Literature Review

Patients with advanced cancer often receive treatments that conflict with their goals Healio; by Josh Friedman; 10/20/25 Many patients with advanced cancer who prefer treatment that prioritizes quality of life receive therapies focused on preserving it. A retrospective analysis showed nearly 40% of individuals with advanced cancer who preferred treatment that improved their comfort felt clinicians gave them therapies meant to increase longevity.

Stiff person syndrome in the hospice patient: A case report and discussion  Journal of Palliative Medicine; by Molly Svendsen, B Parker Layton, Shiri Etzioni, Mark Edwin; 10/13/25 Stiff Person Syndrome (SPS) is a rare, progressive autoimmune neurological disorder characterized by painful spasms, muscle rigidity, and heightened sensitivity to external stimuli. Management often relies on therapies that fall outside standard hospice formularies, creating challenges in end-of-life care for affected individuals. ... This case highlights the need for flexible, patient-centered approaches in hospice care for rare neurological conditions like SPS. Continuation of disease-specific therapies for symptom palliation can be ethically and clinically appropriate when integrated with clear goals of care. 

Advance care planning with people living with dementia: Ethical considerations of physicians in the United States and the Netherlands The Journals of Gerontology; by Jingyuan Xu, David R Mehr, Marieke Perry, K Taylor Bosworth, Kate McGough, Wilco P Achterberg, Hanneke Smaling, Jenny T van der Steen; 8/25Interviews with 50 Dutch physicians and 47 American physicians and 3 nurse practitioners generated three themes of ethical considerations: 1) Respecting the autonomy of the person with dementia, 2) Rationality as the basis for decisions and subsequent actions, and 3) Minimizing burden and suffering. The complexity of ACP [advance care planning] for people living with dementia is reflected in the challenges within each ethical consideration and the tensions between them, especially between autonomy and rationality. We recommend an approach to ACP that balances the ethical considerations, focusing on the values of the people living with dementia and allowing flexibility in future decision-making to take the current best interest of the person into account.

What does it mean to be human in the age of AI? The Hastings Center for Bioethics - The Big Question; host Vardit Ravitsky with Insoo Hyun; 9/3/25 What are the moral and philosophical challenges we face as AI advances and humans navigate aging, end-of-life care, and cognitive decline? “We’re at a turning point because for the first time in the history of either our planet or our species we are seeing the emergence of a nonhuman intelligence,” says Hastings Center President Vardit Ravitsky in conversation with Hastings Center Fellow Insoo Hyun of the Museum of Science in Boston in the latest episode of The Big Question. 

[Global] Palliative care for special populations ehospice; by Howard Kinyua; 9/1/25

Hospice was meant to offer dignity in death — but it fails the most marginalized. We need hospice programs that go to the streets, into shelters, behind barsSTAT; by Christopher M. Smith; 8/26/25I’ve spent more than a decade in hospice care, sitting at the bedsides of people facing the final days of their lives. I’ve held hands in hospital rooms, in tents, in prison cells, and in homes that barely qualify as such. And over time, I’ve come to see that dying in America is not just a medical event — it’s a mirror. It reflects everything we’ve failed to do for the living. Hospice was created to bring dignity to the dying — to manage pain, provide emotional and spiritual support, and ease the final passage for people with terminal illness. But the systems surrounding hospice care are riddled with inequity. The very people most in need of compassion — the unhoused, the incarcerated, people of color, LGBTQ+ individuals, and people with disabilities — are systematically excluded, underserved, or erased. Access to a good death is too often reserved for the privileged, while everyone else is left to navigate a system that wasn’t built for them — or worse, actively works against them... The truth is, hospice care cannot achieve its mission unless it actively addresses the inequities built into the structures around it. We need hospice programs that go to the streets, into shelters, behind bars. We need training rooted in cultural humility, in antiracism, in trauma-informed care. We need to reimagine what it means to offer dignity to someone whose life has been defined by abandonment... Because dying is universal. But justice, even at the end of life, is still not.Publisher's note: STAT also references Dr. Ira Byock's article "The hospice industry needs major reforms. It should start with apologies, 8/22/23".

This test tells you more about your heart attack risk KFF Health News; by Paula Span; 8/1/25 A long list of Lynda Hollander’s paternal relatives had heart disease, and several had undergone major surgeries. ... A cardiologist told Hollander that based on factors like age, sex, cholesterol, and blood pressure, she faced a moderate risk of a major cardiac event, like a heart attack, within the next 10 years. ... Her doctor explained that a coronary artery calcium test, ... could provide a more precise estimate of her risk of atherosclerotic heart disease. “The test is used by more people every year,” said Michael Blaha, co-director of the preventive cardiology program at Johns Hopkins University. Calcium scans quadrupled from 2006 to 2017, his research team reported, and Google searches for related terms have risen even more sharply. Yet “it’s still being underused compared to its value,” he said. One reason is that although the test is comparatively inexpensive ...Editor's Note: Good news. This test predicts and protects heart health, potentially providing extra years of good (or at least better) quality of life. Bad news. It is "being underused compared to its value," partly because "the test is comparatively inexpensive"? Bad news. What does the low-cost factor say ethics, choices, and quality of life? Good news. Because of my family's cardiac history, my physician recently recommended I take this test. I did, and received great results! I move into the future with greater confidence, less fear, and more gratitude for the some 100,00 heartbeats we each experience, each day.

Ethics of overtreatment and undertreatment in older adults with cancerBMC Medical Ethics; by Clark DuMontier, William Dale, Anna C. Revette, Jane Roberts, Ameya Sanyal, Neha Perumal, Eric C. Blackstone, Hajime Uno, Mary I. Whitehead, Lewis Mustian, Tammy T. Hshieh, Jane A. Driver, Gregory A. Abel; 7/25This modified Delphi study convened a panel of experts in biomedical ethics and reached consensus that the principles of beneficence, non-maleficence, and autonomy are related to our previously proposed definitions of over- and undertreatment in older adults with cancer. The panel also reached consensus that, in most cases, it is unethical to make a treatment recommendation without (1) formal assessment of patient frailty (e.g., via a geriatric assessment) and (2) the opportunity for a patient to share their values, goals, and/or preferences. The panel did not reach consensus regarding the relationship between justice and over-/undertreatment; however, the panel concluded that justice applies to undertreatment when an oncologist withholds potentially beneficial cancer treatment in an older patient based on their age alone.

Closing the gap: Addressing social determinants of health and racial disparities in hospice care Teleios Collaborative Network (TCN); by Alyson Cutshall; 8/4/25... While Americans’ health trajectories are inevitable at the time they become eligible for hospice services, SDOH (Social Determinants of Health) still play a major role for the patients and families our field is privileged to serve. ... [To] fully impact health equity, we must be cognizant of other examples of SDOH, such as racism and implicit bias.  Unfortunately, our collective field has not been as successful in addressing access to hospice care across differing racial and ethnic groups. ... Certainly, there are some pockets of improved access.  One Teleios member organization, Ancora Compassionate Care, recognized the alarming disparities within its community and set about to create change. Ancora leaders recognized that the Black community in their service area typically placed high trust in their religious leaders. To better understand their needs and preferences regarding end-of-life care and services, Ancora embarked on a "listening tour" to gather feedback and insights from these religious leaders. Using the wisdom imparted, Ancora adapted their care delivery to be more inclusive to the Black community.  As such, the organization is making incremental improvements in lessening the racial divide in access to hospice care.

Tennessee plans to execute inmate amid concerns his heart implant will shock him repeatedly CNN; by Dakin Andone; 8/4/25 Tennessee plans to execute Byron Black on Tuesday for the 1988 murders of a woman and her two young daughters, despite concerns from his attorneys that a device implanted to restore his heartbeat could repeatedly shock him as he’s put to death. The device – an implantable cardioverter-defibrillator, or ICD – is at the center of a court battle that has been unfolding for several weeks. Black’s attorneys want the device deactivated at or immediately before his lethal injection Tuesday morning. If it isn’t, they say the effects of the lethal injection drugs will cause the ICD to shock Black’s heart, perhaps repeatedly, in an attempt to restore it to a normal rhythm. This will cause Black a prolonged and torturous execution, the attorneys argue, violating Eighth Amendment protections against cruel and unusual punishment.Editor's Note: Though this is not a hospice case, this traumatic scenario for persons with implantable cardioverter-defibrillator being repeatedly shocked--even after death--is crucial for the hospice interdisciplinary to know. Clinical, ethical, and legal issues abound. Click here for Shocked at End-of-Life: An Educational Video for Hospice Workers about Implantable Cardioverter-Defibrillators, research published by the Journal of Pain and Symptom Management, May 2024.

[Sweden] Ethical reflection: The palliative care ethos and patients who refuse informationPalliative Care & Social Practice; Joar Björk; 7/25Situations wherein a patient refuses potentially important information present tricky ethical challenges for palliative care staff. Taken as a whole, the palliative care ethos seems to recommend a strategy of using communication skills and time to try to get information across to the patient without forcing things. The recommendation is nuanced and highly contextualised, which increases its validity for clinical practice. Some meta-ethical questions are discussed regarding the use of the palliative care ethos as a source of guidance in ethically challenging clinical situations.

Why terminal cancer patients still receive aggressive treatment MedPageToday; by M. Bennet Broner; 7/31/25 Recently, researchers examined whether there had been any changes in the way terminal cancer patients died from 2014 to 2019, given the increased information available on hospice, palliative care, and advanced end-of-life planning (EOLP). They asked whether those who were terminal continued aggressive treatment until their demise. The authors anticipated a decrease in this, but found that the frequency of cancer patients who continued aggressive therapy had not declined. The study did not examine decision-making. Still, the researchers, based on other studies, theorized that the lack of change resulted from a confluence of physician and patient factors. ... [Physicians] might predict a more optimistic prognosis than justified, avoid discussing EOLP, support (over)intensive treatment, and/or overemphasize treatment effectiveness while minimizing its side effects. Oftentimes, given their statements, physicians will offer treatments they know to be of little value, believing that patients expect them to propose something rather than admit there was nothing realistic left to offer.Editor's Note: Pair this with our recent post, Doctors’ own end-of-life choices defy common medical practice.

Prairie Doc Perspective: Navigating spiritual pain and grief Rawlins Times - Prairie Doc Perspective, Rawlins, WY; by Rev. Kari Sansgaard, Avera Hospice; 7/23/25 After nearly 20 years of parish ministry, I entered the world of health care, which, I learned, abounds in acronyms. My first clue was in chaplaincy training, known as CPE (Clinical Pastoral Education), the required education for most hospital and hospice chaplains. CNA, SoB (Shortness of Breath), PRN, HoH (Hard of Hearing), and a myriad of other acronyms are now part of my own vernacular. QoL (Quality of Life) is the big one in hospice, sometimes called “comfort care.” When quantity of life becomes diminished, it’s all about quality. ... In hospice, when death is impending, spiritual pain can lead us to ponder existential questions, such as the following: