Literature Review

Research brief: Medicare Advantage Special Needs Plans linked to use of inferior hospice carePenn LDI - Leonard Davis Institute of Health Economics; 3/11/25 Beneficiaries of Medicare Advantage special needs plans are significantly more likely to use lower-quality hospices than beneficiaries of other Medicare plans. These disparities may result from the geographic availability of high-quality hospices or the referrals that beneficiaries receive from their plans’ contracted hospitals and nursing homes. The results support incentivizing referrals to high-quality hospices and improving consumer information about hospice quality.

Tracking US health care spending by health condition and countyJAMA; Joseph L. Dieleman, PhD; Meera Beauchamp, BS; Sawyer W. Crosby, BA; Drew DeJarnatt, MS; Emily K. Johnson, MSc; Haley Lescinsky, MPH; Theresa McHugh, PhD; Ian Pollock, MLS; Maitreyi Sahu, MPH; Vivianne Swart, MPH; Kayla V. Taylor, MPH; Azalea Thomson, MPH; Golsum Tsakalos, MS; Maxwell Weil, MS; Lauren B. Wilner, MPH; Anthony L. Bui, MD, MPH; Herbert C. Duber, MD, MPH; Annie Haakenstad, ScD, MA; Bulat Idrisov, MD, MSc; Ali Mokdad, PhD; Mohsen Naghavi, MD, MPH, PhD; Gregory Roth, MD, MPH; John W. Scott, MD, MPH; Tara Templin, PhD, MS; Christopher J. L. Murray, DPhil, MD; 2/25Health care spending in the US totaled $3.8 trillion in 2019 and is projected to reach more than $7 trillion by 2031. Within the US, spending varies dramatically across states, although many key drivers of health care spending, such as access to care, service prices, disease and injury prevalence, and underlying need for health care, vary at more local levels. Broad variation in health care spending was observed across US counties. Understanding this variation by health condition, sex, age, type of care, and payer is valuable for identifying outliers, highlighting inequalities, and assessing health care gaps.

Knowledge of and preferences for medical aid in dyingJAMA Network Open; Elissa Kozlov, PhD; Elizabeth A. Luth, PhD; Sam Nemeth, BA; Todd D. Becker, PhD, LMSW; Paul R. Duberstein, PhD; 2/25In the US, approximately 74 million people (22%) live in a jurisdiction that allows medical aid in dying (MAID), a legal practice that allows terminally ill patients to obtain a prescription for medication to end their life. In this online survey study of 3,227 US adults, 51.3% did not know if MAID was legal in the US, and 50.8% did not know if MAID was legal in their state. In the full sample, 44.0% expressed interest in using MAID if terminally ill. This study suggests that there is substantial interest across all demographic groups in using MAID, but significant knowledge gaps exist about its legality, which may be associated with observed racial and ethnic and educational differences in MAID’s use. These findings highlight the need for public education, policy initiatives, and patient-clinician discussions to ensure equitable access to patient-centered end-of-life options and informed decision-making. 

Algorithm-based palliative care in patients with cancer-A cluster randomized clinical trialJAMA Network Open; Ravi B. Parikh, MD, MPP; William J. Ferrell, MPH; Yang Li, MS; Jinbo Chen, PhD; Larry Bilbrey; Nicole Johnson, BSN; Jenna White, MSW; Ramy Sedhom, MD; Natalie R. Dickson, MD; Stephen Schleicher, MD; Justin E. Bekelman, MD; Sandhya Mudumbi, MD; 2/25In this randomized clinical trial conducted in a community oncology network between November 2022 and December 2023 among 562 patients with advanced cancer identified by an automated electronic health record algorithm, default orders increased palliative care consultation (44% vs 8%) and decreased end-of-life systemic therapy (6% vs 16%) compared with usual care but did not improve patient-reported or hospice outcomes. The findings suggest that default algorithm-based palliative care orders are a scalable implementation strategy to increase palliative care referrals and reduce intensive end-of-life care. 

When is the best time to deliver supportive interventions to hospice family caregivers? A Multi-Method StudyGerontologist; by Oonjee Oh, Debra Parker Oliver, Karla Washington, George Demiris; 2/25While problem-solving interventions can teach caregivers effective coping skills throughout hospice, the optimal timing for introducing such resources remains unclear. We explored how the timing of a problem-solving intervention impacts its effectiveness for hospice caregivers. We conducted a multi-method study analyzing quantitative and qualitative data from a randomized clinical trial of a Problem-solving Intervention to Support Caregivers in End-of-life care Settings (PISCES)... Caregivers' anxiety showed significant pre-post differences regardless of the intervention timing, modality, and components... Three themes emerged from the qualitative analysis: timing for PISCES to be most effective, emotions during various stages of hospice, and the length of PISCES. Strategically integrating PISCES into hospice practice can help alleviate caregivers' distress.

Explaining racial and ethnic disparities in advance care planning: A decomposition analysisJournal of Pain and Symptom Management; Yifan Lou, Emma Zang, Qianqian Li; 2/25The ACP [advance care planning] disparities between White and Hispanic populations were nearly twice as large as the disparity between White and Black populations. Interventions targeting less educated older Black and Hispanic individuals should be prioritized to narrow the ACP disparity. Negative healthcare experiences in previous care and household dynamics should be addressed while working with Black and Hispanic older adults, respectively.

Shareholder payouts among large publicly traded health care companiesJAMA Internal Medicine; Victor Roy, MD, PhD; Victor Amana, MPH; Joseph S. Ross, MD, MHS; Cary P. Gross, MD; 2/25There is growing concern that a large proportion of US health care spending appears to be directed to corporate shareholders rather than enhancing affordable access, improving quality of care, or advancing research and development. Total shareholder payouts from S&P 500 health care companies have more than tripled in the past 20 years. Payouts were concentrated among a small number of companies, with the pharmaceutical, biotechnology, managed care, and health care equipment and supplies subindustries distributing the largest amounts. Given greater health care affordability challenges for US households and the major role of federal and state governments in financing the health care sector, shareholder payouts have critical implications for stakeholders, especially patients. Increasing capital distributions to shareholders of publicly traded companies may be associated with higher prices and may not be reinvested in improving access, delivery, or research and development.

Patients’ trust in health systems to use artificial intelligenceJAMA Network Open; Paige Nong, PhD; Jodyn Platt, PhD; 2/25This analysis found low trust in health care systems to use AI responsibly and protect patients from AI-related harms. General trust in the health care system, but not health literacy or AI knowledge, was associated with these perceptions. Low trust in health care systems to use AI indicates a need for improved communication and investments in organizational trustworthiness.

Associations between end-stage ALS care and specialty palliative care: A hypothesis-generating studyMuscle and Nerve; Christi M Lero, Annabelle Yang, Elyse Everett, Kyle A Pitzer, Kelly McCoy Gross, Karla T Washington; 2/25Amyotrophic lateral sclerosis (ALS) care is typically delivered via a multidisciplinary approach that may include specialty palliative care (SPC). Patients who received SPC (59%), had lower mean forced vital capacity ... , and more often used respiratory support ... , participated in goals of care conversations ... , reported a healthcare proxy ... , and enrolled in hospice ... than patients who received standard care alone. No differences between groups were found in duration of illness (mean = 51.7 months), use of assistive feeding, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) scores, ... documentation of a healthcare proxy, length of hospice stay (mean = 47.3 days), or location of death.

Development of an interprofessional clinician training in pediatric serious illness communicationJournal of Palliative Medicine; Danielle D DeCourcey, Rachelle Bernacki, John Carozza, Sithya Lach, Andrea Wershof Schwartz; 2/25Early advance care planning (ACP) is associated with improved outcomes in pediatrics, yet few rigorously developed curricula exist to train interprofessional clinicians in ACP communication. We developed an interactive, skills-based three-hour synchronous online clinician training program using Kern's Six-Step Curriculum Design, incorporating didactic and simulated patient encounters with a trained actor. Following training, 97% of participants were highly satisfied with training quality, and 100% endorsed that they would recommend it to colleagues. Additionally, clinician self-reported comfort discussing fundamental elements of ACP significantly increased following the training.

Informal caregivers connecting on the Web: Content analysis of posts on discussion forumsJMIR Formative Research; by Michelle L Foster, Chinenye Egwuonwu, Erin Vernon, Mohammad Alarifi, M Courtney HughesAbout 53 million adults in the United States offer informal care to family and friends with disease or disability. Such care has an estimated economic value of US $600 million. Most informal caregivers are not paid nor trained in caregiving, with many experiencing higher-than-average levels of stress and depression and lower levels of physical health. Some informal caregivers participate in web-based forums related to their caregiving role. This study aimed to explore how informal caregivers use easy-to-access caregiving web-based forums, including the types of information they share and seek from others... Domains identified included handling interpersonal challenges, navigating complicated systems, gathering tactical coping strategies, managing emotions, and connecting with others in similar situations... Informal caregivers play an essential role in society. Many experience multifaceted challenges related to their caregiving role, and some turn to the internet for community. Accessing web-based discussion forums is a low-barrier method for informal caregivers to connect with others who may be experiencing similar emotions and challenges. Gaining a greater understanding of the ways informal caregivers seek advice and offer support to one another provides insight into the challenges they face.

Proposed framework for setting practical and ethical boundaries in medicineJAMA Internal Medicine; Sarah C. Hull, MD, MBE; Nancy R. Angoff, MD, MPH, MEd; 2/25At a national conference session addressing challenges for women in cardiology, one of us (S.C.H.) was struck by a junior attending physician’s account of her struggle to establish boundaries, expressing her desire to be helpful and collaborative as well as her reticence to decline requests lest she appear unkind. Reflecting on my own experience, I realized that women are often socialized to avoid saying no for fear of disappointing others or appearing selfish, but this socialization has not served us well. Indeed, this is a common refrain we have heard from young women entering the medical profession. Our anecdotal experience matches data suggesting that, compared with men, women are more likely to be asked and less likely to decline low-promotability task requests.

Health policy challenges for 2025 and beyondJAMA Health Forum; Lanhee J. Chen, JD, PhD; 1/25Despite multiple reform attempts, the US health care system is still burdened by high costs, limited access to quality care, and policies that have resulted in the inefficient delivery of care. However, technological advances, insights from the COVID-19 pandemic, and approaching policy deadlines, such as expiration at the end of 2025 of enhanced coverage subsidies available through the Affordable Care Act (ACA), offer policymakers a reason to act. The next few years will present policymakers with opportunities to address key health care challenges, including the future of Medicare, the continuing implementation of the ACA, and the health care provisions included in the federal tax code. The new administration and Congress will have their hands full in 2025 because the expiring tax and subsidy provisions are action-forcing events. Lawmakers will face a unique opportunity to reform the system in a way that improves accessibility and affordability and enforces some measure of fiscal discipline, and to make decisions that could positively affect the future of health care for millions of individuals in the US.