Caring for Intellectually and Developmentally Disabled Patients in the ICU

Key Message: Intellectual and developmentally disabled (IDD) individuals face significant healthcare disparities, and the American Medical Association has recommended IDD patients be considered a Medically Underserved Population. Unfortunately, clinicians often struggle communicating and treating end-of-life symptoms in IDD patients. Innovative techniques and tools are required to improve end-of-life care for IDD patients.

Abstract: Intellectual and developmental disability (IDD) is defined as an individual with cognitive limitations, usually with an IQ lower than 70. Worldwide prevalence of IDD is 2–3% with evidence showing IDD population is increasing. Patients with IDD undergo more hospitalizations, and longer hospital stays when compared to the general population. Despite these factors, clinicians may feel ill-equipped to discuss goals of care with IDD patients and their caregivers, and struggle assessing distressing symptoms.
In the case of a 23-year-old patient with nonverbal autism disorder admitted to the ICU for severe pulmonary tuberculosis infection and hypercarbic respiratory failure, medical teams struggled with discussing and treating end-of-life symptoms with his family. The medical team often misinterpreted his nonverbal cues of distress and discomfort as attentiveness and agreement causing conflicts with his family who were afraid to leave his bedside. Goals of care also seemed straightforward such that it was a shock to the ICU team when his family asked to transition to comfort-focused care. Palliative care team was consulted to assist with patient’s transition to comfort care. Using validated tools, such as the Disability Distress and Discomfort Assessment Tool (DisDat), family provided valuable guidance on how to compassionately communicate with the patient and identify patient’s non-verbal cues for pain and agitation, bridging the communication gap between medical teams, the patient, and his family.
Unfortunately, most clinicians generally have limited experience caring for IDD patients and may not be aware of specialized tools available to assess symptoms. Validated tools, such as the DisDat or picture-based systems, can assist with communication, symptom interpretation, and guide treatment decisions to improve end-of-life care in IDD patients. This presentation will also identify frameworks available to clinicians to evaluate symptom management in IDD patients and provide guidance on how to create trusting relationships with our IDD community.

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