Positioning the issues : an agenda for future end-of-life research, policy and practice

Regardless of disability, race or creed, the inevitability of death is an undeniable part of our common humanity. Recognising this shared reality, one theme of this book is awareness of end-of-life issues in the general community and how they apply to people with intellectual and developmental disability. Chapter 1 focuses on end of life for everyone, and many subsequent chapters mention the general-community context. In this present chapter, we many mention issues current in the broader end-of-life literature that have not yet received attention in the intellectual and developmental disability field and are therefore not represented elsewhere in this book. We also refer to topics presented in the disability-specific chapters. However, our intention is not to summarise points made elsewhere, as the respective chapter authors have presented their concerns clearly. Instead, we consider several cross-cutting or overlooked issues to put forward important parts of a practical research, policy and practice agenda intended to assist people with intellectual and developmental disability to have opportunities they want for active participation, social inclusion and self-determination in all end-of-life dimensions.