Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities

Abstract

As many people with intellectual disabilities (ID) live longer, the need for access to quality palliative care (PC) rises. People with ID realize significant barriers and inequities in accessing healthcare and PC. The need for integrated disability and PC services with extensive collaboration is great. The following tips are for PC clinicians caring for people with ID, their families, caregivers, and the community. While patient-centered care is difficult to distill into 'tips', this article, written by an interdisciplinary team of PC and ID specialists, offers resources and references to improve the care provided to people with ID and serious illnesses.

Retrospective review of the code status of individuals with Down syndrome during the COVID‐19 era

“…This finding has significant implications as the difference in code status was associated with a chronic diagnosis alone and not an acute indication for admission or acute status. Our study provides concerning data supporting clinicians and disability advocates worries expressed during the COVID‐19 pandemic regarding bias in code status for patients with DS (Chicoine et al, 2022; Moore et al, 2022). Unfortunately, a cyclical method of thinking can be seen in patients who are not offered the same level of care resulting in poorer outcomes; the prevalence of poorer outcomes could then be seen to justify providing less care.…”

“…This finding has significant implications as the difference in code status was associated with a chronic diagnosis alone and not an acute indication for admission or acute status. Our study provides concerning data supporting clinicians and disability advocates worries expressed during the COVID-19 pandemic regarding bias in code status for patients with DS Moore et al, 2022).…”

“…In the COVID‐19 era, clinicians and disability advocates raised concerns that bias, diagnostic overshadowing, and ableism could impact the allocation of code status for patients with DS with theoretical effects on treatment options and overall health outcomes (Chicoine et al, 2022; Moore et al, 2022). Yet this was not previously studied, and we began this study to study mortality and code status for individuals with DS through retrospective review of the Vizient® Clinical Data Bases (Vizient Inc, 2023a) which our research team previously used to demonstrate a shift in care experienced by patients with DS during the COVID‐19 era (Gleason et al, 2021).…”