Positioning the Issues: An Agenda for Future End-of-life Research, Policy and Practice

Michele Y Wiese, Roger J Stancliffe, Philip McCallion, Mary McCarron


This concluding chapter brings together the key points offered by the book’s contributors and aims to rally collective thinking and action towards the future. Ensuring that people with intellectual and developmental disability have real opportunities for active participation, social inclusion and self-determination across all dimensions of dying and death requires support—from people with disability themselves, families, researchers, policy makers, practitioners and communities. This chapter puts forward ideas for a practical research, policy and practice agenda to help guide achievement of these outcomes.

Suggested Citation

Wiese, M. Y., Stancliffe, R. J., McCallion, P., & McCarron, M. (2022). Positioning the issues: An agenda for future end-of-life research, policy and practice. In R. J. Stancliffe, M. Y. Wiese, P. McCallion, & M. McCarron (Eds.), End of life and people with intellectual and developmental disability: Contemporary issues, challenges, experiences and practice (pp. 435–463). Palgrave MacMillan. https://doi.org/10.1007/978-3-030-98697-1_16


Book Chapter 
Palgrave Macmillan


  • Community life
    • Aging and retirement