July 12, 2024
HHS Office of Inspector General – Chief Counsel Division
P.O. Box 85200
Austin, Texas 78708
Email: IG_Rules_Comments_Inbox@hhsc.state.tx.us
RE: Proposed Regulations published in the June 14, 2024 Texas Register
Dear Chief Counsel:
Not Dead Yet is a national disability rights organization focused on combatting disability- based healthcare discrimination, particularly in the context of advanced or terminal illness. Our comment concerns the regulations to implement the 2023 amendments to the Texas Advance Directives Act governing DNR orders and medical futility conflicts (H.B. 3162) proposed by the Texas Health and Human Services Commission.
Section 166.046 of the Texas Health and Safety Code now requires an ethics or medical committee that reviews a physician’s refusal to honor an advance directive or health care or treatment decision to consider the patient’s wellbeing and not make any judgment on the patient’s quality of life.
In a similar vein, new Section 166.0465 of the Texas Health and Safety Code provides that such a committee may not consider a patient’s disability that existed prior to the current admission, unless the disability is relevant in determining whether the medical or surgical intervention is medically appropriate.
Section 166.0465 must be read in conjunction with Section 166.046 which forbids quality of life judgments whatever the patient’s circumstances. The thrust of H.B. 3162 is to make the process under which an ethics or medical committee evaluates disputes over the withholding of possibly life preserving care more fair and less influenced by bias against disability.
To be consistent with H.B. 3162, the regulations should clarify that the prohibition against an ethics or medical committee considering a patient’s disability applies to both a pre-existing disability or any disability that is anticipated to arise from the person’s injury or disease.
This conclusion is further supported by healthcare regulations under Section 504 of the Rehabilitation Act. In connection with the updating of the 504 Regulations by the federal Department of Health and Human Services to explicitly prohibit discrimination in health care based on disability, the Department 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….[as an example] 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… the individuals in these scenarios would almost certainly be covered under the definition of disability.”
The clarification we are asking for is consistent with both the intent of H.B. 3162 and federal law.
Thank you for your time and consideration.
Sincerely,
Diane Coleman, JD, President/ CEO
Lisa Blumberg, JD, Consultant
Thank you, Diane Coleman and Lisa Blumberg! As a baseball coach might say: “Good eye, good eye!” (for catching that fine point). Anticipated disability is important to clarify. Indeed, discrimination on the basis of future quality of life is very much at the heart of the issue.