Literature Review

Racial disparities in palliative care at end-of-life in children with advanced heart disease in the SouthJournal of Pediatrics; by Harrison Turner, Elizabeth S Davis, Isaac Martinez, Shambihavi Anshumani, Santiago Boresino, Susan Buckingham, Caroline Caudill, Chen Dai, Erika Mendoza, Katie M Moynihan, Lucas A Puttock, Raba Tefera, Smita Bhatia, Emily E Johnston; 8/24We performed a retrospective study from electronic health records of children (≤21 years at death) who died with advanced heart disease at a single institution between 2012 and 2019 (n=128). The main outcome was specialty pediatric palliative care (SPPC) consult; we assessed clinical and sociodemographic factors associated with SPPC. The median age at death was 6 months (IQR=1-25 months) with 80 (63%) ≤1 year... Twenty-nine children (22%) received SPPC. Children ≤1 year at time of death and Black children were less likely to receive SPPC. SPPC was associated with death while receiving comfort-focused care, do not resuscitate orders, and hospice enrollment (no children without SPPC care were enrolled in hospice) but not medically intense EOL care (ICU admission, mechanical ventilation, hemodialysis, or CPR) or death outside the ICU. Children dying with advanced heart disease in Alabama did not have routine SPPC involvement; infants and Black children had lower odds of SPPC. SPPC was associated with more comfort-focused care.

Research involving the recently deceased: ethics questions that must be answeredJournal of Medical Ethics; by Brendan Parent, Olivia S Kates, Wadih Arap, Arthur Caplan, Brian Childs, Neal W Dickert, Mary Homan, Kathy Kinlaw, Ayannah Lang, Stephen Latham, Macey L Levan, Robert D Truog, Adam Webb, Paul Root Wolpe, Rebecca D Pentz; 8/24Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria-or 'research involving the recently deceased'-can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor's legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of tissue donation and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically.

"Life… Gets Turned Upside-Down…" Opportunities to improve palliative care for high-grade gliomaJournal of Pain and Symptom Management; by Rita C Crooms, Jeannys F Nnemnbeng, Jennie W Taylor, Nathan E Goldstein, Barbara G Vickrey, Ksenia Gorbenko; 9/24Early palliative care referral is recommended broadly in oncology. Yet, few patients with high-grade gliomas (HGG) - highly aggressive brain tumors - receive specialty palliative care consultation. The palliative care needs of HGG relative to other cancers across palliative care domains are distinguished by poor prognosis, physical and cognitive deficits, and neuropsychiatric symptoms. Themes on indications for palliative care referral differed between neuro-oncologists and palliative physicians. Neuro-oncologists favored selective referral for clinical indications such as high non-neurologic symptom burden requiring time-intensive management. Palliative physicians favored early referral of most HGG patients, to allow for maximal benefit across HGG trajectory.

Vaccine mandates for health care workers—An effective policy tool for past and future pandemics JAMA Open Network; John B. Lynch, MD, MPH; 8/24COVID-19 vaccines reduce the risk of infection, severe disease, long COVID, and death. Although COVID-19 vaccines were free and obtainable in 2021 and as early as December 2020 for some health care workers (HCWs), a considerable proportion of people in the US chose not to get vaccinated. Wang and colleagues investigated this challenging and critically important question: do public policies that required health care workers to get vaccinated increase vaccine uptake? ... by the second week after a mandate was implemented, Wang et al found an increase in the proportion of HCWs ever vaccinated or who had completed or intended to complete the primary vaccination series. These results join those of other studies that found an association between vaccine mandates and increased vaccinations in specific populations. Studies like that by Wang et al provide more information that could be used to design mandates and communicate the impact of future mandates, providing much needed and better measures of the perceived tradeoffs of governmental action in preparation for the next pandemic and in the prevention of nonpandemic infectious diseases.

Lay-led intervention for war and refugee trauma-A randomized clinical trialJAMA Network Open; Lori A. Zoellner, PhD; Jacob A. Bentley, PhD; Kawther Musa, MA; Farhiya Mohamed, MSW; Luul B. Ahmed, BA; Kevin M. King, PhD; Norah C. Feeny, PhD; for the Islamic Trauma Healing Clinical Team; 8/24The global refugee crisis disproportionately affects the Muslim world [and] forced displacement often results in trauma-related mental health issues. Effective psychotherapy exists, but there are barriers to uptake by refugee groups as well as a lack of culturally appropriate interventions. In a randomized clinical trial with a US-based sample of 101 refugees, Islamic Trauma Healing showed significant effects on posttraumatic stress disorder, depression, and well-being, compared with the control group, with gains maintained through 12-week follow-up. Islamic Trauma Healing was well received by community members, consistent with faith and culture. The findings of this study suggest that this deep-cultural–adapted intervention has the potential to provide an easily trainable and scalable model to reach war and refugee communities unlikely to either have access to or seek Western-based mental health interventions.

Individual-and community-level risk factors of cancer-related financial hardship among cancer survivorsJAMA Network Open; Apoorv Dhir, MD; Kristian Donald Stensland, MD, MS, MPH; Lindsey Allison Herrel, MD, MS; Rishi Robert Sekar, MD, MS; 8/24Cancer survivors face substantial economic hardships during and after oncologic care, compounding the physical and psychosocial implications of a cancer diagnosis and compromising treatment adherence, quality of life, and survival. In this cross-sectional study, approximately 50% of cancer survivors experienced cancer-related financial hardship, with a disproportionate number of survivors who were younger, were Medicare or Medicaid beneficiaries, were socioeconomically disadvantaged, and had advanced disease. Although policy efforts to curb the costs of cancer care are essential, acknowledging the role of community and structural barriers and identifying socially vulnerable populations for targeted interventions represent a potential strategy toward mitigating financial hardship and delivering equitable cancer care.

Injurious fall risk differences among older adults with first-line depression treatmentsJAMA Network Open; Grace Hsin-Min Wang, PharmD, MS; Edward Chia-Cheng Lai, PhD; Amie J. Goodin, PhD; Rachel C. Reise, PharmD, MS; Ronald I. Shorr, MD, MS; Wei-Hsuan Lo-Ciganic, PhD, MS, MSPharm; 8/24One-third of older adults in the US have depression, often treated with psychotherapy and antidepressants. In this cohort study of older Medicare beneficiaries with depression, first-line antidepressants were associated with a decreased FRI risk compared with untreated individuals. These findings provide valuable insights into their safety profiles, aiding clinicians in their consideration for treating depression in older adults.

Rita and Alex Hillman Foundation announces $500,000 in funding for nine projects to improve serious illness and end of life care Globe Newswire; by Rita & Alex Hillman Foundation; 9/10/24 The Rita and Alex Hillman Foundation ... announced nine grants to support innovative, early-stage interventions that address the serious illness and end of life needs of marginalized populations. The $500,000 in funding, part of a collaborative effort with The Arthur Vining Davis Foundations, will advance nursing-driven initiatives that improve care for diverse populations and expand access to high-quality end of life services. ... This year’s grants demonstrate a commitment to the design, development, and delivery of better and more equitable care. The 2024 HSEI grant recipients are:

Incorporating patient values in large language model recommendations for surrogate and proxy decisionsCritical Care Explorations; Victoria J Nolan, Jeremy A Balch, Naveen P Baskaran, Benjamin Shickel, Philip A Efron, Gilbert R Upchurch Jr, Azra Bihorac, Christopher J Tignanelli, Ray E Moseley, Tyler J Loftus; 8/24Surrogates, proxies, and clinicians making shared treatment decisions for patients who have lost decision-making capacity often fail to honor patients' wishes, due to stress, time pressures, misunderstanding patient values, and projecting personal biases. Advance directives intend to align care with patient values but are limited by low completion rates and application to only a subset of medical decisions. [Likert] scores were highest when patient values were captured as short, unstructured, and free-text narratives based on simulated patient profiles. This proof-of-concept study demonstrates the potential for LLMs [large language models] to function as support tools for surrogates, proxies, and clinicians aiming to honor the wishes and values of decisionally incapacitated patients.

Palliative care for dialysis-dependent pediatric patients: A survey of providers, nurses, and caregiversKidney360; Joshua Lipsitz, Mark Stockton Beveridge, Katherine Maddox; 8/24Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but remain underutilized within pediatric nephrology. 90% of providers and all nurses desired more palliative care education. Of the 22% of caregivers whose child had already received palliative care services, all found the consultation to be helpful. These data support further palliative care education for pediatric nephrology providers and nurses and more robust and systematic involvement of subspecialty palliative care for dialysis-dependent pediatric patients.

Psilocybin-assisted psychotherapy for existential distress: practical considerations for therapeutic application-a reviewAnnals of Palliative Medicine; Arum Kim, Barley Halton, Akash Shah, Olivia M Seecof, Stephen Ross; 8/24Existential distress is commonly experienced by patients diagnosed with a life-threatening illness. This condition has been shown to adversely impact quality of life and is correlated with increased suicidal ideation and requests for hastened death. While palliative care teams are experienced in treating depression and anxiety, existential distress is a distinct clinical condition for which traditional medications and psychotherapy approaches demonstrate limited efficacy or duration of effect. Psychedelic drugs, including psilocybin and lysergic acid diethylamide (LSD), in conjunction with psychotherapy have been shown to produce rapid and sustained reductions in existential and psychiatric distress and may be a promising treatment for patients facing existential distress in palliative care settings.

Creating a palliative care clinic for patients with cancer pain and substance use disorderJournal of Pain and Symptom Management; Sachin S Kale, Gennaro Di Tosto, Laura J Rush, Justin Kullgren, Deborah Russell, Martin Fried, Blessing Igboeli, Julie Teater, Katie Fitzgerald Jones, Devon K Check, Jessica Merlin, Ann Scheck McAlearney; 8/24Opioids are a first-line treatment for severe cancer pain. However, clinicians may be reluctant to prescribe opioids for patients with concurrent substance use disorders (SUD) or clinical concerns about non-prescribed substance use. We created the Palliative Harm Reduction and Resiliency Clinic, a palliative care clinic founded on harm reduction principles and including formal collaboration with addiction psychiatry. The formal collaboration with addiction psychiatry and the integration of harm reduction principles and practices into ambulatory palliative care improved our ability to provide treatment to a previously underserved patient population with high symptom burden.

Respect for the patient-oncologist relationship may limit serious illness communication by acute and postacute care clinicians after discharge to a skilled nursing facilityJCO Oncology Practice; by Sarguni Singh, Ashley Dafoe, John Cagle, Elizabeth R. Kessler, Hillary D. Lum, Brooke Dorsey Holliman, Stacy Fischer; 6/24There is a need to increase palliative care access for hospitalized older adults with cancer discharged to a skilled nursing facility (SNF) at risk of poor outcomes. Assessing and Listening to Individual Goals and Needs (ALIGN) is a palliative care intervention developed to address this gap. This study gathered perspectives from clinicians across care settings to describe perceptions on serious illness communication and care coordination for patients with cancer after discharge to a SNF to guide ALIGN refinements... These findings suggest that acute and postacute care clinicians defer serious illness conversations to the oncologist when patients are on a steep trajectory of decline, experiencing multiple care transitions, and may have limited contact with their oncologist. There is a need to clarify roles among nononcology and oncology clinicians in discussing prognosis and recommending hospice for older adults discharged to SNF.