Literature Review
All posts tagged with “Research News | Journal Article.”
[UK] 'It’s like a weight lifted off your shoulders’: A qualitative study of adult carers taking a break
12/13/25 at 03:00 AM[UK] 'It’s like a weight lifted off your shoulders’: A qualitative study of adult carers taking a breakJournal of Family Issues; by Richard Meade, Debbie Cavers, Neneh Rowa-DewarView; 11/25Unpaid carers play a vital role in supporting individuals with life-limiting conditions, yet without adequate support, they risk poor health and burnout. Ten in-depth interviews were conducted with carers who had used temporary institutional respite services in Scotland. Six key themes emerged: ‘Caring is all-consuming’; ‘Caring changes sense of self’; ‘Relief, recovery, repair’; ‘Breaks give carers their lives back (briefly)’; ‘A break doesn’t solve everything’; and ‘Trust in the respite centre is crucial’. Findings indicate that institutional respite care provides overwhelmingly positive experiences for most carers, offering them essential relief and recovery from the demanding nature of caregiving. However, the benefits were often short-lived, with carers expressing a need for longer and more frequent breaks.
Impact of prognostic notifications on inpatient advance care planning: A cluster randomized trial
12/13/25 at 03:00 AMImpact of prognostic notifications on inpatient advance care planning: A cluster randomized trialJournal of Pain and Symptom Management; by Jessica E Ma, Kayla W Kilpatrick, Clemontina A Davenport, Jonathan Walter, Yvonne Acker, Noppon Setji, Maren K Olsen, Mihir Patel, Michael Gao, Matthew Gardner, Jamie Gollon, Mark Sendak, Suresh Balu, David Casarett;12/25A poor prognosis is an important trigger for advance care planning (ACP) conversations, but clinicians often overestimate prognosis... A pragmatic cluster randomized trial... randomized attending physicians on the inpatient medicine team. An email and page notification was sent to physicians randomized to intervention group for admitted patients at high risk of 30-day and 6-month death based on a machine learning model. The notification recommended to have and document an ACP conversation in the electronic health record (EHR)... Patients of physicians randomized to the intervention group were more likely to have a documented ACP conversation by the randomized physician compared to the control group.
The ethical challenge of negative compassion: How excessive empathy in end-of-life care affects decision-making and patient autonomy
12/12/25 at 03:00 AMThe ethical challenge of negative compassion: How excessive empathy in end-of-life care affects decision-making and patient autonomy Journal of Hospice and Palliative Nursing; by Victoria Pérez-Rugosa, Gina Lladó-Jordan, Pablo de Lorena-Quintal, Esther Domínguez-Valdés, Antonia Rodríguez-Rodríguez, Carmen Sarabia-Cobo; 12/11/25 Online ahead of print ... 3 key themes emerged: decision paralysis and emotional overload, conflicts between personal beliefs and professional responsibilities, and institutional barriers to ethical practice. Findings reveal that excessive emotional involvement can hinder the implementation of patients' documented wishes, potentially compromising patient autonomy and increasing caregiver distress. The study highlights the need for institutional policies that support emotional resilience, structured debriefing, and ethics training. ... These insights are highly relevant for palliative nursing practice, offering guidance for supporting staff and upholding patient-centered care in end-of-life settings.
Connecting communities across the globe: Atlas protocol
12/11/25 at 03:00 AMConnecting communities across the globe: Atlas protocol Palliative Care and Social Practice; by Rebecca Newell, Juan Esteban Correa-Morales, Vilma A Tripodoro, Steven Vanderstichelen, Ghauri Aggarwal, Samar Aoun, Erin Das, Farah Demachkieh, James Downar, Silvia Librada, Julieanne Hilbers, Julie Lapenskie, Emmanuel Luyirika, Saif Mohammed, Masanori Mori, Ekkapop Sittiwantana, Libby Sallnow; 12/4/25 ... Eighteen global experts contributed to developing and validating the survey, with 14 of 15 items meeting the Content Validity Index threshold. ... This protocol addresses a critical gap in Public Health Palliative Care literature by providing an inclusive and participatory method to map the compassionate community's landscape. The resulting data will promote visibility, partnerships and future research, supporting greater recognition of global compassionate communities and their contributions to primary palliative care.
Poured out and given: The lived experience of self-care among hospice nurses in rural Appalachia
12/11/25 at 02:00 AMPoured out and given: The lived experience of self-care among hospice nurses in rural Appalachia Journal of Hospice and Palliative Nursing; by Amanda Camden, Sandra P Thomas, Lisa C Lindley, Lisa Davenport, Ali Winters; 12/5/25, Online ahead of print Hospice nurses encounter profound challenges that make self-care both essential and deeply complex. ... The findings suggest that practicing self-care must be augmented by other actions such as systemic changes, caseload limits, leadership training, and structured emotional support systems. This study highlights the urgent need for health care systems to prioritize hospice nurses' well-being and help sustain compassionate nursing care.
Hospitalization experiences among nursing home residents with dementia
12/09/25 at 03:00 AMHospitalization experiences among nursing home residents with dementiaJournal of the American Medical Directors Association; by Jordan M Alpert, Jeffrey D Kovach, Nicholas J Casacchia, David Harris, Ardeshir Hashmi, Luke Dogyun Kim, Silvia Perez-Protto, Matthew A Pappas, Michael B Rothberg; 12/5/25Hospital admissions among nursing home residents with Alzheimer's disease and related dementias (ADRD) are burdensome, expensive, and provide limited clinical benefit. ... Conclusions and implications: Patients undergoing hospital admission suffered distressing experiences, but most patients did not have do-not-resuscitate orders, and referrals to hospice and palliative care were rare. Patients and their family members should be informed about the hospital experience before admission and offered appropriate care services.
Grave decisions: Understanding attitudes and perceptions towards green burial — A review of literature
12/06/25 at 03:45 AMWhy reflexivity matters in the literature of suffering, death, and dying in eating disorders
12/06/25 at 03:40 AMWhy 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.
Quality of death and end-of-life care among stroke patients: A comparative study of Mexican American and non-Hispanic White surrogate decision makers
12/06/25 at 03:35 AMQuality of death and end-of-life care among stroke patients: A comparative study of Mexican American and non-Hispanic White surrogate decision makersEquity Neuroscience; by Imadeddin Hijazi, Lewis B Morgenstern, Robert Michael Miller, Erin Case, Madeline Kwicklis, Darin B Zahuranec; 10/25 Racial and ethnic differences in patterns of end-of-life care have been previously reported, though there has been little work on the quality of end-of-life care in Mexican American (MA) stroke patients. Contrary to our original hypothesis, we did not identify an ethnic difference in surrogate reports of the quality of death and end-of-life care after stroke between MA patients and NHW [non-Hispanic White] patients after adjusting for demographic and clinical factors. This result is encouraging, as it implies that in this community, ethnic disparities in end-of-life care may not be as pronounced as reported in other populations. Furthermore, the high scores on both surveys indicate overall satisfaction with care regardless of ethnicity.
Palliative care needs of adults severely affected by sickle cell disease: A mixed-methods systematic review
12/06/25 at 03:30 AMRacial disparities in premature mortality and unrealized Medicare benefits across US states
12/06/25 at 03:25 AMUtilization of the No One Dies Alone Program to support dying patients
12/06/25 at 03:20 AMUtilization of the No One Dies Alone Program to support dying patientsJournal of Pain & Symptom Management; by Austin Chen, Ketki Sathe, Yixuan C Zhang, Lyndia C Brumback, Addy L Elketami, Jamie T Nomitch, Timothy J Shipe, Cynthia M Thelen, Katherine G Hicks, Ann L Jennerich; 11/25We conducted a retrospective cohort study of hospitalized patients enrolled in the NODA [No One Dies Alone] program at Harborview Medical Center (HMC), a level I trauma center in Seattle, WA. The No One Dies Alone ... program has utilized trained volunteers to provide support to dying patients for over 20 years.The NODA program was utilized for patients with and without family support. Some patients were unable to benefit from the program due to timing of referral relative to death, highlighting the importance of early consultation to maximize program benefits.
Trends in hospice use among older adults with dementia and cancer by race and ethnicity 2011–2021
12/06/25 at 03:15 AMTrends in hospice use among older adults with dementia and cancer by race and ethnicity 2011–2021Journal of the American Geriatrics Society; by Inbal Mayan, Siqi Gan, John Boscardin, Krista L. Harrison, Jennifer E. James, Alexander Smith, Lauren J. Hunt; 11/25Hospice use among older adults has expanded substantially, with more than 1.7 million Medicare beneficiaries enrolled annually. Yet, disparities by race and ethnicity in hospice remain. It is unknown whether these disparities have narrowed over time or whether trends differ by clinical condition. We examined changes in hospice use by race and ethnicity among decedents with dementia and cancer, two common terminal diagnoses with different trajectories and implications for hospice eligibility.
GUIDE and beyond: Strategies for comprehensive dementia care integration
12/06/25 at 03:05 AMGUIDE and beyond: Strategies for comprehensive dementia care integrationJournal of the American Geriatrics Society; by Kristin Lees Haggerty, David B Reuben, Rebecca Stoeckle, David Bass, Malaz Boustani, Carolyn Clevenger, Ian Kremer, David R Lee, Madelyn Johnson, Morgan J Minyo, Katherine L Possin, Quincy M Samus, Lynn Spragens, Lee A Jennings, Gary Epstein-Lubow; 10/25The Centers for Medicare & Medicaid Services' (CMS) Guiding an Improved Dementia Experience (GUIDE) Model represents a landmark opportunity to improve outcomes for persons with dementia and their caregivers and scale comprehensive dementia care through a structured service delivery and alternative payment approach. Drawing from the experiences of six previously tested programs ... we describe a four-step approach to enable successful adoption and implementation: identifying key leaders and partners, preparing a tailored value proposition, initiating program start-up, and ensuring sustainable implementation. We highlight practical tools and resources to address operational challenges, including electronic health record integration, reimbursement strategies, and staff training. By focusing on evidence-based models, health systems and other providers can accelerate implementation, reduce costly emergency and institutional care, and deliver high-quality, person-centered support. This approach can help to empower GUIDE participants and others to build effective, durable, scalable comprehensive dementia care systems, ultimately advancing the goal of establishing such care as a permanent Medicare benefit.
[Italy] "Are we treating the cancer or the person?": A provocative or enlightening question?
12/06/25 at 03:05 AMHospice, palliative care, and care experiences among Medicare beneficiaries with cancer
12/06/25 at 03:00 AMHospice, palliative care, and care experiences among Medicare beneficiaries with cancerJournal of Geriatric Oncology; by Lisa M Lines, Miku Fujita, Kim N Danforth, Daniel H Barch, Michael T Halpern, Michelle A Mollica, David T Eton, Ashley Wilder Smith; 11/25Among 37,025 Medicare beneficiaries with cancer, 11.1 % received hospice (with or without PC) and 7.4 % received PC only. Nearly 30 % of the sample died within five years of diagnosis; fewer than one-third of decedents received hospice. Factors associated with receiving hospice included increasing age, non-Hispanic ethnicity, American Indian/Alaska Native and multiracial identities, living in higher-income neighborhoods, survey-completion proxy assistance, fair/poor general health, advanced stage at diagnosis, and more illness burden. Independent predictors of PC encounters included age 75-79, female identification, no dual enrollment, no proxy assistance, and more illness burden. Differences in care experience associated with hospice or PC use were shown for two care experience measures: doctor communication scores and doctor rating scores were higher among beneficiaries who received neither hospice nor PC relative to beneficiaries who received hospice.
[Italy] The effects of cancer treatments at the end of life: A clinical, ethical, and organizational issue
12/06/25 at 03:00 AMHow clinicians prenatally discuss management options and outcomes for congenital heart disease
12/02/25 at 03:00 AMHow 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.
"Being ill defines your daily life": Social wellbeing of patients residing at home facing an incurable illness and their primary family caregivers
12/02/25 at 03:00 AM"Being ill defines your daily life": Social wellbeing of patients residing at home facing an incurable illness and their primary family caregivers BMC Palliative Care; by Trudy Schutter, Ian Koper, Marieke Groot, Kris Vissers, Jeroen Hasselaar; 11/28/25 Online ahead of print This study demonstrates that meaningful relationships, acknowledgement of one's situation and the ability to determine one's own level of involvement in society are essential for the social wellbeing of patients and family caregivers confronted with incurable illness. ... Furthermore, the quality of communication and relationships with healthcare providers, employers, and institutions, along with the prevailing societal attitudes towards incurable illness, caregiving, death, and dying, is of considerable significance and should be given careful attention.
Respecting the right to refuse: Is decision-making capacity disproportionately challenged in patients declining medical care in order to treat?
11/29/25 at 03:40 AMRespecting the right to refuse: Is decision-making capacity disproportionately challenged in patients declining medical care in order to treat?Journal of Neurosurgery: Case Lessons; by Jacqueline Boyle, Nicholas Comardelle, Alexis Carter, Jeffrey Klopfenstein, Todd McCall; 10/25There is a consensus that withholding aggressive medical care in medically futile situations is ethically sound, even if the patient, surrogate, or family wants everything done. The authors aim to evaluate and discuss the situations in which this request is used as justification for intervention, specifically lifesaving surgery, when a situation is defined by a futile outcome. The authors utilize the illustrative case of an older female who presented with a traumatic brain injury and Duret hemorrhage, an unfortunately common scenario faced by neurosurgeons, to discuss the complex ethical and practical implications of these situations. They seek to define futility, provide an overview of basic medical ethical principles, and evaluate both the motivation to operate and the educational gaps among patients, families, and providers. Review of the basic principles of medical ethics lends to the conclusion that the demands of a patient’s family are not adequate justification for surgical intervention in cases, such as the present one, in which a patient is unlikely to benefit.
S41 Delayed palliative care consultation among veterans with pancreatic cancer: An analysis of patterns and outcomes
11/29/25 at 03:35 AMS41 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.
Slow-tempo music and delirium/coma-free days among older adults undergoing mechanical ventilation-A randomized clinical trial
11/29/25 at 03:30 AMSlow-tempo music and delirium/coma-free days among older adults undergoing mechanical ventilation-A randomized clinical trialJAMA Internal Medicine; by Babar A. Khan, Sikandar H. Khan, Anthony J. Perkins, Annie Heiderscheit, Frederick W. Unverzagt, Sophia Wang, J. Hunter Downs III, Sujuan Gao, Linda L. Chlan; 10/25Objective: To determine if a slow-tempo music (60-80 beats/min) listening intervention decreases delirium duration, delirium severity, pain, or anxiety in older adults undergoing mechanical ventilation. In this randomized clinical trial of 158 mechanically ventilated older adults, a twice-daily music intervention delivered via noise-canceling headphones and tablets for up to 7 days did not demonstrate a statistically significant decrease in delirium duration, delirium severity, pain, or anxiety.
5.2 consultation-Liaison perspectives
11/29/25 at 03:25 AM5.2 consultation-Liaison perspectivesJournal of the American Academy of Child & Adolescent Psychiatry; by Julia A. Kearney;10/25Parents suffer loss and anticipatory grief, struggle with complex medical decision-making, and bear the primary burden of talking to their children about illness, death, and loss. Clinical intervention can: 1) improve communication around child prognosis and medical decision-making; 2) support parents in having open conversations with their children; and 3) directly assess and address parent mental health. Parents and caregivers appreciate resources to address their mental health in pediatric settings, need expertise from clinicians experienced in pediatric illness and palliative care, and need programs to overcome barriers such as parents’ unwillingness or inability to leave their child and the unpredictability of the child’s illness. While nothing can eliminate the suffering and grief of families facing a child’s terminal illness, clinicians can increase hope by helping enhance meaning, connection, trust, and love while reducing guilt and regret.
Heart failure with reduced ejection fraction
11/29/25 at 03:20 AMHeart failure with reduced ejection fractionMedical Clinics of North America; by Ebrahim Barkoudah, Clyde W Yancy; 11/25Heart failure (HF) is no longer centered on the failing ventricle. Various salutary treatment discoveries now support substantially improved survival with lesser likelihood for urgent care or hospitalization. Advanced care strategies are effective, but not only includes mechanical circulatory assist and heart transplantation, but also clinical trial participation, palliative care, and hospice. At the patient level, longer healthier lives, in concert with expert management of ventricular dysfunction, becomes the contemporary expectation.
