Literature Review

Top story this week last year - 5/5/24Measuring decision aid effectiveness for end-of-life care: A systematic reviewPEC Innovation; M. Courtney Hughes, Erin Vernon, Chinenye Egwuonwu, Oluwatoyosi Afolabi; 4/24A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards.Publisher's note: Also by these co-authors, please see The effectiveness of community-based palliative care program components: A systematic review (Age and Ageing, 2023) and Measuring effectiveness in community-based palliative care programs: A systematic review (Social Science & Medicine, 2022).

Sunday newsletters focus on headlines and top read stories of the last week (in order) - enjoy!

Preferences for communication about prognosis among children with cancer, parents, and oncologistsJAMA Network Open; Caroline Christianson, MD; Calliope Reeves; Harmony Farner, MA; Shoshana Mehler, BA; Tara M. Brinkman, PhD; Justin N. Baker, MD; Pamela Hinds, PhD, RN; Jennifer W. Mack, MD, MPH; Erica C. Kaye, MD, MPH; 4/25Should oncologists elicit communication preferences from patients with pediatric cancer and their parents before disclosing prognosis? In this study, patients, parents, and oncologists recommended preemptive elicitation of communication preferences with the goal of improving alignment of prognostic disclosure with patient and caregiver communication needs, thereby enhancing quality of care. These findings demonstrate that patients and caregivers are open to discussing prognostic communication preferences, and that oncologists also recognize the potential value in this communication approach, even as they rarely engage in it. 

Quality measure considerations for pediatric palliative and end-of-life careAmerican Journal of Hospice and Palliative Medicine; Hannah Hommes, MSN, RN; Diane Forsyth, PhD, RN; April Rowe Neal, PhD, RN; 3/25 There is an emerging need to provide high-quality pediatric palliative care and end-of-life care to children, adolescents, and young adults with life-limiting illnesses. The aim of this literature review was to explore current quality measures utilized in pediatric palliative care and end-of-life care among pediatric patients with life-limiting illnesses within the conceptual framework of Comfort Theory. Emergent themes among quality measures were categorized into 7 domains: (a) Alleviation of distressing symptoms, (b) Structures and processes of care, (c) Health care utilization, (d) Location of death and bereavement care, (e) Patient and family experiences, (f) Psychological and spiritual care, and (g) Cultural, ethical, and legal considerations. These domains support the physical, psychospiritual, sociocultural, and environmental contexts of Comfort Theory. Quality measure research, development, and standardization should focus within the 7 domains identified for the promotion of comfort, equity, and accessible care.

Designing and developing interprofessional learning experiences in palliative care: A collaborative workshop approachPalliative Medicine Reports; Carolyn Kezar, Justine McGiboney, Michael D. Barnett, Richard Taylor, Rebecca Edwards, Ella H. Bowman, Elizabeth McAlister, Moneka A. Thompson, Tara Schapmire, Chao-Hui Sylvia Huang; 4/25Team-based care is vital in palliative care, but there is limited interprofessional education (IPE) among health care providers, leading to siloed learning. We aimed to design, implement, and evaluate an Interprofessional Education Exchange (IPEX) Death and Dying workshop to foster interdisciplinary collaboration and improve participants’ comfort with palliative care competencies. The primary findings of our study support our initial goal of creating an effective and engaging learning experience, as demonstrated by the significant increase in comfort levels across all interprofessional competency domains. The use of a case-based, interdisciplinary approach to PC [palliative care] education was particularly impactful, with improvements of up to 50% in some areas. Notably, 96% of learners agreed that working with peers from other disciplines enhanced their education, suggesting that early collaboration can improve communication and team-based care in clinical practice.

Private equity’s impact on medical traineesHealth Affairs; by Alexander P. Philips, Viknesh Kasthuri, Russell Hawes, Hunter Kramer, Barbara Chiu, Pragi Patel, Hannah Harrelson; 4/14/25Over the past decade, private equity (PE) ownership of physician practices and health care delivery systems in the United States has increased substantially. It is widely acknowledged that the trend toward short-term, profit-driven ownership challenges physician autonomy and raises ethical questions for physicians and patients. However, current discussions must more adequately recognize the effect of these trends on medical trainees. As medical students, we provide a perspective as future stakeholders amid a rapidly evolving landscape. In this Forefront article, we review PE’s involvement in health care, its impact on physicians and patients, the persistent professional and ethical challenges that directly affect medical trainees of all levels, and advocate for policy changes to protect trainees and address the underlying incentives that cause physicians to sell to PE.

[Sweden] A human right to assisted dying? Autonomy, dignity, and exceptions to the right to lifeNursing Ethics; Jon Wittrock; 4/25 Debates on assisted dying remain controversial and call out for conceptual clarification. What is the moral basis for assessing competing arguments, and what is the best way to frame these arguments in terms of actual and potential human rights? This article aims to investigate whether autonomy alone suffices as a moral source for human rights and whether, on this basis, there should be a positive human right to assisted dying, and a negative human right to assist others in dying. Drawing upon discussions in political theory, medical ethics, and human rights scholarship, the article develops an account of autonomy as multidimensional and subject to trade-offs.

[Taiwan] Palliative care with negative pressure wound therapy application in malignant wounds: a systematic reviewJournal of Wound Care; Xiao-Feng Yao, Yen-Jen Wang, Yang-Sheng Lin; 4/25Of 765 articles screened, 14 eligible studies were included in the review. The location of the hard-to-heal wounds was widely distributed: five wounds on the scalp; three wounds over the anogenital area; and the remaining wounds on the trunk and extremities. The reported outcomes included: improvement of wound healing; decreased exudation and malodour of the wound; decreased pain sensation; eligibility for further treatment; and a shift to the homecare system. The findings of this study suggested NPWT [negative pressure wound therapy] could be a choice in palliative care for patients with malignant wounds. However, more studies are needed to evaluate the efficacy of NPWT in these wounds.

Research study participation: NIH MAiD study recruitmentPersonal communication; by Stacy Fischer, Dan Matlock; 4/22/25We are Dr. Stacy Fischer and Dr. Dan Matlock, physicians at the University of Colorado Anschutz Medical Campus and co-principal investigators on a National Institutes of Health-funded study to understand the experiences of patients seriously considering medical aid in dying and their caregivers. Our multidisciplinary team includes geriatricians, bioethicists, and both quantitative and qualitative experts... Our goal is to recruit 300 patients and caregivers nationwide, and we would deeply appreciate your continued support in helping us connect with individuals who are seriously considering MAiD and their caregivers (e.g., those who have scheduled or completed their first MAiD consultation).

Courts diverge in challenges to CMS's minimum staffing requirements for LTC facilities JD Supra; by Kayla Stachniak Kaplan, Scott Memmott, Sydney Menack, Jonathan York, Howard Young; 4/30/25On May 10, 2024, the Centers for Medicare and Medicaid Services (CMS) published its Final Rule to implement minimum staffing standards for long-term care (LTC) facilities in the United States. However, as discussed in our prior blog post, the Final Rule was immediately challenged under the Administrative Procedure Act (APA) in two major lawsuits. These cases have resulted in divergent rulings, injecting more uncertainty across the LTC industry about the future of the application and validity of the Final Rule. ... This and further developments in these cases will have significant impact on the future of CMS’s oversight of the country’s nursing homes.

Administration to close HHS Civil Rights office Newsmax; by Brian Freeman; 4/28/25 As part of massive cutbacks at the Department of Health and Human Services, the Centers for Medicare & Medicaid Services will shut down their civil rights office in June, according to an email sent to staff on Monday and viewed by Politico. HHS has already been reduced by some 20% as part of overall downsizing, with Secretary Robert F. Kennedy Jr. and President Donald Trump focusing on eliminating those programs and agencies they say promote diversity, equity, and inclusion. ... Complaints that are nearing completion connected to workplace harassment and discrimination will be closed out in the coming weeks, and remaining complaints will be "transferred to an appropriate entity," the email stated.Editor's note: Data from the 2024 NHPCO Facts and Figures Report states: "In CY 2022, 51.6% of White Medicare decedents used the Medicare Hospice Benefit. 38.1% of Asian American Medicare decedents and 37.4% of Black Medicare decedents enrolled in hospice. 38.3% of Hispanic and 37.1% of North American Native Medicare decedents used hospice in 2022." The discrepancies between white and non-white decedents demonstrate double-digit differences. Extensive evidence-based research validates wide gaps in hospice/healthcare for persons whom the HHS Civil Rights office is charged with protecting. For more, visit Office of Civi Rights Home | HHS.gov and Office of Civil Rights About Us. 

Assembly passes bill to allow medically assisted death for terminally ill New Yorkers NNY360, Watertown Daily Times and Northern New York Newspapers, Watertown, NY; by Alex Gault; 4/2925 The New York state legislature is poised to pass a bill that would allow terminally ill people to seek a medication to end their lives, a process called medical aid in dying. On Tuesday, the Assembly voted for the first time to advance a bill, carried by Assemblywoman Amy Paulin, D-Westchester, that would allow a terminally ill patient to ask for a prescription for a lethal medication, to be taken at home on their own terms.