Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities

Abstract

Background There is insufficient evidence to guide decisions around (non-)disclosure of bad news of life-limiting illness and death to people with intellectual disabilities. Aim The aim of this study was to develop guidelines for decisions about (non-)disclosure of bad news around life-limiting illness and death to people with intellectual disabilities, by examining stakeholders' preferences (and reasons) around disclosure and non-disclosure. Materials and methods Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals. Results People with intellectual disabilities had wide-ranging views about disclosure. Reasons for non-disclosure included: preventing distress; too difficult for the bearer of bad news; the bearer of bad news lacks knowledge; inability to understand; no sense of time; conflicting views among stakeholders. Reasons for disclosure included: a right to know; knowledge helps the person cope; need for involvement. Conclusion Disclosure of bad news could cause harm in some situations, but this needs careful assessment. The authors present guidelines for disclosure that now need to be tested in practice