Literature Review

Hidden From sight - From the closet to the paywall: A rapid evaluation of restricted and monetized access to LGBTQ+ inclusive palliative, end-of-life, and bereavement care researchJournal of Pain and Symptom Management; by William E Rosa, Donna Wakefield, Hannah M Scott, Debbie Braybrook, Richard Harding, Katherine Bristowe; 9/24Health and social care professionals and policy makers rely on access to high quality evidence to inform their work. Failing to make articles related to the needs of LGBTQ+ people and populations OA risks further marginalisation and worsened inequities. Innovative journal policies and funding are needed to enable access, particularly for research that foregrounds the needs of marginalised communities. Where articles are currently behind paywalls, there is a need for accessible summaries or policy briefs to inform inclusive policy and practice.

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.

[Canada] Cognitive symptoms across diverse cancersJAMA Network Open; Samantha J. Mayo, RN, PhD; Kim Edelstein, PhD; Eshetu G. Atenafu, MSc, PStat; Rand Ajaj, HBSc; Madeline Li, MD, PhD; Lori J. Bernstein, PhD; 8/24In this cross-sectional study of 5078 survey respondents with cancer seeking psychosocial support, over half of these patients reported having cognitive symptoms of any severity. A third of these patients reported moderate to severe cognitive symptoms, which were associated with disease, treatment, and other symptoms. Findings of this study suggest that higher severity of cognitive symptoms was consistently associated with higher symptom burden; these findings could be used to inform decision-making regarding access to cognitive screening, assessment, and supportive care in outpatient oncology clinics.

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.

[Norway] Quality of life and relationships in caregivers of people with dementia. A gender perspectiveAmerican Journal of Alzheimer's Disease and Other Dementias; Heidi Bjørge, Kari Kvaal, Ingun Ulstein; Jan-Dec 2024Home-dwelling people with dementia rely on their family members to be able to stay at home. This affects the family caregivers' quality of life (QoL). Both male and female caregivers' depression influenced their QoL. For females, their own social distress influenced their QoL, and for males, their experience of their care receivers' overemotional attitude influenced their QoL. Significant gender-specific differences were found, indicating that gender must be considered when approving caregivers' needs and planning interventions for caregivers.

Accuracy of the “surprise question” in predicting long-term mortality among older patients admitted to the Emergency Department: Comparison between emergency physicians and nurses in a multicenter longitudinal studyPalliative Medicine Reports; by Alexandra Coulon, Delphine Bourmorck, Françoise Steenebruggen, Laurent Knoops, Isabelle De Brauwer, on behalf of the COPE Project; 8/24The “surprise question” (SQ) (“Would you be surprised if this patient died in the next 12 months?”) is the most frequently used screening tool in emergency departments (EDs) to identify patients with poor prognosis and potential unmet palliative needs... The SQ is a simple tool to identify older ED patients at high mortality risk. Concordant responses from [emergency physicians and nurses] are more predictive than either alone.

Changes in nursing home ownership may depress care and staffing, report findsMcKnight's Long-Term Care News; by John Roszkowski; 9/4/24Changes in nursing home ownership may have a small, but statistically significant, negative impact on staffing levels and the overall quality of patient care at nursing homes, according to new research. Investigators from the University of Pennsylvania and the Department of Veterans Affairs Medical Center in Philadelphia conducted a retrospective study of changes in nursing home ownership between 2016-2022 and how they impacted nursing home quality of care. Findings appeared in the Journal of the American Geriatrics Society. The researchers used data from the Centers for Medicare & Medicaid Services from 2016-2022 of nearly 3,600 nursing homes that changed ownership to determine if there were noticeable shifts in quality ratings after the properties changed hands.Publisher's note: This study might have interesting implications in the hospice field.

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.

"At least I can push this morphine": PICU nurses' approaches to suffering among dying childrenJournal of Pain and Symptom Management; Elizabeth G Broden, Ijeoma Julie Eche-Ugwu, Danielle D DeCourcey, Joanne Wolfe, Pamela S Hinds, Jennifer Snaman; 8/24Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying children's suffering. While physical suffering may be remedied with direct nursing care, holistically attending to EOL suffering in the PICU requires both bolstering external processes and strengthening PICU nurses' internal resources. Improving psychosocial training and optimizing interprofessional care systems could better support dying children and their families.