On October 8, 2020, Not Dead Yet, National ADAPT, ADAPT of Texas and the Autistic Self Advocacy Network joined in a friend-of-the-court (“amicus”) brief filed by Texas attorney Michelle Hayes to support Tinslee Lewis and her mother’s case to maintain life support. The “strange bedfellows” amici groups include disability rights, religious and pro-life organizations.
Tinslee Lewis is a 20-month-old girl on life support at Cook Children’s Medical Center (“Cook”) in Fort Worth, Texas. Due to a heart defect, she is on a ventilator. Tinslee has been reported to be conscious and interactive when she is not under sedation. NDY wrote about Tinslee’s case, including video from a local television interview with her mother, here. Since 2019, Cook hospital has worked to withdraw Tinslee’s life support.
The lower court in the case issued a temporary injunction against Cook requiring life support to continue pending the results of a trial on the facts and relevant legal issues. The Court of Appeals for the Second District of Texas held the Texas futility law unconstitutional. Now Cook has petitioned the Supreme Court of Texas for review, seeking to overturn the Court of Appeals ruling and the injunction without a trial on the merits.
The “Amicus brief for Tinslee”, and previous court documents, are posted on the Medical Futility Blog here.
The opening argument in the Amicus Brief raises disability discrimination issues:
In a recent study, the National Council on Disability found that healthcare providers often misperceive disabled individuals to have a low quality of life, and this can result in discriminatory determinations that life-sustaining medical care is futile and should be withdrawn.1 The Council concluded that protections are needed to ensure (1) the patient’s wishes are followed; (2) life-sustaining medical care is not removed pending transfer; and (3) that in the absence of patient competency and an advanced directive, a neutral, unbiased, and independent decision maker is in place with a right to judicial appeal.2 . . .
1 See National Council on Disability, Medical Futility and Disability Bias (Nov. 20, 2019), at *10. https://ncd.gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf (last accessed Oct. 7, 2020).
2 See id. at *42.
The brief also explains how the Texas futility law violates constitutional due process rights.
When the decision to remove a person’s life-sustaining medical treatment is made, appropriate due process protections would include:
-
- adequate notice of the hearing;
- a high burden of proof, such as clear and convincing evidence, placed on the
party advocating withdrawal of life-sustaining treatment; - the right to legal counsel;
- the right to call and cross-examine witnesses;
- a neutral decision maker;
- a record of the proceedings;
- and a right to appeal.
The Texas futile care law also appears to have been relevant in the death of Michael Hickson, a 46-year-old Black husband and father with a brain injury who was denied treatment for COVID-19. His doctor told his wife in a recorded conversation that his quality of life was too low.
Disability advocates must continue fighting these futility laws that grant legal immunity to medical providers that unilaterally withdraw life support from people with disabilities against our will or the healthcare decisions of our chosen surrogates.