Intellectual disability and the end of life

Authored by: Laura A. Kicklighter

The Routledge Companion to Death and Dying

Print publication date:  May  2017
Online publication date:  May  2017

Print ISBN: 9781138852075
eBook ISBN: 9781315723747
Adobe ISBN:


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Death and dying in the context of intellectual disability introduces myriad problems and challenges that are overlooked by standard bioethical approaches. While people with intellectual disabilities are now living into old age, this population has historically experienced discrimination in health care access and delivery, including palliative care at the end of life. In addition, the current trend toward deinstitutionalization and community integration introduces new challenges as people with intellectual disabilities receive health care from mainstream providers. This chapter will explore the need for new approaches to death and dying in relation to intellectual disability and analyze the ways in which intellectual disability challenges standard approaches to end of life care and decision making. Alternative approaches to end of life care for patients with intellectual disabilities will also be explored and assessed.

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