For Immediate Release
Nov. 20, 2019
WASHINGTON – Today, the National Council on Disability (NCD)—an independent federal agency that advises the President and Congress-- released a study examining decisions by healthcare providers to withhold or withdraw lifesaving or life-sustaining medical care for people with disabilities.
The study, Medical Futility and Disability Bias, found many healthcare providers critically undervalue life with a disability, where they deem treatment “futile” or “nonbeneficial” – oftentimes despite the wishes of the patient to the contrary. They may at times rush medical determinations without properly following well-established guidelines, such as in the case of persistent vegetative state.
In its review, NCD found well-documented examples of doctors misperceiving people with disabilities to have a low quality of life when, in reality, most report a high quality of life and level of happiness, especially when they have access to sufficient healthcare services and supports. NCD found that these misperceptions of health care providers can be the result of failing to separate acute symptoms from one’s underlying disability when making medical judgments and can lead to the withdrawal of necessary medical care from people with disabilities.
In Medical Futility and Disability Bias, NCD found hospital ethics committees charged with mediating and rendering medical futility decisions are subject to financial, professional, and personal conflicts of interest, and that legal patient protections against this form of discrimination are sporadic across states. All states have at least one statute that relates to medical futility – whether it be by shielding a health care provider’s decision to deny life-sustaining care, protecting the patient’s right to life-sustaining care, or something in between.
Very rarely do medical futility disputes make it to a court of law due to financial and time constraints.
“It is very disturbing that nineteen states, plus Guam and the U.S. Virgin Islands, have laws that allow healthcare providers to deny life-saving or life-sustaining treatment and provide no protection of a patient’s wishes to the contrary,” said NCD Chairman Neil Romano. "We know too many people with disabilities who were told or whose parents were told that they’d never live to see a particular birthday, and decades later, their lives and contributions challenge the maxim that doctors always know best,” he said. “And in these instances, we’re talking about implications of life and death.”
Key findings and recommendations from Medical Futility and Disability Bias include:
- Healthcare providers’ medical futility decisions are impacted by subjective quality-of-life judgments, without requiring education or training in disability competency and, specifically, in the actual life experiences of people with a wide range of disabilities. Many healthcare providers critically undervalue life with a disability.
- When physicians diagnose persistent vegetative state (PVS) or “brain death,” they sometimes rush to make this determination and do not properly follow the American Academy of Neurology’s (AAN) well-established and widely respected guidelines, robbing individuals of their chance to recover.
- Internal ethics committees for mediating and rendering medical futility decisions are subject to financial, professional, and personal conflicts of interest.
- Hospitals are rarely transparent with their medical futility policies to patients and the general public.
- All states have at least one law that relates to medical futility. Of these, 19 state laws protect a physician’s futility judgment and provide no effective protection of a patient’s wishes to the contrary; 18 state laws give patients a right to receive life-sustaining treatment, but there are notable problems with their provisions that reduce their effectiveness; two state laws require life-sustaining measures for a limited period of time pending transfer of the patient to another facility; 11 states require the provision of life-sustaining treatment pending transfer without time limitations; and one state prohibits the denial of life-sustaining treatment when it is based on discriminatory factors.
- Medical futility decisions implicate numerous federal and state constitutional, statutory, and regulatory provisions, including the Fourteenth Amendment of the U.S. Constitution, the Emergency Medical Treatment and Active Labor Act (EMTALA), Section 504 of the Rehabilitation Act, the Americans with Disabilities Act (ADA),
and Section 1557 of the Affordable Care Act (ACA).
- Congress should enact legislation that requires hospitals and other medical entities to have due process protections for medical futility decisions; utilize an independent due process mechanism for mediating and deciding medical futility disputes; and disclose medical futility policies to patients, their surrogates, or their family members. Additional legislation is needed to make federal funding for hospitals and other medical entities contingent on the provision of due process protections in medical futility decisions.
- The US Department of Health and Human Services (HHS) Office for Civil Rights (OCR) should issue guidance to healthcare providers clarifying that medical futility decisions that rely on subjective quality-of-life assumptions or biases about disability violate federal disability rights laws, and withhold federal financial assistance when compliance cannot be obtained from hospitals and medical facilities that violate disability rights laws by making medical futility decisions that rely on subjective quality-of-life assumptions or biases about disability.
- HHS should encourage hospitals and medical facilities to use an independent due process mechanism for mediating and deciding medical futility disputes and disclose medical futility policies to patients, their surrogates, or their family members. OCR should issue guidance to healthcare providers clarifying that medical futility decisions that rely on subjective assumptions or biases about disability violate federal disability rights laws.
Read this and all of the reports in NCD’s Bioethics and Report Series at https://ncd.gov/publications/2019/bioethics-report-series
About NCD’s Bioethics and Disability Series
NCD’s bioethics and disability report series focuses on how historical and current devaluation of the lives of people with disabilities by the medical community, researchers, and health economists perpetuates unequal access to medical care, including life-saving care. NCD has released the following reports on our website at ncd.gov: Organ Transplant Discrimination Against People with Disabilities; The Danger of Assisted Suicide Laws; Genetic Testing and the Rush to Perfection; Quality-Adjusted Life Years and the Devaluation of Life with a Disability; and Medical Futility and Disability Bias.
About the National Council on Disability
First established as an advisory council within the Department of Education in 1978, NCD became an independent federal agency in 1984. In 1986, NCD recommended enactment of an Americans with Disabilities Act (ADA), and drafted the first version of the bill which was introduced in the House and Senate in 1988. Since enactment of the ADA in 1990, NCD has continued to play a leading role in crafting disability policy, and advising the President, Congress and other federal agencies on disability policies, programs, and practices.