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

J Appl Res Intellect Disabil. 2017 Nov;30(6):1057-1064. doi: 10.1111/jar.12363. Epub 2017 May 24.

Abstract

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.

Keywords: advance directives; critical discourse analysis; emergency medical services; end-of-life; intellectual disabilities; medical orders.

MeSH terms

  • Attitude of Health Personnel*
  • Decision Making*
  • Emergency Medical Services*
  • Health Care Surveys
  • Humans
  • Intellectual Disability*
  • Qualitative Research
  • Terminal Care*