The updating of the 504 Regulations by the Department of Health and Human Services under the Biden-Harris administration is historic. Various provisions included in the amendment interact and work together to promote equal access to healthcare for persons with disabilities. Not Dead Yet’s response to the  Department’s request for public comment when the updates were proposed was focused primarily on section 84.56 which explicitly prevents discrimination in medical treatment based on disability. While our public comment did not result in any text changes, the Department addressed virtually all the points we had raised in its commentary to the final rule and did so in favorable fashion.

Section 84.56(a) provides that a person may not, on the basis of disability, be subjected to discrimination by a recipient of federal funding. (Throughout this blog, the term recipient will be used to refer to a health care provider receiving federal funds.)

Section 84.56(b) goes on to state that “a recipient may not deny or limit medical treatment to a qualified individual with a disability when the denial is based on: (i) Bias or stereotypes about a patient’s disability; (ii) Judgments that the individual will be a burden on others due to their disability, including, but not limited to caregivers, family, or society; or (iii) A belief that the life of a person with a disability has lesser value than the life of a person without a disability, or that life with a disability is not worth living.” The Department  makes clear that this list of prohibited discriminatory criteria is not exhaustive.

NDY along with other commenters asked the Department to affirm that the section is intended to apply both to persons with existing disabilities and those whose prognosis includes disability. They did so. They stated that “Where a person’s prognosis is the result of impairments in a major bodily function, they would be considered a person with a disability under section 504… section 504 protects persons who are ‘regarded as’ having such an impairment. In cases of illness or injury so severe that a person needs a ventilator and tube feeding, or where a person is regaining consciousness after brain injury…although it will be a fact-specific inquiry, the individuals in these scenarios would almost certainly be covered under the definition of disability.”

In response to issues we and others raised about infants, the Department stated that it intends that this rule will generally apply to the provision of medical treatment for infants, including those seeking treatment for separately diagnosable symptoms or conditions related to their underlying disability, when medical treatment is provided to other similarly situated children. They give as examples a child with microcephaly with treatable seizures or a newborn with Down syndrome with a heart problem.

Section 84.56(c) prohibits a recipient from discriminating on the basis of disability in seeking to obtain consent from an individual or their authorized representative for the recipient to provide, withhold, or withdraw treatment. In our public comment we recounted a case documented in the National Council on Disability’s report on medical futility and disability where doctors gave parents of an infant with a significant disability misleading information about the child’s survivability because they felt that the child would be a social burden if he lived and wanted the parents to consent to the withholding of treatment. We were gratified the Department referred to this case to illustrate the type of scenario that is now prohibited.

The importance of the anti-steering provision cannot be overestimated. Indeed, it is a fair bet that this is the part of Section 84.56 that will prove most controversial with the medical community. Healthcare providers often think that it is part of their job to “guide” people to decisions they want them to make concerning whether or not to refuse treatment based on the presence of disability. (A future blog will deal with a study concerning the premature removal of life  support due to disability fears).

The ethicist Thaddeus Pope has already raised the specter of a woman with advanced dementia being forced to undergo the optimal but arduous treatment for stomach cancer because the  provider cannot make a “quality of life” judgment based on the woman’s dementia.

Ironically, the Department’s commentary on Section 84.56 discusses almost the exact scenario. The intent of Section 84.56 is to put patients with disabilities on the same plane as other patients.   Section 84.56(c) gives persons with disabilities (or their authorized representatives) the same right to refuse or stop treatment that all individuals have. As the Department states, a provider “can discuss with the patient or their authorized representative the implications of different courses of treatment, including whether treating the cancer is inconsistent with their preferences in light of anticipated complications…In addition, the physician informing the patient of anticipated side effects from treatment and the patient choosing to decline further life-sustaining treatment based on the patient’s belief that extending their life would not be of benefit to them is generally not in violation.”

What the doctor cannot do is to pressure, induce or cajole a person into saying “no” to life-saving treatment because the person is disabled or is expected to have a disability. They should not be pressing their personal attitudes about never wanting to “live like that” on others. Some ethicists, even as they say they promote self-determination, may disagree with this, but it is inaccurate to say that Section 84.56 forces people to submit to unwanted treatment. 

It is to be noted that Section 84.56 does not limit the power of authorized representatives to make medical decisions. We were the one commenter to ask the Department to clarify that the regulation does not preclude Federal or State law from limiting the power of an authorized representative, including with respect to decisions regarding refusing life-sustaining care. The Department confirmed that such limitations would still be in effect. Thus, there is work disability advocates can do on the state level to reduce anti-disability “steering” and promote true informed consent.

Lastly, we raised concerns about how the following provision could be interpreted: “A recipient may not, on the basis of disability, provide a medical treatment to an individual with a disability where it would not provide the same treatment to an individual without a disability, unless the disability impacts the effectiveness, or ease of administration of the treatment itself, or has a medical effect on the condition to which the treatment is directed.”

The Department indicates that the provision should be read as allowing a provider to pursue a different course but with the same end when a person’s disability would impact the efficacy of the usual approach. The Department gives as an example a situation where an individual recovering from a foot or leg injury or surgery, who also has an anatomical loss of an arm, is prescribed a knee scooter even though the recipient would otherwise recommend crutches. The Department affirms that it would be discriminatory to deny any extra accommodation, expense, or time required for treatment related to a person’s disability. Advocates will need to watch and see how this plays out.

The update to Regulation 504 combined with the Americans with Disabilities Act will do much to lessen the healthcare prejudices people with disabilities face. It is not the end of the fight but possibly it is the end of the beginning. Thank you, HHS!