Lessons About Autonomy from the Experience of Disability

Abstract

In health care, respect for autonomy is a prominent moral value. It is used to ground policies and practices about informed choice, the right to refuse treatment (including life sustaining treatment), truth telling, confidentiality, advance directives, and others. It is used as the key argument for controver sial acts such as physician-assisted suicide and abortion. Professional organi zations have written respect for autonomy into their codes of ethics and standards for practice. When moral values conflict, respect for autonomy is often applied to settle the matter. Yet, despite this prominence, people who access health services rarely use the term which suggests that autonomy, at least as it is currently conceived, may not speak to their experi ence or needs. Some attention to those experiences may be useful to guide our understanding of autonomy and to look critically at theories of autonomy that are operative, or potentially operative, in health care contexts. The experiences of people with disabilities are well suited to address this need. Following recent developments in the World Health Organization's International Classification of Impairments, Disabilities and Handicaps, I use the term to refer to an identifiable variation of human functioning. Its three dimensions are impairments, activity limitations and participation restrictions. This biopsychological model of disability brings together both medical and social approaches to disability.1 This view of disability can involve a broad range of physical, intellectual, and sensory impairments that dampen function in some way. It can arise in contexts that are life-threatening (e.g., cancer, heart disease) or non-life-threatening (e.g., quadriplegia, schizophrenia). It can be constant, highly variable, or progres sively deteriorating. It can have early or late onset. In addition to limitations to body function, this view of disability can include limitations to human activity and limitations to participation in a broader social context. So, for example, environmental, cultural, and social barriers that limit opportunities can contribute to the experience of disability.