Literature Review

Tellable and untellable stories in suffering and palliative careMortality; by Maxxine Rattner; 3/19The relief of patients’ suffering – both physical and non-physical – is a primary aim of palliative care, and has been described as an obligation and ethical duty for palliative care providers. This paper suggests that common approaches to relieving patients’ non-physical suffering – such as creating opportunities to make meaning, achieve personal growth, and hone one’s resiliencies – comprise the larger, more tellable part of the palliative care discourse. A more marginal, less tellable part of the discourse acknowledges that some non-physical suffering cannot necessarily be relieved.Publisher's note: Though dated, this article offers an honest perspective on the profound challenge of alleviating suffering, and the essential lesson of humble grace when relief is not possible.

Bridging the gap: A scoping review of clinical decision support systems in end-of-life care for older adults Journal of Palliative Medicine; by Susanny J Beltran, Lainey Dorris, Marie Hamel, Shanelle Harvey, Mustafa Ozkaynak, Kenan Sualp; 11/17/25 online ahead of print Background: ...  This scoping review maps the current landscape of clinical decision support (CDS) systems in EOL care, identifies key system types, and examines their effectiveness in guiding clinical decisions. ... Results: A total of 31 studies were included, categorizing CDS systems into prognostic tools, referral tools, and care informing tools. ...

Human-AI collaborative content analysis: Investigating the efficacy and challenges of LLM-assisted content analysis for TikTok videos on palliative careProceedings of the Association for Information Science & Technology; by Souvick Ghosh, Ketan Malempati, Camille Charette; 10/25Palliative care is frequently misunderstood, yet short videos on social media can help disseminate useful information and build supportive communities. In this study, we propose an iterative LLM-LLM agentic conversational approach to identify palliative care themes from 56 TikTok videos. Our approach identified themes such as Policy, Advocacy, and Access, as well as Emotional Support and Coping while highlighting omissions like Humor and Saying Goodbye, underlining the need for human oversight. The contributions of this work include a new annotated dataset of 242 TikTok videos, a validated LLM-based thematic analysis pipeline, and evidence that combining automated and human-in-the-loop methods enhances reliability and accuracy in short-form video analysis.

Enhancing palliative care integration in the Cardiac Surgical Intensive Care Unit: A multidisciplinary quality improvement projectAmerican Journal of Hospice and Palliative Medicine; by Crystal Hope Bennett Schiano; 10/25The rate of unmet palliative care (PC) needs is high in critical care areas, especially in the surgical patient population, where PC involvement is notoriously late in the patient’s clinical progression. This quality improvement project aimed to evaluate the ability of education, workflow delineation, and an evidence-based assessment tool to improve the integration of PC in a cardiac surgical intensive care unit (TICU). The intervention included education, workflow delineation, and an evidence-based frailty assessment (FA) implementation. The outcomes of this project were similar to those of the existing literature, further revealing that ICUs are challenging care settings in which to connect patients with PC for the first time. Future studies on the effects of FA in the cardiac surgical patient population are warranted to find the most appropriate settings for assessment and associated interventions based on identifying a patient’s frailty.

Allowing natural death in end-of-life decision-makingGeriatric Nursing; by Jodi Erickson, Mary Ann Cantrell, Meredith MacKenzie Greenle; Nov-Dec 2025To act in concordance with the wishes of people who are dying, the healthcare system must empower patients and healthcare professionals to communicate effectively and in a way that minimizes distress for all involved. More specifically, the use of negation in the term “Do Not Resuscitate” (DNR) in EOL decision-making conversations may contribute to the confusion regarding the meaning of the terms in actual clinical practice. The terminology of DNR and sometimes “Do Not Attempt Resuscitation” (DNAR) is utilized in most healthcare settings and is also incorporated into most portable medical orders, such as POLST forms. “Allow Natural Death” (AND) is a term that has been suggested as an alternate to DNR in EOL situations and does appear in some portable medical orders. This quantitative study indicates that healthy adults may prefer the use of AND instead of DNR when having EOL decision making discussions.

An explicit live discharge protocol for hospice-initiated live dischargesJournal of the American Medical Directors Association; by Stephanie P. Wladkowski, Susan Enguidanos, Tracy A. Schroepfer;1/26Hospice-initiated discharges, or those not requested by patients or caregivers, are distinct from voluntary disenrollment from hospice because they often occur without adequate preparation. Hospice patients who have stabilized and been deemed no longer terminal can disrupt continuity of care, leaving patients and their caregivers unprepared for the complex medical, emotional, and logistical needs posthospice. Currently, no standardized guidelines exist to support hospice clinicians in planning for and conducting these live discharges. To address this gap, an explicit live discharge protocol (LDP) was developed to guide hospice clinicians in supporting patients who are no longer eligible to receive hospice and are discharged alive and their caregivers.

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.

[Sweden] Living well with dementia: A qualitative interview study on family caregivers’ call for more person- and family-centered dementia supportBMC Geriatrics; by Pia Bastholm-Rahmner, Katharina Schmidt-Mende, Karin Modig, Monica Bergqvist; 10/25Family members are often the primary caregivers for individuals with dementia, but they face significant challenges in navigating health care and social services, especially as the disease progresses. Many caregivers experience loneliness, social isolation, and stress from sacrificing their own well-being. Three themes were identified [among caregivers]: (1) Struggling with conflicting emotions and social challenges - caregivers reported experiencing stress, physical exhaustion, and emotional strain due to constant availability and the challenges of managing behavioral changes, further intensified by isolation and shrinking social networks, (2) Balancing autonomy in care decisions - caregivers described the paradox of bearing full responsibility for care decisions despite having limited access to information, and, (3) Dependence on home care and nursing homes that are not adapted to needs - caregivers expressed a reliance on home care and nursing homes, yet noted that these services are often ill-equipped to address the specific demands of dementia care. 

Home-delivered nutrition services for older adults under the Older Americans ActJAMA Network Open; Em Balkan, Emily A. Gadbois, Emma L. Tucher, Kimberly P. Bernard, Kali S. Thomas; 9/25... the federal government supports the provision of food to older adults through the Older Americans Act (OAA) Nutrition Program. These funds are used by state and local aging agencies to administer OAA nutrition services primarily through contracts with nonprofit community-based organizations ... [including organizations like] Meals on Wheels (MOW) ... This qualitative study of 54 participants found that home-delivered meals meet the Older Americans Act’s stated goals to (1) reduce hunger, food insecurity, and malnutrition; (2) promote socialization; and (3) promote the health and well-being of older adults. In addition, participants said home-delivered meals improved the health, well-being, and finances of their caregivers. The findings also support funding the Older Americans Act Nutrition Program. 

Trends of palliative care utilization for nontraumatic intracerebral hemorrhage: Analysis of the national inpatient sampleJournal of Clinical Neuroscience; by Andrea Loggini, Victor J Del Brutto, Faddi G Saleh Velez, Jonatan Hornik, Denise Battaglini, Shawn S Wallery, Amber Schwertman, Alejandro Hornik, Christos Lazaridis, Adnan I Qureshi; 10/25We investigated the trends and hospital outcome measures associated with the utilization of consultative palliative care (PC) services among patients with nontraumatic intracerebral hemorrhage (ICH). Of 452,250 ICH cases during the study period, 69,360 (15.3 %) received PC. ... ICH patients receiving PC were older, ...more frequently women, ... White, ... and more likely to be in the highest income quartile ... Conclusions: The use of PC in ICH patients has increased over the past two decades. PC is associated with more efficient healthcare resource utilization and higher odds of discharge to hospice/in-hospital mortality. Disparities in PC utilization persist among underprivileged groups and racial minorities.

Understanding challenges and barriers to quality end-of-life care for patients with hematologic malignancies: A GIMEMA surveyAnnals of Hematology; by Leonardo Potenza, Fabio Efficace, Eleonora Borelli, Paola Fazi, Thomas Baldi, Francesca Tartaglia, Francesco Sparano, Claudio Cartoni, Pasquale Niscola, Claudia Mucciarini, Oreofe Odejide, Eduardo Bruera, Camilla Zimmermann, Marco Vignetti, Mario Luppi, Elena Bandieri; 10/25Patients with hematologic malignancies often receive aggressive end-of-life (EOL) care, which may be partly related to hematologists' discomfort with discontinuing aggressive treatments at EOL. We assessed a cohort of Italian hematological oncologists through a GIMEMA online survey to explore their attitudes toward standard measures of quality EOL care, their opinions on barriers to providing this care, and potential interventions. In conclusion, Italian hematologists find most standard EOL quality measures acceptable, they identify barriers to quality care, and are open to interventions, including early integration of palliative care, to improve patients' EOL care. However, they lack familiarity with GOC [goals of care] and ACP [advance care planning] discussions, highlighting the need for communication skills training.

End-of-life care and health promotion in Black and African American religious communities: A systematic reviewThe Journal of Aging & Social Change; by Chesney Ward; 10/25Blacks and African Americans have the highest mortality rates of any racial or ethnic group, yet they are less likely to complete advanced directives in the United States.  This systematic review found that faith-based health promotion for end-of-life planning is an effective strategy for engaging Black Americans in discussing end of-life care despite Black and African Americans’ preference for treatment. By implementing faith-based health promotion in churches, Black Americans are more likely to engage in end-of-life care discussions and complete advanced directives, enhancing their quality of life as they age.

[Australia] Defining the symptoms of personality and behaviour changes in brain tumour patients and their impact on caregiversSupportive Care in Cancer; by Emma McDougall, Haryana M Dhillon, Karin Piil, Lauren J Breen, Anna K Nowak, Sara Nordentoft, Sine Kjærgaard, Georgia K B Halkett; 10/25This study highlights the nuances and complexity in conceptualising personality changes in patients with a brain tumour and the grief, isolation, and safety concerns experienced by carers. Brain tumour-related aggression was identified as a significant concern by both healthcare professionals and carers, lacking clinical guidelines internationally for managing violence and aggression in this population. Future research is required to test interventions and support for safeguarding and risk management for patients and their family members.