Batbold, Sarah

ImportanceIncarcerated patients admitted to the hospital face threats to their rights to privacy and self-determination in medical decision-making. Little is known about medical decision-making processes for hospitalized incarcerated persons who lack decisional capacity.ObjectiveTo characterize the prevalence of incapacity among hospitalized incarcerated patients and describe the decision-making processes, including who served as surrogate decision-makers, involvement of prison employees in medical decisions, and ethical concerns emerging from the patients’ care.Design, Setting, and ParticipantsRetrospective descriptive and qualitative study of medical records for all patients admitted from prison for at least 24 hours between January 1, 1999, and September 1, 2019, at a large Midwestern academic medical center. Data analysis was performed from March 15, 2021, to December 14, 2022.Main Outcomes and MeasuresPrevalence of prison-to-hospital admissions for patients with a loss of capacity and characteristics of medical decision-making.ResultsDuring the 20-year study period, 462 patients from the prison were admitted to the hospital, totaling 967 unique admissions. Of these, 131 admissions (14%) involved patients with a loss of capacity and 43 admissions (4%, representing 34 unique patients) required surrogate decision-making. Ten of these patients had advance directives. Surrogate decision-makers often faced decisions about end-of-life care (n = 17) or procedural consent (n = 23). A family member was identified as surrogate decision-maker in 23 admissions. In 6 cases with a kindred surrogate, additional consent was requested from a prison employee. In total, prison employees were documented as being present during or participating in major medical decisions for half of the admissions. Five themes emerged from thematic analysis: uncertainty and misinformation about patient rights and the role of prison employees in medical decision-making with respect to these two themes, privacy violations, deference to prison officials, and estrangement from family and friends outside of the prison.Conclusions and RelevanceIn this first in-depth description, to date, of decision-making practices for hospitalized incarcerated patients lacking decisional capacity, admissions of these patients generated uncertainty about their rights, sometimes infringing on patients’ privacy and autonomy. Clinicians will encounter incarcerated patients in both hospital and clinic settings and should receive education on how to support ethically and legally sound decision-making practices for this medically vulnerable population.

Individuals with Down syndrome (DS) experience increased risk of Alzheimer’s disease (AD). Recent studies suggest that a vaccine against AD may be forthcoming. Parental buy-in is critical to the success of any intervention in this population, as adults with DS often rely on familial support. This study aims to characterize parents’ perceptions of a hypothetical vaccine to prevent AD in individuals with DS. A mixed-methods, anonymous survey was distributed via social media. Participants were asked about their experiences with DS and reactions to proposed interventions. Open-ended responses were thematically analyzed using NVivo 12. Of 1,093 surveys initiated, 532 were completed. Of the parents sampled (N = 532), a small majority (54.3%), supported the proposed AD vaccine. All expressed the need for extensive pre-enrollment education and minimal risk. For many, limited research and long-term sequelae were concerns.

INTRODUCTION: Bile acid (BA) diarrhea is the cause in ∼26% of chronic unexplained (nonbloody) diarrhea (CUD) based on 75 SeHCAT testing. To assess fecal BA excretion and healthcare utilization in patients with CUD. METHODS: In a retrospective review of 1,071 consecutive patients with CUD who completed 48-hour fecal BA testing, we analyzed the symptoms, diagnostic tests performed, and final diagnoses. RESULTS: After 135 patients were excluded because of mucosal diseases, increased BA excretion was identified in 476 (51%) of the 936 patients with CUD: 29% with selective increase in primary BA and 22% with increased total BA excretion (35% with normal primary BA excretion). There were no differences in demographics, clinical symptoms, or history of cholecystectomy in patients with elevated total or selective primary fecal BA excretion compared with patients with normal excretion. Before the 48-hour fecal BA excretion test was performed, patients completed on average 1.2 transaxial imaging, 2.6 endoscopic procedures, and 1.6 miscellaneous tests/person. Less than 10% of these tests identified the etiology of CUD. Total fecal BAs >3,033 µmol/48 hour or primary BAs >25% had a 93% negative predictive value to exclude mucosal disease. Among patients with increased fecal BA excretion, >70% reported diarrhea improved with BA sequestrant compared with 26% with normal fecal BA excretion. Patients with selective elevation in primary fecal BAs were 3.1 times (95% confidence interval, 1.5–6.63) more likely to respond to BA sequestrant therapy compared with those with elevated total fecal BAs. DISCUSSION: Increased fecal BA excretion is frequent (51%) in patients with CUD. Early 48-hour fecal BA evaluation has the potential to decrease healthcare utilization in CUD.