Literature Review

Not everything is delirium at the end of life: A case reportAnnals of Palliative Medicine; by Daniel Gilbey, Eduardo Bruera, Patricia S Bramati; 9/25In this report, we highlight the challenges faced by clinical teams diagnosing and managing delirium, in particular when a language barrier is present. Case description: A patient in his late sixties with low English proficiency with a metastatic neuroendocrine tumor was transferred to a palliative care unit on non-invasive bilevel ventilation. He appeared to become delirious and agitated, trying to remove the face mask, wriggling in bed, and tapping the bedrails. Haloperidol and lorazepam were required when non pharmacological interventions failed to calm him down. The following morning, the patient was able to explain that the positive-pressure facemask was suffocating him and that he could not breathe. So, he was transitioned to high-flow oxygen via nasal cannula, and within a few hours, his respiratory distress significantly improved, and he regained his previous self.

[UK] From living well to dying well with dementia: The significance of an expanded understanding of loss for end-of-life carePalliative Care and Social Practice; by Joseph M Sawyer, Paul Higgs; 9/25As rates of dementia increase, the need for care is clear. Understanding what this looks like and how people might orientate the narratives and practices of care against a universally relatable version of success is less clear cut yet seems crucial if we are to progress towards an ideal of care that allows for a 'good' or 'dignified' death with palliative care. With this as a central focus, the paper examines the orientating principles that govern the current approach to dementia care. We map the evolution in academic theory from deficit-based models of care that identify impairments as a means to building resources to counter them, towards capacity-oriented approaches that focus on accommodating the new experiences that dementia brings. Where conventionally dementia has been viewed through the reductionist lens of being either a biological or social challenge to which there should be a matching solution, it is perhaps more useful to look at it from the inside out, to learn the lessons that dementia and its associated vulnerabilities may hold for humanity.

[Spain] Mapping palliative care for people living with advanced cancer in phase 1 clinical trials: A scoping reviewPalliative Medicine; by Diego Candelmi, Alazne Belar, Carla Zapata Del Mar, Ana Landa-Magdalena, Anna Vilalta-Lacarra, Mariano Ponz-Sarvisé, Carlos Centeno; 9/25This review highlights the unique needs of patients and caregivers in Phase 1 Cancer Clinical Trials and the complexities of integrating palliative care. Key results revealed patients' limited life expectancy, high symptom burden, distress and unmet spiritual needs [and]... patients were reluctant to seek prognostic information or engage in end-of-life discussions, complicating advance care planning. End-of-life care involved frequent unscheduled hospital admissions, hospital deaths and late hospice-care referrals. Caregivers experienced significant distress, while healthcare professionals faced barriers to integrating palliative care. Palliative care interventions varied widely in approaches, settings and outcomes.Assistant Editor's note: This article discusses how palliative care could benefit patients that are enrolled in phase 1 clinical trials for cancer. Traditionally, it has not been common practice for palliative care programs to serve these kinds of patients and their loved ones. This represents an opportunity for the expansion of much needed palliative care services.  

End-of-life outcomes and staff visits for hospice recipients residing in assisted living Journal of the American Medical Directors Association; by Wenhan Guo, Shubing Cai, Yue Li, Brian E McGarry, Thomas V Caprio, Helena Temkin-Greener; 9/26/25 Objectives: ... We hypothesized that more frequent staff visits and specific regulatory provisions would be associated with improved EOL outcomes. ... Conclusions and implications: Hospice staffing intensity, especially clinical visits, appears to be associated with EOL outcomes for AL residents. AL state regulations are also associated with hospice quality. These findings underscore the role of both organizational practices and regulatory policy in shaping hospice experiences in AL settings.

Outpatient pediatric palliative care: A national survey of clinic structures and operationsJournal of Pain and Symptom Management; by Ashley Kiefer Autrey, Caroline Stafford, Casie James, Suraj Sarvode Mothi, Elissa G. Miller, Alexis Morvant, Erica C. Kaye; 8/25Despite the rapid growth of pediatric palliative care (PPC) over the past two decades, outpatient pediatric palliative care (OPPC) remains an underdeveloped resource for children living with serious illness and their families. Characterizing the utilization of clinic models and workflow processes among OPPC programs is essential for establishing benchmarks to help improve OPPC operationalization and hospital-specific program development. This paper presents national data to address this gap, with the goal of supporting PPC programs in their efforts to expand service lines to meet the growing needs of patients with serious illness and medical complexity and their families.

The effect of the Care Ecosystem Collaborative Care Model on end-of-life outcomes for people with dementia and their caregiversAmerican Journal of Hospice & Palliative Care; by Lauren J Hunt, Krista L Harrison, Rachel Kiekhofer, Jennifer Merrilees, Alissa B Sideman, Sarah Dulaney, I Elaine Allen, Kirby Lee, Winston Chiong, Sarah M Hooper, Stephen J Bonasera, Tamara L Braley, Bruce L Miller, Katherine L Possin; 8/25Collaborative care models that feature care navigation have been found to have a range of benefit for people with dementia (PWD) and their caregivers, but their effect on end-of-life (EOL) outcomes has not been robustly evaluated. Our primary objective was to evaluate the effect of the Care Ecosystem-a telephone-based collaborative care model for dementia with care navigation-on EOL outcomes for PWD and their caregivers. Compared to Usual Care, Care Ecosystem caregivers had higher ratings of caregiver self-efficacy prior to PWD death ... but caregiver's satisfaction with EOL care did not differ between groups ... Qualitative analysis revealed Care Ecosystem provided helpful emotional and practical support, but participants wanted more anticipatory guidance, more information about hospice care and earlier referral, and better coordination with the healthcare team.

Initiation of pregabalin vs gabapentin and development of heart failureJAMA Network Open; by Elizabeth E. Park, Laura L. Daniel, Alyson L. Dickson, Meghan Corriere, Puran Nepal, Kathi Hall, W. Dale Plummer, William D. Dupont, Katherine T. Murray, C. Michael Stein, Wayne A. Ray, Cecilia P. Chung; 8/25Both pregabalin and gabapentin are common nonopioid medications used to treat chronic pain, which affects up to 30% of patients. Because pregabalin has greater potency than gabapentin in binding to the α2δ subunit of the L-type calcium channel, pregabalin may be associated with an increased risk for heart failure (HF). The findings suggest that pregabalin should be prescribed with caution in older patients with noncancer chronic pain.

Differences in after-death communications: A comparative analysis of unexpected vs. expected deaths and their impact on survivors' grief and perception of deathOmega; by Tess H McCormick, Gwen Grams, Fatma A Wise, Madeline Burns, Ashna Charania, Noelle St Germain-Sehr, Chris Roe, Callum E Cooper, David Lorimer, Evelyn Elsaesser, Jennifer Kim Penberthy; 9/25This study explores changes in grief and fear of death in individuals who reported after death communications (ADC) from people who died unexpectedly or whose death was expected. We found that those bereaved by unexpected loss reported significantly higher levels of uncertainty regarding changes in their fear of death compared to those bereaved by an expected loss. However, no significant differences were found in grief between the two groups. Most participants reported a positive impact of ADC on their bereavement, regardless of the type of loss they experienced.

The silent grief of grandmothers after an out-of-order death-An interpretative phenomenological analysisDeath Studies; by Jordan Robertson, Elizabeth A Cutrer-Párraga, Paul Caldarella, Jeremy B Yorgason, Terrell Young, Erjola Gjini, Sarah Stuart, Savannah Tueller; 9/25This study delves into the lived experiences of grandmothers grappling with grief following the "out-of-order" death of a child, child-in-law, or grandchild ... Findings reveal three key themes: navigating personal grief, intergenerational support dynamics, and reconstructing family identity. Grandmothers oscillate between loss-oriented and restoration-oriented coping, with grief intensity varying by relational proximity-most profound when losing their own child. They provide emotional and practical support to surviving grandchildren, yet their own sorrow is frequently overlooked, fostering isolation. The study suggests the need for enhanced recognition and tailored support for grandmothers, integrating life course theory to address the disruption of off-time deaths, ultimately advocating for a balanced approach to their bereavement process.

[China] "Love over fear": How nostalgic songs and relationship types buffer death anxietyHealth Communication; by Weixi Zeng, Junyi Chen; 8/25From the perspective of terror management theory (TMT), this study examines the potential of music to alleviate death anxiety. Multiple interaction effects among mortality salience, nostalgia, and relationship type indicated that romantic songs - especially nostalgic romantic songs - were more effective in reducing death anxiety than parent-child relationship songs. The findings highlight the defensive function of romantic relationship songs within the TMT framework, offering new insights for clinical interventions and public mental health practices aimed at managing death anxiety.

Living with dementia: To improve lives, we need to change how we think and talk about this experience in aging societies EurekAlert! - AAAS (American Association for the Advancement of Science); peer reviewed publication by The Hastings Center; 9/24/25 To experience or even contemplate dementia raises some of the most profound questions: What does it mean to be a person? How does someone find meaning in life while facing progressive neurological deterioration? ... To improve the lives of our fellow citizens who are living with dementia or providing dementia care, all of us need to pay attention to how we imagine and talk about these interwoven and increasingly common experiences, concludes Living with Dementia: Learning from Cultural Narratives in Aging Societies, a special report published by The Hastings Center for Bioethics. This report responds to calls from health care and social service practitioners for new ways to depict and talk about dementia, a collective term for Alzheimer disease and related dementias. Editor's Note: Click here for free access to multiple articles in this crucial report, such as

[Canada] Availability of respite care almost triples a palliative care patient’s chance of dying at home EurekAlert! - AAAS; News Release by McGill University; 9/22/25 Access to respite services for family caregivers increases a palliative care patient’s probability of dying at home almost threefold, according to a McGill University-led study. Previous surveys suggest most Canadians with a serious illness would prefer to spend the end of their lives at home. ... Funded by Quebec’s health ministry as part of its action plan for equitable access to quality palliative and end-of-life care, the study set out to find which factors matter most in helping patients avoid a transfer to a hospital or palliative care centre in their final days. Respite care – professional help that allows family caregivers to take short breaks –emerged as the strongest predictor, with patients 2.7 times more likely to die at home when it was available.

AI can aid in end-of-life care decisions, but can't replace human teams MarylandToday; by Fid Thompson; 9/19/25 “Would I be surprised if this person were not alive 12 months from now?”  This so-called “surprise question,” combined with clinical risk calculators, helps doctors make decisions about care for patients near the end of life. Increasingly, clinicians also use artificial intelligence (AI) models to predict remaining life expectancy and better inform palliative care decisions. In a recent study out in the Journal of Palliative Medicine, a University of Maryland researcher sought to understand what palliative care teams think about these AI tools that give an estimated life expectancy or prognosis in end-of-life care, and found mixed reactions.