Literature Review

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.

Frailty in Medicare Advantage beneficiaries and Traditional Medicare beneficiariesJAMA Network Open; Sandra M. Shi, MD, MPH; Brianne Olivieri-Mui, PhD, MPH; Chan Mi Park, MD, MPH; Stephanie Sison, MD, MBA; Ellen P. McCarthy, PhD, MPH; Dae H. Kim, MD, ScD; 8/24In this nationally representative cohort study of 7063 community-dwelling individuals aged 65 years and older, compared with traditional fee-for-service Medicare beneficiaries, Medicare Advantage beneficiaries had higher levels of frailty at baseline but similar levels of frailty change over 1 year. These findings suggest that enrollment in Medicare Advantage plans is not associated with altered frailty trajectories compared with Traditional Medicare, and more work is needed to better understand the health services needs of older adults with frailty.

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. 

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.

Cancer research provides a model for advancing clinical trials in dementia in the era of disease-modifying Alzheimer's-type dementia therapiesAlzheimer's Research and Therapy; Gregory A Jicha, Thomas C Tucker, Susanne M Arnold, Peter T Nelson; 8/24Dementia and cancer are multifactorial, widely-feared, age-associated clinical syndromes that are increasing in prevalence. There have been major breakthroughs in clinical cancer research leading to some effective treatments, whereas the field of dementia has achieved comparatively limited success in clinical research. The lessons of cancer research may help those in the dementia research field in confronting some of the dilemmas faced when the clinical care regimen is not entirely safe or efficacious. There is also evidence from both cancer and dementia research that individuals enrolled in the placebo arms of clinical trials have unexpectedly good outcomes, indicating that participation in clinical trial can have medical benefits to enrollees.

Nursing Home Compare star ratings before versus after a change in nursing home ownershipJournal of the American Geriatrics Society; by Kira L Ryskina, Emily Tu, Junning Liang, Seiyoun Kim, Rachel M Werner; 7/24Nursing Home Compare ratings decreased slightly after a change in facility ownership, driven by lower staffing and health inspection ratings and mitigated somewhat by higher quality measure ratings. These conflicting trends underscore the need for transparency around changes in facility ownership and a better understanding of consequences of changes in ownership that are salient to patients and families.Publisher's note: This article might have interesting implications in the hospice field.

[Australia] Maybe for unbearable suffering: Diverse racial, ethnic and cultural perspectives of assisted dying. A scoping reviewPalliative Medicine; Melissa J Bloomer, Laurie Saffer, Jayne Hewitt, Lise Johns, Donna McAuliffe, Ann Bonner; 8/24Perspectives on assisted dying are dynamic and evolving. Even where assisted dying is legalised, individual's cultural attributes contribute to unique perspectives of assisted dying as an end-of-life option. Thus, understanding a person's culture, beliefs, expectations and choices in illness, treatment goals and care is fundamental, extending beyond what may be already considered as part of clinician-patient care relationships and routine advance care planning.

Site-of-Care shifts and payments—A viable strategy to control health care costs?JAMA Open Network; Lee A. Fleisher, MD, ML; Sheila P. Burke, RN, MPA; 8/24The authors sought to determine what proportion of care was currently being performed in hospital-based settings and investigated how much could be shifted to nonhospital settings today and 7 to 10 years in the future with technological advances. They found that the major barriers to site-of-care shifts were economic arrangements, ownership models, and perceived loss of continuity of care at alternative sites. These results affirm their view that to reduce health care spending and protect Medicare trust funds, it will be critical to develop financial incentives and, just as importantly, eliminate financial disincentives to drive care to the safest and lowest-cost site of service.

Reviewing ethical guidelines for the care of patients with Do-Not-Resuscitate orders after 30 years: rethinking our approach at a time of transition Anesthisiology; Matthew B. Allen, M.D.; Shahla Siddiqui, M.D., D.A.B.A., M.Sc.; Omonele Nwokolo, M.D.; Catherine M. Kuza, M.D.; Nicholas Sadovnikoff, M.D., H.E.C.-C.; David G. Mann, M.D., D.Be.; Michael J. Souter, M.B., Ch.B., D.A.; 9/24The American Society of Anesthesiologists (ASA) opposes automatic reversal of do-not-resuscitate orders during the perioperative period, instead advocating for a goal-directed approach that aligns decision-making with patients’ priorities and clinical circumstances. Implementation of ASA guidelines continues to face significant barriers including time constraints, lack of longitudinal relationships with patients, and difficulty translating goal-focused discussion into concrete clinical plans. These challenges mirror those of advance care planning more generally, suggesting a need for novel frameworks for serious illness communication and patient-centered decision-making.

Feasibility of a serious illness communication program for pediatric advance care planningJAMA Open Newtwork; Danielle D. DeCourcey, MD, MPH; Rachelle E. Bernacki, MD, MS; Brett Nava-Coulter, MPH; Sithya Lach, BS; Niya Xiong, MSPH; Joanne Wolfe, MD, MPH; 7/24Children and adolescents and young adults (AYAs) with serious illness often have a variable clinical course with periods of stability alternating with life-threatening deteriorations; consequently, many children and AYAs experience health crises without opportunities to discuss preferences for medical care. Furthermore, bereaved parents report a lack of preparation to address their child’s medical and emotional needs at end of life (EOL). Advance care planning (ACP) is an iterative process to honor patient and family goals and values involving communication about prognosis and the formulation of care plans addressing symptom management, quality of life, preferences for life-sustaining interventions, and anticipatory guidance about EOL. Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. This pilot cohort study found that the PediSICP [Pediatric Serious Illness Communication Program] was feasible, acceptable, and highly valued by clinicians and parents of children with serious illness.