Medical Futility and Disability Bias Part of the Bioethics and Disability Series
National Council on Disability November 20, 2019 National Council on Disability (NCD) 1331 F Street NW, Suite 850 Washington, DC 20004
Medical Futility and Disability Bias: Part of the Bioethics and Disability Series
National Council on Disability, November 20, 2019
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The views contained in this report do not necessarily represent those of the Administration, as this and all NCD documents are not subject to the A-19 Executive Branch review process. National Council on Disability An independent federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families.
Letter of Transmittal
November 20, 2019
The President The White House Washington, DC 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD), I am pleased to submit Medical Futility and Disability Bias, part of a five-report series on the intersection of disability and bioethics. This report, and the others in the series, focuses on how the historical and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, perpetuates unequal access to medical care, including life-saving care.
When a physician decides that providing or continuing health care treatment would be “medically futile” to a patient, there are a number of objective, evidence-based factors that can impact this decision. Underrecognized, however, is that a physician’s subjective judgments about whether a patient’s life would be “worth living” should they receive treatment and survive, can also play a role in decision making. This latter consideration is a frightening concept for many people with disabilities because some health care providers, most unknowingly, harbor biases and misperceptions about the quality of life and capacities of people with disabilities. These assumptions can and have impacted physicians’ willingness to provide or continue life-sustaining care to a patient that has, or will have if they survive, a disability classified as medically “severe.”
In recent years, there has been a push to regulate medical futility decisions on the state and institutional levels. State laws, which vary greatly in their content and approach, define the protections, or lack thereof, of a patient’s wishes to receive life-sustaining treatment. Hospitals have turned to process- based approaches, utilizing internal ethics committees to arbitrate medical futility disputes. Despite the increased attention, however, disability bias still finds its way into futility decision making.
The lives of people with disabilities are equally valuable to those without disabilities, and health care decisions based on devaluing the lives of people with disabilities are discriminatory. Medical Futility and Disability Bias provides an overview of the multiple perspectives on medical futility decisions relating to people with disabilities and analyzes how state and federal laws can be strengthened to prevent disability bias from impacting critical care decisions. It shows that additional protections are needed to ensure that a patient’s wishes are followed; their life-sustaining treatment is not removed pending transfer to another facility; and, in the absence of their competency and advance directive, a neutral, unbiased, and independent decision-making body is in place. It concludes by outlining recommendations that can remedy such discrimination.
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