NCD Statement on Bioethics and Medical Decision Making for People with Disabilities in Advance of Upcoming Report

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February 5, 2019

FOR IMMEDIATE RELEASE

WASHINGTON, D.C -- The National Council on Disability (NCD) strongly opposes the medical community, or anyone, making broad generalizations about the quality of life for a person with a disability. Despite the growing understanding that disability is a normal part of the human experience, the lives of persons with disabilities continue to be devalued in medical decision-making. The devaluation of persons with disabilities has been widely recognized, and is apparent on the face of laws and policies that allow hospitals and physicians to deny or withhold care based on subjective criteria on quality of life, such as denying a young boy a life-saving liver transplant because he has autism, and denying a life-sustaining medical treatment to a woman with quadriplegia because the medical team determines that she will be dependent on the care of others if she survives. People with disabilities routinely face down ardently pronounced, but inaccurate predictions by medical professionals. Countless people with disabilities have been told that they or their children would not survive, they would not regain consciousness, etc. At worst, these predictions have turned out to be dangerously inaccurate and, at best, guesswork. When a doctor describes to expectant parents that it will be expensive and emotionally burdensome if they choose to have a child that genetic tests show may have a disability, that description should also include the alternative description of a child born with a disability and the available supports needed to flourish. However, the latter description is often omitted.

NCD is in the midst of studying a variety of issues around medical decision-making and bioethics, and the impact on the lives of people with disabilities. As part of NCD’s work we are examining the medical community’s consideration of quality of life. 

Medical decisions that limit access to life-saving care or deny medical treatment to persons with disabilities based on the perception that a life lived with a disability has lesser quality and value – or no value – are discriminatory. While there are situations where there are legitimate grounds for not providing medical treatment – treatment should not be denied because a person has a disability. Sound medical decisions and advice should value the lives of all persons, whether disabled or not, and not use the person's disability as the basis for a decision to withhold medical treatment or to assist in terminating a life.

 

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