While the primary focus of our public comment was the denial of life-sustaining healthcare treatment based on negative disability biases, we mentioned the issue of equality in suicide prevention as well, for example, here:
As HHS has indicated in its discussion of the proposed rule, biases about the impact disabilities have on “quality of life” are endemic among medical professionals. One manifestation of these discriminatory attitudes is the failure to treat suicidal depression in people with disabilities, including older individuals, although other people with suicide ideation are routinely offered suicide prevention services.
The Department responded to a variety of comments about the scope of the new rule as follows:
Comments: Many commenters asked the Department to specifically clarify other forms of medical treatment that § 84.56 would apply to, including assisted reproductive technology treatment, suicide prevention services, mental health services, and others.
Response: As indicated previously, the Department intends § 84.56 to apply in a broad and inclusive fashion to a wide array of medical treatment services, including assisted reproductive technology treatment, suicide prevention services, mental health services, and others. “Medical treatment” is used in § 84.56 in a generic, nonspecific manner; it is intended to be broad and inclusive. It refers to the management and care of a patient to identify, address, treat, or ameliorate a physical or mental health condition, injury, disorder, or symptom, whether or not the condition constitutes a disability and whether the medical approach is preventive, curative, habilitative, rehabilitative, or palliative. Although it is not possible to provide an exhaustive list of such services, recipients should interpret the term medical treatment in the broad and inclusive fashion intended by the Department.
So the rule prohibits disability discrimination in suicide prevention services. Since people who qualify for assisted suicide in states where it’s legal are disabled by their health impairments, they are covered by this protection. At a minimum, their reasons for wanting to die must be addressed as part of suicide prevention.
NDY also commented on the problem of QALYs and other similar assessment methods, beginning with this:
Disability-biased value assessment methods are based on the bigoted premise that life with a disability has lesser value than life without a disability. They are inherently discriminatory and are in direct conflict with the concept of equal rights. An example of a value assessment method that overtly devalues people with disabilities is one that uses a quality adjusted life years (QALY) calculation. . . .
The Partnership to Improve Patient Care (PIPC) and many other organizations also weighed in on this issue and responded with the following about the new rule:
As described in the final rule, the new regulations would bar health care decisions made using measures that discount gains in life expectancy, which would likely include the quality-adjusted life year (QALYs) and the combined use of QALYs and equal value of life years gained (evLYG). HHS’ rule represents a critical step forward to protecting patients and people with disabilities and sends a strong message that we need better solutions for U.S. decision-making that don’t rely on the biased, outdated standards used by payers in the U.S. and other countries. Although we look forward to increased clarity related to the standards set in the final rule as cases are reviewed by the Office for Civil Rights, we appreciate the agency’s broad interpretation of what constitutes the discriminatory use of value assessment in its description of the rule.
PIPC has also offered additional information and recommendations.
NDY will next be reviewing the treatment denial and “futility” provisions.
