Emergency medical services providers' perspective of end-of-life decision making for people with intellectual disabilities

Background: Emergency medical services (EMS) providers are often called to rapidly determine and act upon patients' wishes for end-of-life care. People with intellectual disabilities are living increasingly longer with complex conditions leading to international calls for person-centred advance care planning. Yet, best estimates suggest that very few people with intellectual disabilities document their wishes. Methods: This exploratory-descriptive study incorporated mixed methods to analyse data collected consecutively (surveys, n = 239; interviews, n = 48) with EMS providers from five agencies. Data were subjected to a sequential quantitative–qualitative analysis applying a critical discourse analysis framework. Results: Findings indicate that 62.7% had treated a person with intellectual disability who had medical orders directing end-of-life care. Three themes (provider familiarity, organizational processes, sociocultural context) offer insights about how medical orders inform EMS providers during calls involving people with intellectual disabilities. Conclusion: Multiple contexts influence how wishes are documented and care provided to people with intellectual disabilities near life's end.