On Friday May 23, the Autistic Self Advocacy Network (ASAN), Not Dead Yet, and 12 other disability rights organizations filed an amicus brief in a case challenging the University of Wisconsin Hospital Center’s alleged practice of counseling families of people with developmental disabilities to withhold care for treatable but potentially life-threatening medical conditions, such as pneumonia. (Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al., Case No. 2014 AP 135, Wisconsin Court of Appeals, District IV.)
According to the amended complaint, one thirteen-year-old child died of pneumonia and one adult was denied care after University of Wisconsin Hospital physicians advised families to withdraw antibiotics, nutrition, and hydration. When the child’s regular caregivers objected to withdrawing treatment, UWHC physicians allegedly encouraged the family to have him transferred to the University of Wisconsin Hospital, where he was taken off of antibiotics, nutrition, and hydration, and transferred to hospice care. He died the next day.
In both cases, Disability Rights Wisconsin claimed, doctors allegedly based their determinations on their patients’ supposedly low quality of life as individuals with disabilities, and acted without the approval of the hospital ethics committee.
“We need the court to recognize that people with disabilities shouldn’t be refused care simply because a doctor doesn’t think their lives are worth living,” said ASAN’s Director of Public Policy, Samantha Crane, who authored the brief. “Often, this sort of judgment serves as cover for discriminatory denials of care.”
ASAN’s amicus brief was authored in collaboration with Not Dead Yet, a disability rights organization that advocates against legalization of assisted suicide, euthanasia, and non-voluntary denial of lifesaving treatment for people with disabilities, The brief argues that UWHC’s policies are emblematic of pervasive, nationwide medical discrimination against people with disabilities and that legal protections are necessary to protect vulnerable individuals from deadly denials of care.
“The concern that many of us with lifelong severe disabilities have is that children with disabilities are not receiving the same legal protection as nondisabled children,” said Diane Coleman, Not Dead Yet’s President and CEO. “A disabled child with parents who prefer to withhold medical care that would save the child, or who succumb to pressure from hospital doctors to withhold care, should not be permitted to deprive their child of a future just because the parents and doctor harbor common prejudices against life with disability.”
The trial court initially dismissed Disability Rights Wisconsin’s claim that UWHC doctors had violated patients’ rights under the constitutions of either Wisconsin or the United States, leading to this appeal.
Under Wisconsin law, parents of nondisabled children are required to provide medical care when necessary to save the child’s life. In 2013, the Wisconsin Supreme Court upheld the homicide convictions of parents who had failed to seek medical attention for their child, who died of untreated diabetes. (Wisconsin v. Neumann, 832 N.W.2d 560 (Wis. 2013).)
UWHC Ethics Committee Chair Norman Fost, who is also a defendant in the lawsuit, has taken multiple controversial positions on the rights of children with disabilities, including his defense of the use of electric shocks to modify the behavior of children and adults with disabilities and his support of the “Ashley Treatment,” which involves removing the reproductive organs and artificially stunting the growth of children with developmental disabilities.
(See Douglas Diekema & Norman Fost (2010), Ashley Revisited: A Response to the Critics, American Journal of Bioethics 10(1):30-44; Transcript, U.S. Food and Drugs Administration, Neurological Devices Panel (April 24, 2014).)
ADAPT, American Association of People with Disabilities, American Council of the Blind, Association for Autistic Community, Association of Programs for Rural Independent Living, Autism Women’s Network, National Association of the Deaf, National Council on Independent Living, National Disability Rights Network, Quality Trust for Individuals With Disabilities, United Spinal Association, and the Wisconsin Board for People With Developmental Disabilities also joined the amicus brief.