Literature Review

Most Americans prefer to die at home, but the US healthcare system often prevents it ArcaMax; by Karen Lutfey Spencer; 7/14/26 Ask people what they want at the end of their lives, and overwhelmingly the answers will revolve around comfort, dignity and time at home with loved ones. Yet the U.S. healthcare system often thwarts these wishes. Most Americans say they want to die at home, but only one-third do. What could be an intentional last chapter may instead become a roller coaster of hospitalizations and decisions made with incomplete information. News headlines reflect the challenges of facing the end of life in crisis mode. ... Unfortunately, these crisis scenarios are happening to millions of families each year.

Utilization of hospice and palliative care among patients with mental illness: a retrospective cohort study Journal of the American Geriatrics Society; by Sean O'Mahony, Utpol Das, Yuanyi Zhang, Anirudh S. Babu, Mukaila A. Raji, James Gerhart, Yong-Fang Kuo; 7/11/26 Background: Individuals with mental illness (MI) experience premature mortality and health disparities, yet little is known about their access to hospice and palliative care. Conclusions: Mental illnesses were associated with complex hospice utilization patterns characterized by longer length-of-stay, higher likelihood of enrollment far from death, lower likelihood of enrollment within 180 days before death, and lower palliative care consultation use in some groups.

Relationships between advance care planning engagement, patients’ religious practices, and spirituality American Journal of Hospice and Palliative Medicine; by Robyn M. Axel-Adams, MS, MDiv, BCC, HEC-C, Emily Fox Ludden, MDiv, MGS, and Alexia M. Torke, MD; 7/2/26Background: Research has shown that people who consider themselves religious have a lower advance directive (AD) completion rate. However, advance care planning (ACP) includes a broader range of activities that are important in determining medical treatments. ... Conclusions: In contrast to prior findings of lower AD completion in more religious individuals, this study found that higher religiosity and spirituality are associated with higher ACP engagement. These results suggest ACP opportunities offered for religious congregations or spirituality focused communities may be especially successful.

Dignity therapy: What matters most in end-of-life care? Medscape; by Irene Salvetti, MD; 7/7/26 ... Many patients, especially in advanced stages of illness, express the fear of no longer being themselves, of becoming a burden, or of losing their sense of meaning, role, and memory. In these experiences, suffering is not merely physical but also related to identity, relationships, and spirituality. The way patients perceive themselves as viewed by others is an important determinant of their sense of dignity. Dignity therapy was developed to give voice to this often-overlooked aspect of the experience of illness. ...  Harvey Max Chochinov introduced dignity therapy as a brief psychotherapeutic intervention for individuals with advanced or terminal illness, with the goal of preserving a sense of personal dignity during times of frailty, dependence, and the approach of death.

[Canada] Palliative care is a fundamental human right TroyMedia; by Rebecca Vachon; 7/6/26 ... Despite the fact that everyone dies, and despite the fact that something like 180,000 Canadians and their families interact with some form of end-of-life care in a year, I keep confronting the perception that palliative care is a niche issue, not one of broad interest. But this reaction only underscores the poll's findings: namely that many Canadians continue to misunderstnad what palliative care is and isn't. On a more positive note, however, when Canadians do understand it, palliative care is, in fact, identified as a priority issue.

Civility requires the willingness to engage - a dispute with a neighbor revealed how much motivation matter The Conversation; by Deborah Mower; 7/2/26 ... I’m an ethicist and moral psychologist who researches moral conviction and civility, which I treat as a respectful approach toward conflict resolution. I’ve spent my career studying misunderstandings and disagreements. I teach students ways to better navigate differing interpretations, complex conversations, moral dilemmas and bitter disputes. Civility research matters for ethics education across every discipline, especially fields such as law or medicine where contentious political and moral disagreements are likely to arise. Consider, for instance, the tense conversations between healthcare professionals who disagree about whether the best course of treatment for a patient is to turn to hospice services.

Gerontology student Hope Niedrich speaks to the heart of life, death, and belief University of North Carolina Greenville (UNCG), Greenville, NC; by Janet Imrick; 7/2/26 “How would you like your mom or dad or your grandma or grandpa to be treated?” That question summarizes the ideology of Hope Niedrich, who just defended her capstone project before  the faculty in UNC Greensboro’s [master's] gerontology program. That research, she hopes, will improve care for aging populations, whether they’re in her care or with another professional or family caregiver. “Hopefully, we can all show up and treat these people like we would want the adults in our lives to be treated,” she says. ... For her capstone, she created educational guides for volunteers to bridge cultural and religious differences and ensure end-of-life patients receive the utmost comfort and dignity.

Mi Casa Hospice Alzheimer’s awareness event brings community together through education and compassion Alice Echo News Journal, Alice, TX; by Pete Vasquez; 6/29/26 Education, compassion, and community came together during the recent Mi Casa Hospice Alzheimer’s Awareness Event, where healthcare professionals, local businesses, caregivers, and community members united with one shared purpose—to raise awareness and support families affected by Alzheimer’s disease. ... Mi Casa Hospice emphasized that when healthcare providers, local businesses, community organizations, and residents work together, they can make a lasting difference in the lives of those impacted by Alzheimer’s disease.

Family caregivers' perspectives on challenges and support needs in hospital-based palliative care for persons living with dementia Baylor Medicine | Texas Medical Center Documents ; by Jung Kwak, Anita Chary, Sarah Stayer, Kwaku Duah Oppong, Sumin Yoon, Snehal Patel, and Elizabeth A Kvale; originally pub 11/17/25, reposted online 6/23/26Palliative care needs of hospitalized persons living with dementia (PLWD) and their family caregivers remain poorly understood. ... Thematic analysis of interviews revealed three themes: the value of palliative care in navigating end-of-life uncertainty in dementia, uncoordinated and reactive care during hospitalization, and lack of guidance for post-hospital transitions. While caregivers valued palliative care for emotional and decision-making support, findings underscore the need for earlier integration and improved coordination across hospital teams to better support families.

Dying without a safety net MedCityNews; by Darren Schulte; 6/21/26 Recently, I reviewed the case of a woman with advanced metastatic breast cancer – we’ll call her Helen. ... As one therapy after another failed, Helen cycled in and out of the hospital: complications from treatment, complications from the cancer itself, and each time the system responded the only way it knew how – rapid escalation, ICU stays, more procedures, more drugs. Finally, a palliative care team was consulted during her last hospitalization. After long family meetings, Helen was discharged to hospice and died days later. Throughout that final year, Helen suffered. No one on her medical team had documented her wishes, preferences, or goals of care. No one had walked her through the trade-offs she faced with each treatment decision. The system did what it was designed to do, and it failed her completely. 

Dying patients shouldn’t have to choose between dia­lysis care and com­fort The Boston Globe, Boston, MA; by Patricia Ramsden; 6/22/26 ... Medi­care cur­rently requires most end-stage kid­ney fail­ure patients to choose between dia­lysis and hos­pice bene­fits. ... People dying from other ter­minal ill­nesses do not face this harsh choice. For sev­eral years, Dia­lysis Clinic, Inc. (DCI), the only national not-for-profit dia­lysis organ­iz­a­tion, has col­lab­or­ated with not-for-profit hos­pice organ­iz­a­tions to offer con­cur­rent pal­li­at­ive dia­lysis and hos­pice care to selec­ted patients in Ten­nessee and West­ern Pennsylvania. A 2026 col­lab­or­a­tion between DCI and Care Dimen­sions, the largest hos­pice pro­vider in the state, expan­ded that model to East­ern Mas­sachu­setts. However, this innov­at­ive pro­gram, rely­ing on phil­an­thropic fund­ing, remains avail­able only to a few patients.

Serious illness care exclusion, disclosure, & trust for older gay men & caregivers in the Deep SouthJournal of Pain & Symptom Management; by Korijna Valenti, Margaret Armstrong, Michael Barnett, Stacy Smallwood, Ronit Elk; 5/26Older gay men in the Deep South experience serious illness within healthcare systems shaped by heteronormativity and structural racism. Although disparities in access and disclosure are documented, less is known about how negative or ambiguous healthcare encounters are interpreted in serious illness settings. Using a community-based participatory research approach, we conducted semi-structured interviews with 16 participants (11 patients aged 50 years or older living with serious illness and 5 caregivers) residing in the Deep South. Five themes emerged: discriminatory experiences and bias, clinician communication gaps, exclusion from decision-making, system-level gaps in care quality, and disclosure, trust, and safety. Participants described overt and subtle forms of bias, dismissal of partners in clinical encounters, rushed or unclear communication, and institutional barriers that intensified vulnerability during serious illness. Black participants more frequently identified racialized experiences and contextualized mistrust within histories of systemic racism.