Literature Review

Provider perspectives on implementation of adult community-based palliative care: A scoping reviewMedical Care Research and Review; Nicole Dussault, Dorian Ho, Haripriya Dukkipati, Judith B. Vick, Lesley A. Skalla, Jessica Ma, Christopher A. Jones, Brystana G. Kaufman; 1/25While community-based palliative care (CBPC) programs have been expanding, there remain important obstacles to widespread use. Since provider perspectives on CBPC remain underexplored, we conducted a scoping review to summarize provider perspectives regarding barriers and facilitators to implementation of adult CBPC in the United States. At the provider level, barriers included misperceptions of palliative care (PC) by referring providers and poor communication, while facilitators included multidisciplinary teams and referring provider education. At the organizational level, time constraints were barriers, while leadership buy-in and co-located clinics were facilitators. At the external environment level, limited PC workforce and inadequate reimbursement were barriers. Our findings suggest that efforts aimed at scaling CBPC must address factors at the provider, organizational, and policy levels.

Head and neck cancer mortality in the Appalachian regionJAMA Otolaryngology-Head and Neck Surgery; Todd Burus, MAS; Pamela C. Hull, PhD; Krystle A. Lang Kuhs, PhD, MPH; 12/24In contrast to non-Appalachian US, where HNC [head and neck cancer] mortality rates declined considerably between 1999 and 2020, HNC mortality rates in the Appalachian region have remained stubbornly stable. Moreover, statistically significant increasing rates of HNC mortality in rural Appalachia provide evidence that the lack of rural HNC mortality improvements nationwide are associated with Appalachian disparities. While the exact factors driving these trends are unknown, the Appalachian region has an increased prevalence of multiple risk factors associated with cancer mortality, such as adverse social determinants of health, heightened alcohol and tobacco use, later stage at diagnosis, and limited access to care. Investments in the Appalachian region—such as through the Bipartisan Infrastructure Law or by expanding coverage of the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program among Appalachian states—could help reduce the burden of HNC mortality by improving cancer surveillance and serving the unique needs and experiences of the Appalachian population. These investments could also aid efforts to improve other cancer sites with known disparities in Appalachia, such as lung and colorectal cancers.

Current challenges in neurocritical care: A narrative reviewWorld Neurosurgery; Safa Kaleem, William T. Harris II, Stephanie Oh, Judy H. Ch'ang; 1/25Neurocritical care as a field aims to treat patients who are neurologically critically ill due to a variety of pathologies. As a recently developed subspecialty, the field faces challenges, several of which are outlined in this review ... [including confusion around] brain death testing or the diagnosis of brain death itself ... Given these difficult scenarios encountered in the neuro-ICU, conversations with patients’ decision-makers are often done with the assistance of palliative care services ... the most common reasons for palliative care consultation in the neuro-ICU were discussing prognosis, eliciting patient and family values, understanding medical options, and identifying conflict. Collaboration with hospital chaplains and palliative care services can be helpful, but cultural humility also needs to be a priority for neurocritical care providers to be able to navigate difficult conversations.

Conscience at the end of lifeNursing Reports; Ralph Neil Baergen, James Skidmore; 12/24Caring for patients at the end of life can involve issues that are ethically and legally fraught: withholding or withdrawing artificial nutrition and hydration, pain control that could hasten death, aggressive treatment that is continued when it seems only to be prolonging suffering, patients who request medical assistance in dying, and so forth. Clinicians may find that their deeply held ethical principles conflict with law, institutional policy, or patients' choices. In these situations, they may consider either refusing to participate in procedures that they find morally abhorrent (conscientious refusal) or providing care that they believe to be ethically obligatory despite being contrary to law or policy (conscientious commitment). Healthcare providers who refuse to provide medical services should be expected to explain their reasons, make prompt referrals, and bear some of the resulting costs or burdens.

Caregiver reported experiences of not-for-profit hospice agencies with a religious affiliationJournal of the American Geriatrics Society; by Xiao (Joyce) Wang, Joan M. Teno, Momotazur Rahman, Emmanuelle Belanger; 12/24Compared to those without a religious affiliation, the religiously affiliated hospices were smaller in size, newer, had a higher shares of patients with dementia, and also a higher percentage of patients living in nursing homes, and were more likely to be in the Midwest. These hospices also had lower scores across all CAHPS measures, with the magnitude of these differences by religious affiliation being small to medium. Compared to hospices without a religious affiliation, a much lower proportion of hospices with a religious affiliation received four or five stars (66.5% vs. 47.6%).Publisher's note: While for-profit hospices have been grouped into various categories (e.g., private equity owned or publicly traded companies), this is the first article I recall grouping nonprofit hospices into various categories.

Recommendations to ensure safety of AI in real-world clinical careJAMA; Dean F. Sittig, PhD; Hardeep Singh, MD, MPH; 11/24As HCOs [health care organizations] adapt their clinical and administrative workflows to new AI [artificial intelligence]-driven technologies, unintended adverse consequences will inevitably occur, particularly during transitions. To address these risks, HCOs and AI/EHR [electronic health record] developers must collaborate to ensure that AI systems are robust, reliable, and transparent. HCOs must proactively develop AI safety assurance programs that leverage shared responsibility principles, implement a multifaceted approach to address AI implementation, monitor AI use, and engage clinicians and patients. Monitoring risks is crucial to maintaining system integrity, prioritizing patient safety, and ensuring data security. 

Evolution in documented goals of care at end of life for adolescents and younger adults with cancerJAMA Network Open; Rosemarie Mastropolo, Colin Cernik, Hajime Uno, Lauren Fisher, Lanfang Xu, Cecile A Laurent, Nancy Cannizzaro, Julie Munneke, Robert M Cooper, Joshua R Lakin, Corey M Schwartz, Mallory Casperson, Andrea Altschuler, Lawrence Kushi, Chun R Chao, Lori Wiener, Jennifer W Mack; 12/24Little is known about the nature of change in goals of care (GOC) over time among adolescents and younger adult (AYA) patients aged 12 to 39 years with cancer near the end of life. Understanding how GOC evolve may guide clinicians in supporting AYA patients in making end-of-life decisions. In this cross-sectional study of AYA patients who died of cancer, palliative goals were rarely documented before the last month of life, highlighting the need for timely and ongoing GOC discussions.

Behavioral symptoms and treatment challenges for patients living with dementia: Hospice clinician and caregiver perspectivesJournal of the American Geriatrics Society; Karolina Sadowska BA; Molly Turnwald BA; Thomas O'Neil MD; Donovan T. Maust MD, MS; Lauren B. Gerlach DO, MS; 12/24Dementia affects one in three older adults over age 85 and individuals with dementia constitute the fastest growing population of patients entering hospice care. While cognitive impairment is the hallmark of dementia, behavioral symptoms are reported in nearly all patients with advanced dementia, contributing to both the complexity of end-of-life care and caregiver burden. Behavioral symptoms of dementia are highly prevalent among the US hospice population and are often managed with psychotropic medications prescribed off-label. There are limited treatment guidelines in this population, so the appropriate risk and benefit balance may be highly individual. This qualitative study can help to inform the decision-making of hospice clinicians and caregivers regarding anticipated behavioral changes and limitations of treatment options in dementia end-of-life care. 

Estimation of cancer deaths averted from prevention, screening, and treatment efforts, 1975-2020JAMA Oncology; Katrina A. B. Goddard, PhD; Eric J. Feuer, PhD; Jeanne S. Mandelblatt, MD, MPH; Rafael Meza, PhD; Theodore R. Holford, PhD; Jihyoun Jeon, PhD; Iris Lansdorp-Vogelaar, PhD; Roman Gulati, MS; Natasha K. Stout, PhD; Nadia Howlader, PhD; Amy B. Knudsen, PhD; Daniel Miller, BA; Jennifer L. Caswell-Jin, MD; Clyde B. Schechter, MD; Ruth Etzioni, PhD; Amy Trentham-Dietz, PhD; Allison W. Kurian, MD, MSc; Sylvia K. Plevritis, PhD; John M. Hampton, MS; Sarah Stein, PhD; Liyang P. Sun, MS; Asad Umar, DVM, PhD; Philip E. Castle, PhD; 12/24Overall US mortality has declined over time for most major cancer sites because of progress in prevention, screening, and treatment. Nevertheless, the reignited Cancer Moonshot goal to reduce the age-adjusted cancer mortality rate by 50% in the next 25 years will not be achieved without accelerating progress. In this model-based study using population-level cancer mortality data, an estimated 5.94 million deaths were averted from these 5 cancers [breast, cervical, colorectal, lung, and prostate] combined. Prevention and screening accounted for 8 of every 10 averted deaths, and the contribution varied by cancer site. A comprehensive plan to reduce cancer mortality includes interventions in cancer prevention, detection, diagnosis, treatment, and survivorship care.

Cannabidiol for scan-related anxiety in women with advanced breast cancer-A randomized clinical trialJAMA Network Open; Manan M. Nayak, PhD, MA; Peter Chai, MD; Paul J. Catalano, ScD; William F. Pirl, MD, MPH; James A. Tulsky, MD; Stephanie C. Tung, MD; Nancy U. Lin, MD; Nicole Andrade, BA; Sabrina Johns, MPH; Clint Vaz, MD; Melissa Hughes, MSc; Ilana M. Braun, MD; 12/24The findings of this randomized clinical trial show that CBD [cannabidiol] can be used safely in women with advanced breast cancer and clinical anxiety. Although the study did not meet its primary end point comparing preingestion vs postingestion anxiety change scores between study arms, anxiety levels in the CBD arm were significantly lower 2 to 4 hours after ingestion, suggesting a possible anxiolytic effect and warranting further investigation. 

Stakeholder perspectives on randomized clinical trials for children with poor-prognosis cancersJAMA Network Open; Nicholas Bird, MSc; Nicole Scobie; Pablo Berlanga, MD; Patricia Blanc, MBA; Vickie Buenger, PhD; Quentin Campbell-Hewson, MBChB; Michela Casanova, MD; Steven DuBois, MD; Julia Glade Bender, MD; Ann Graham; Delphine Heenen, LLM; Christina Ip-Toma, BSc; Donna Ludwinski, BSChem; Lucas Moreno, MD; Donna Neuberg, ScD; Antonia Palmer, MASc; Xavier Paoletti, PhD; Willemijn Plieger-van Solkema, LLM; Gregory Reaman, MD; Teresa de Rojas, MD; Claudia Rossig, MD; Anja Schiel, PhD; Sara Wakeling, BA; Gilles Vassal, MD; Andrew Pearson, MD; Leona Knox, BSc; 12/24In poor-prognosis children’s cancers, new therapies may carry fresh hope for patients and parents. However, there is an absolute requirement for any new therapy to be properly evaluated to fulfill scientific, regulatory, and reimbursement requirements. Randomized clinical trials (RCTs) are considered the gold standard, but no consensus exists on how and when they should be deployed to best meet the needs of all stakeholders. The agreed-upon workshop conclusions provide a basis for key considerations while undertaking future drug development activities for children with poor-prognosis cancers, ensuring that the needs and perspectives of all stakeholders are factored in from the outset.

Loneliness and social and emotional support among sexual and gender minority caregiversJAMA Network Open; Zhigang Xie, PhD; Hanadi Hamadi, PhD; Kassie Terrell, PhD; Laggy George, MPH; Jennifer Wells, BA; Jiaming Liang, PhD; 12/24In the current landscape of US health care, informal unpaid caregiving provided by family members and friends is indispensable for managing diseases and ensuring long-term care in residential settings. Sexual and gender minority (SGM) adults in the US are more likely than their non-SGM counterparts to provide informal care to their family members and/or friends. Caregiving can impose substantial physical, mental, and social connection issues on caregivers.Conclusions and Relevance In this cross-sectional study of social connections, SGM adults experienced significantly higher levels of loneliness compared with straight adults, irrespective of caregiving status.