Literature Review

Interprofessional advance care planning to enhance end-of-life care: A community assessmentCreighton Journal of Collaborative Practice and Education; Meghan Potthoff, Amanda Kirkpatrick, Jenny Jessen, Cathy Fox, Victoria Haneman, Megan Piotrowski, Beatriz Rodriguez, Sydney Langlois; 3/25Lawyers and financial planners are more often sought for estate directives than primary care providers for end-of life planning. Lack of role clarity and divergent views about advance care planning (ACP) responsibility among healthcare providers lead to further delay of these important discussions. A qualitative, exploratory design was employed to investigate ACP understanding, barriers, and needs among aging Nebraskans and Omaha-metro community agencies that serve these consumers. Conclusions: Improved ACP discussions are needed for supporting value-aligned end-of-life care by educating aging adults about, and documenting their wishes for, life-sustaining treatments and other decisions surrounding death. Enhanced role clarity, increased competence, and a collaborative approach are needed among interprofessional team members involved to improve these end-of-life discussions. 

Perioperative integration of palliative care and urology for patients with serious urologic illness: A qualitative need finding inquiryJournal of Pain and Symptom Management; Bhagvat J Maheta, Nainwant K Singh, Jonathan Bergman, Cati G Brown-Johnson, Alekhya Gunturi, Nickolas Interrante, John T Leppert, Karl A Lorenz, Isabella G Raspi, Karleen F Giannitrapani; 3/25Many urologic serious illnesses are treated with surgical procedures, which may put patients at a further risk of diminished quality of life. [We] purposefully sampled urologists, palliative care physicians, and clinical team members at fourteen geographically distributed Veteran Health Administration sites. We identified one general overall theme, to "change culture" so that PC [palliative care] is not a "last resort" ... Utilizing telehealth and team member role expansion when discussing the initial diagnosis, with surgery as a potential treatment option, allows for multiple conversations ... Creating a process to ensure goal of care conversations occur, since "urologic procedures can have complications that significantly impact quality of life" ... [and] during the pre-operative visits, interdisciplinary input and evaluation of the patient prior to surgery allows the patient to "have a sort of joint meeting with us and the urologist."

Impact of outpatient palliative care services on resource utilization and cost management in a capitated Medicare populationJournal of Palliative Medicine; Parag Bharadwaj, Gagandeep Gill, Nathan Dyjack, Lindsay Fahnestock, Lorie D'Amore, Shuinn Chang, Nancy Hanna, Tanya Dansky, Gwyn Merz, Annamarie Jones, David Kim, Manjit Randhawa; 3/25The integration of palliative care into the U.S. health care system has grown significantly, with outpatient palliative care services (OPCSs) playing an increasingly vital role in managing patients with serious illnesses. Results [of this study] demonstrate substantial growth in OPCS enrollment, with a 129% increase from 2019 to 2023. Per-member-per-month costs showed a sustained reduction, with a 23% decrease by 2023. In addition, there were consistent reductions in ED [emergency department] visits and IP [in-patient] admissions, indicating effective outpatient care management. Patients transitioning from OPCS to hospice exhibited longer hospice stays, further emphasizing the benefits of early palliative care interventions.

[Germany] Do we have a knowledge gap with our patients?-On the problems of knowledge transfer and the implications at the end of lifeInternational Journal of Environmental Research and Public Health; Nils Heuser, Hendrik Heers, Martin Gschnell, Fabian Urhahn, Severin Schrade, Christian Volberg; 2/25Cancer patients are often unaware of their exact diagnosis, stage of disease, and prognosis. In the patients observed, it was found that many of them were unaware of their stage of disease, which can have a huge impact on their end-of-life decisions, such as the type of treatment they want. Many patients were also unaware of their own treatment. There is a risk that false hopes of cure may be attached to therapies and that, as a result, patients may be less likely to opt for palliative care with a focus on maintaining quality of life.

Primary palliative care in assisted living and residential care-A metasynthesisJournal of Hospice & Palliative Nursing; David, Daniel PhD, MS, BSN; Jimenez, Vanessa MPH, BS; Brody, Abraham A. PhD, RN, FAAN; 3/25Assisted living (AL) and residential care (RC) settings are experiencing substantial growth as older adults with lower care needs seek alternatives to nursing homes. Despite this trend, there is a lack of skilled nursing care to support palliative care (PC) in these environments. Studies highlighted challenges and opportunities for delivering primary PC in these environments, emphasizing the importance of addressing physical symptoms, psychological distress, social isolation, and spiritual needs among residents with serious illnesses. The metasynthesis underscores the critical role of primary PC in enhancing quality of life and care continuity for older adults residing in AL/RC settings. It also identifies gaps in current practices and emphasizes the need for tailored interventions and training to support care providers in delivering comprehensive PC to this population. By integrating qualitative research findings with the National Consensus Project guidelines, this metasynthesis provides a comprehensive overview of primary PC in AL/RC settings.

Palliative care in the intensive care unit: An integrative review of intensive care unit health care professionals' views and experiences Dimensions of Critical Care Nursing (DCCN); by Berit Lindahl and Susan Kirk; May-Jun 2025 ... Our findings suggest there is variation in how palliative care in the ICU is conceptualized and interpreted. Intensive care unit professionals need enhanced competencies and training to develop their confidence in providing palliative care and improve role clarity. Such training should focus on serious illness conversations with patients/families and interdisciplinary teamwork. Integration of palliative consultants into the ICU could be further developed.

Bioethics Artificial Intelligence Advisory (BAIA): An Agentic Artificial Intelligence (AI) framework for bioethical clinical decision support Cureus; by Taposh P. Dutta Roy; 3/12/25 Healthcare professionals face complex ethical dilemmas in clinical settings in cases involving end-of-life care, informed consent, and surrogate decision-making. These nuanced situations often lead to moral distress among care providers. This paper introduces the Bioethics Artificial Intelligence Advisory (BAIA) framework, a novel and innovative approach that leverages artificial intelligence (AI) to support clinical ethical decision-making. The BAIA framework integrates multiple bioethical approaches, including principlism, casuistry, and narrative ethics, with advanced AI capabilities to provide comprehensive decision support. 

Children as living solid organ donors: Ethical discussion and model hospital policy statementThe Journal of Clinical Ethics; Gyan C. Moorthy, Aidan P. Crowley, and Sandra Amaral' Spring 2025In recent years, more attention has been paid to living donation as a means to reduce the suffering of individuals with end-stage kidney or liver disease. Implicated ethical issues include medical risk and risk of coercion, counterbalanced by improved medical outcomes and the benefits of saving a life. Living donation becomes particularly ethically complicated with the prospect of child donation, given the child’s developing autonomy and uniquely dependent status. We outline four broad ethical considerations pertinent to living child organ donation: (1) beneficence, (2) respect for the family as a moral unit, (3) respect for the child as a person, and (4) justice. We conclude that it can be ethical for a healthy child to donate a kidney or liver lobe to a close relative who has exhausted other options provided that certain protections are put into place.

[Canada] Death doulas’ experiences with and perspectives on unusual end-of-life phenomenaOmega-Journal of Death and Dying; Stephen Claxton-Oldfield, Madeleine de Ste-Croix Killoran; 2/25In this article, the term ‘unusual end-of-life phenomena’ (EOLP) is used to refer to extraordinary experiences that can happen when someone is approaching death, at the time of death, and after death. Consistent with the results of previous studies involving people who work with the dying (i.e., doctors, nurses, hospice palliative care volunteers, nursing home staff) death doulas had commonly observed or been told about various EOLP in their work supporting people through the dying process. Deathbed visions were the most witnessed and reported EOLP. Death doulas indicated that they were comfortable talking about EOLP with their clients and clients’ families and most or almost all endorsed spiritual or transpersonal explanations for EOLP over scientific or medical ones. Death doulas have an important role to play in normalizing, validating, and educating their clients and clients’ families about EOLP.

Quality of life in heart failure. The heart of the matter. A scientific statement of the Heart Failure Association and the European Association of Preventive Cardiology of the European Society of CardiologyEuropean Journal of Heart Failure; Maurizio Volterrani, Geza Halasz, Stamatis Adamopoulos, Pier Giuseppe Agostoni, Javed Butler, Andrew J.S. Coats, Alan Cohen-Solal, Wolfram Doehner, Gerasimos Filippatos, Ewa Jankowska, Carolyn S.P. Lam, Ekaterini Lambrinou, Lars H. Lund, Giuseppe Rosano, Marco Metra, Stefania Paolillo, Pasquale Perrone Filardi, Amina Rakisheva, Gianluigi Savarese, Petar Seferovic, Carlo Gabriele Tocchetti, Massimo Piepoli; 3/25 Patients with heart failure (HF) experience much worse QoL [quality of life] and effort intolerance than both the general population and people with other chronic conditions, since they present a range of physical and psychological symptoms, including shortness of breath, chest discomfort, fatigue, fluid congestion, trouble with sleeping, and depression. The importance of QoL for patients with HF is highlighted in a survey showing that 61% attached more weight to QoL over longevity, with 9% and 14% willing to trade 6 and 12 months, respectively, for perfect health and better QoL.It is for these reasons that the Heart Failure Association is developing a new score for QoL in HF, sensitive to mechanism-specific interventions and tailored to be sensitive to changes within individual patients. 

[Austria] Influence of prior knowledge and experience on willingness to pay for home hospice services: a contingent valuation study International Journal of Health Economics and Management; Caroline Steigenberger, Andrea M Leiter, Uwe Siebert, Claudia Schusterschitz, Magdalena Flatscher-Thoeni; 3/25/25 Home hospice services contribute to dying in dignity by addressing medical and social needs at the end of life. ... We aim to quantify the benefits of home hospice services to society using society's monetary valuation and examine the influence of prior knowledge and experience on willingness to pay for home hospice services. A nationwide cross-sectional contingent valuation study was conducted in Austria. ... The two-part regression analysis showed a statistically significant positive impact on the probability of having a positive willingness to pay by prior knowledge of home hospice services, prior donations, and the wish of not dying alone. [Continue reading ...]Editor's note: Pair this research from Austria with today's USA post, "Medicare and 24-hour in-home hospice care: Is it covered?" Too often, we take for granted our Hospice Medicare payment system. Some choose to misuse it in ways that lead to fraud. This research reinforces openess to hospice services per "prior knowledge of home hospice services, prior donations, and the wish of not dying alone."

Community health workers and technology interventions' impact on palliative support globally Journal of Palliative Medicine; by Alekhya Gunturi, Margarita Pertierra, Irma Elizabeth Huayanay Espinoza, Maya Kavita Ramachandran, Mpho Ratshikana Moloko, Karl A Lorenz; 3/20/25Background: Palliative care has the potential to relieve burdened global health systems but is in short supply in many low-resource settings. Community health workers (CHWs) and digital health tools/telephonic support have the potential to scale scarce palliative care resources and improve outcomes for seriously ill adults in home/community settings.  Conclusions: CHWs and digital health/telephony can improve quality of life, health care use, and caregiver support. Most research focuses on physical and psychological aspects of care instead of cultural aspects of care. Future research is needed to explore culturally tailored interventions in minority populations and low- and middle-income countries, as well as investigate emerging remote technologies to allow for scaling palliative care into home/community settings.Editor's note: Pair this with Hospice community responds to proposed DEA telehealth prescribing rule, posted 3/21/25.

[UK] Why we need to consider frailty in the assisted dying debateAge and Aging; Sarah A Hopkins, Annabel Price, Simon N Etkind; 2/25Assisted dying/assisted suicide (AD/AS) is legal or decriminalised in several countries and Bills to legalise it are currently being considered by the UK and Scottish Parliaments. Older adults living with frailty make up an increasing proportion of those who die, yet the possible implications of AD/AS for these individuals are relatively unexplored. Frailty complicates AD/AS in relation to eligibility because of ambiguity over whether frailty constitutes a terminal illness, challenges in accurately predicting prognosis, and difficulty determining reversibility of suffering. Frailty also blurs the distinction between terminal illness and disability, in contrast to the clear-cut language of current proposed legislation where those with a terminal illness are eligible, but those with disability are not. Further consideration is needed regarding eligibility, safeguards in the context of relational autonomy and for those who already feel a burden, and how to mitigate risks of further entrenching ableist and ageist attitudes.