Factors that influence discussions about end of life between people with intellectual disability and disability support staff

Introduction: Despite growing recognition that people with intellectual disability have the right to understand and make decisions regarding dying, death and end-of-life care, little is known about the factors that influence whether discussions about this topic actually occur. Methods: We conducted focus groups with 16 people with intellectual disability and 15 disability support staff. Participants were asked about their experiences of engaging in a 6-month intervention aimed at increasing knowledge and decision making about dying and death. The results were thematically analysed. Results: Participants identified the following factors that influenced discussions about dying, death and end-of-life care: the nature of the relationships between participants; rules, policies and legal issues; individual capacity, experiences and preferences; and the availability of resources. Implications: The findings have implications for how disability services can support their staff to sensitively encourage discussions with people with intellectual disability about end-of-life. Recommendations for practical resources, relationship facilitation, and policy will be discussed.