Discussing end-of-life with people with intellectual disability : anxiety, depression and fear of death

Introduction: People with ID have few opportunities to understand or plan for end-of-life. Increased understanding requires repeated participation in conversations and activities about end-of-life. However, carers fear that the person will become upset, so they avoid these topics. The limited evidence suggests most people with ID can talk about dying and death without distress, but no previous research has measured the psychological effects of extended exposure to conversations about end-of-life. Methods: We measured anxiety, depression and fear-of-death of adults with ID at pre-test and 6 months later. Results: During the 6-month intervention, compared to pre-test, intervention participants doubled the number of weekly conversations with disability staff about end-of-life. Most conversations were initiated by the person with ID. Weekly total conversation time also increased. Talking about dying and death did not make people more fearful, anxious, or depressed. At 6 months, intervention and comparison participants scored the same or better than their pre-test scores on all psychological measures. Implications: Concerns about doing harm are unfounded. Families, service providers and researchers can have end-of-life conversations and support people to engage with the topic, without fear of negative psychological consequences. However, sensitive judgements are needed, as some individuals were quite fearful.