Literature Review

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.

Pursuing equity with artificial intelligence in health careJAMA Health Forum; Kevin B. Johnson, MD, MS; Ivor B. Horn, MD, MPH; Eric Horvitz, MD, PhD; 1/25The National Academy of Medicine defines equitable AI as “applications accompanied by proof of appropriate steps to ensure fair and unbiased development and access to AI-associated benefits and risk mitigation measures.” Health care–providing organizations deploying AI must take responsibility for monitoring and achieving equitable performance. There is much to learn as we face the challenge of understanding how AI applications affect long-standing inequities and discovering the best ways to harness AI to address them. By embedding equity considerations at every stage of AI development and deployment, the US can start to take meaningful steps toward using AI’s growing capabilities to tackle pressing problems in health care. 

Risk factors for and health status of socially isolated adultsJAMA Network Open; Tarun Ramesh, BS; Kushal Kadakia, MSc; Marcela Horvitz-Lennon, MD, MPH; Joshua Breslau, PhD, ScD; Hao Yu, PhD; 1/25In 2023, the Surgeon General issued an advisory on the epidemic of loneliness and social isolation, calling for more research and policy interventions to address these challenges. The overall prevalence of social isolation in our study was 3%, which is lower than other determinants of health, such as smoking, poverty, and inadequate health insurance. Our results indicate 3 broad and likely interrelated populations at risk for social isolation, including racial and ethnic minority groups, those with financial insecurity (ie, unemployed, uninsured, lower income), and those with chronic health conditions, with depression being a large factor. We also found that the socially isolated adults reported worse health status compared with those without social isolation.

Measures to prevent and control COVID-19 in skilled nursing facilities-A scoping reviewJAMA Health Forum; Benjamin E. Canter, OTD; Agne Ulyte, MD; Brian E. McGarry, PhD; Michael L. Barnett, MD, MS; 1/25Skilled nursing facilities (SNFs) experienced high mortality during the COVID-19 pandemic, leading them to adopt preventive measures to counteract viral spread. This scoping review identified 16 preventive measures, both nonpharmacologic (eg, staffing, visitor restrictions) and pharmacologic (eg, vaccines, antivirals) interventions. Nonpharmacologic measures were widely implemented but lacked evidence for effectiveness, whereas vaccinations and antivirals showed substantial benefits but were underutilized; up-to-date vaccination status was suboptimal in residents and staff and only a minority of infected residents received antiviral treatment.

Compassion in the justification of physician-assisted dying: Gandhi’s non-violence vs. Aristotle’s virtues and vicesMedicine, Health Care and Philosophy; Ercan Avci; 1/25Compassion is an essential phenomenon in the therapeutic relationship, and some use it to justify physician-assisted dying practices. However, different approaches to its definition and scope can lead to distinct conclusions about the role of compassion in end-of-life interventions. In this context, the paper aims to compare Mahatma Gandhi’s and Aristotle’s views on compassion to explore whether it can be utilized to justify physician-assisted dying. Gandhi’s thoughts on compassion and Aristotle’s standpoint on virtues and vices demonstrate that Gandhi evaluates this concept as a moral duty to relieve intractable suffering, whereas Aristotle relies on balancing all virtues through relevant deficiencies and excesses. Therefore, even though Gandhi’s opinion on compassion can for allow assisted dying interventions, Aristotle’s idea of virtues and vices restricts compassion to a scope that alleviates suffering through available means without causing death.

Lived experiences of patients hospitalized with acute decompensated heart failure and kidney dysfunctionJAMA Network Open; Gwen M. Bernacki, MD, MHSA; Ann M. O’Hare, MD, MA; Mahlet Assefa, MD; Kevin D. O’Brien, MD; David K. Prince, PhD; James N. Kirkpatrick, MD; Nisha Bansal, MD, MAS; Catherine R. Butler, MD, MA; 1/25This qualitative study of patients currently or recently hospitalized with ADHF [acute decompensated heart failure] and kidney dysfunction offers a window on the lived experiences of members of this medically vulnerable group. Study participants offered vivid accounts of how their illness had impacted their day-to-day lives, sense of self, life priorities, and hopes and expectations for the future. However, many lacked a detailed understanding of the medical aspects of their illness and did not always feel equipped or empowered to actively participate in their care. Our findings suggest that there may be untapped opportunities to improve quality of communication for patients with ADHF and kidney dysfunction. 

Reimagining care and research for Amyotrophic Lateral SclerosisJAMA Neurology; Suma Babu, MBBS, MPH; Joshua M. Sharfstein, MD; Eva L. Feldman, MD, PhD; 1/25Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease involving progressive motor neuron degeneration. In 2022, US Congress and the National Institutes of Health (NIH) commissioned the National Academies of Science, Engineering and Medicine (NASEM) to identify priorities to make ALS a livable disease within a decade. After extensive deliberations and input from the public, researchers, and persons with lived experience, the committee released its report, Living With ALS. To accelerate progress in patient care and therapeutics, one of the report’s major recommendations was for the National Institute of Neurological Disorders and Stroke (NINDS) to fund a clinical trials network dedicated to ALS that is distributed across diverse geographic regions and integrated within a novel hub-and-spoke system of care and research for ALS. The hubs are ALS Centers of Excellence that provide patient care and research, both basic and clinical, while the spokes represent a large number of community and regional ALS clinics that provide care and link to hubs for research. By integrating ALS clinical trials within this structure, we have the potential to transform ALS care, drive innovation in ALS therapeutic development, and pave the way for breakthroughs in other neurodegenerative diseases. 

Impact of inpatient palliative care on end-of-life care among patients with early-onset colorectal cancerJournal of Clinical Oncology; Suriya Baskar, Bohae R Lee, Rajiv Midha, Udhayvir Singh Grewal; 1/25Palliative care has proven benefits in elderly patients with advanced cancer; however, the objective benefits of palliative care in younger patients with cancer remain under-studied. We sought to examine the impact of inpatient palliative care consultation on end-of-life (EOL) care among hospitalized patients with early-onset colorectal cancer (EO-CRC). Inpatient palliative care consultation at EOL among patients with EOCRC was associated with lesser use of aggressive interventions and higher rates of DNR code status. We also noted significantly lower costs of hospitalization among patients receiving inpatient palliative care consultation at EOL. These results underscore the importance of integration of inpatient palliative care consultation among patients with EOCRC at EOL. 

Underused palliative care could aid stroke survivorsJAMA; Samantha Anderer; 1/25Every year in the US, 800,000 people experience strokes, and although most survive, current treatment plans fail to adequately address their physical, emotional, psychosocial, and spiritual distress, according to a new scientific statement from the American Heart Association. Palliative care could aid in the quality of life for both patients and their families by helping during all stages of poststroke care, including adapting to functional changes, navigating complex health care systems, and preparing for death when necessary. Although all affected individuals could benefit from palliative care, the statement noted that it is most underused in Black and Hispanic populations, which tend to have a higher incidence of stroke, worse functional outcomes, and a lower likelihood of receiving acute stroke treatments.