death. But often patients suffer from other illnesses as well. For example, when my 95-year-old mom was dying from colon cancer and on hospice, she developed a severe corneal abrasion from an inwardly turned eyelid; a comorbid condition that she had endured for many years called entropion. In this case her inwardly turned eyelashes scraped open her cornea. She was in excruciating pain from her eye. Certainly, this condition was unrelated to colon cancer. But her hospice treated her as a whole person, knowing that her eye pain was contributing to her overall suffering. To their credit, the hospice admitted her to their in-patient hospice house for GIP intervention and care. They had to sedate her deeply for several days until the abrasion began to heal. She was then able to go back home and live comfortably until her death from cancer. There is great variability in what hospices consider "related conditions" and what they believe they are responsible for in terms of payment and treatment. In this case, my mom and us family members experienced only gratitude for the holistic and expert hospice care my mom received.

Q&A: Prognostic preferences ‘a swinging pendulum’ for older adults with end-stage kidney disease (ESKD)Healio; by Lucas Laboy and Annie Liu, DO, MPH, MS; 11/17/25 Older adults with end-stage kidney disease and their care partners expressed dynamic prognostic preferences over time, according to study findings published in Clinical Journal of the American Society of Nephrology. Serious conversations with patients with ESKD can be difficult for nephrologists, according to Annie Liu, DO, MPH, MS, associate physician at Mass General Brigham, and colleagues. ... Key themes included: