Press Release: Not Dead Yet, Autistic Self Advocacy Network and 12 Other Disability Groups File Friend-of-Court Brief in Wisconsin Case Alleging Medical Care Withheld Due to Disability

[Editor’s Note:  For a pdf formatted version of this press release, and link to the friend-of-the-court brief in Word format, go here.]

On Friday May 23, the Autistic Self Advocacy Network, 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 (Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al., Case No 09-CV-2340, filed January 8, 2010, Wis. Circuit Court of Dane County), 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.

2 thoughts on “Press Release: Not Dead Yet, Autistic Self Advocacy Network and 12 Other Disability Groups File Friend-of-Court Brief in Wisconsin Case Alleging Medical Care Withheld Due to Disability

  1. Thank you for making the friend-of-the-court brief available for reading, and for your comments on this Wisconsin case that challenges The University of Wisconsin Hospital Center’s alleged practice of counselling families of people with developmental disabilities to withhold care for treatable but potentially life-threatening medical conditions, such as pneumonia”- – –

    The position of of the defendants and the state of law in Wisconsin seems contradictory to me in that the law punishes the failure of the parents of children who fail to secure life-saving “medical” treatment for their children because of religious convictions by convicting these parents of felony homicide —-but yet appears to put no limits on hospitals/physicians who receive public funding and who are state actors and who shorten life and hasten death arbitrarily and unilaterally with NO substantive due process protections for the patients whose lives are unilaterally shortened, i.e., not even a review by the hospital ethics committee.

    (Of course, Hospital Ethics Committees are not free of conflict of interests when so often the treatments within the hospital of elderly and disabled edicare and Medicaid patients are NOT reimbursed to the hospitals by Medicare and Medicaid Insurance, and private insurance, because of punishing reimbursement protocols passed into Medicare/Medicaid law since 2005, Thaddeus Pope, the foremost historian and expert on medical futility and the law writes about the the failure of Hospital Ethics Committees to meet due process of law protections in his Medical Futility Blog.

    You indicate also in your comments that “The Trial Court initially dismissed Disability Rights Wisconsin’s claim that UWHC doctors had violated patients’ rights under the constitution of either Wisconsin or the United States, leading to the appeal. ” It appears to me from my research of the law, as a lay person, that neither the state or the federal courts want to hear any lawsuits that, if won by the complainant, will in any manner suggest that the person/patient has any constitutional right to medical care that saves or extends their lives, and especially if if they are elderly and frail or if they are suffering from chronic disabilities. It appears to me that the 20 year discussion about the parameters of “medical futility” has been a “red herring” to divert the attention of the public from the reality of state-sponsored involuntary euthanasia of the elderly/disabled on Medicare/Medicaid insurance for fiscal expediency.

    A paper written by Douglas O. Linder, a Professor of Law, University of Missouri, Kansas City, in the Arizona Law Review in the Winter of 1995, entitled “The Other Right-to-Life Debate: When Does Fourteenth Amendment “life” End? ” indicates in a paragraph entitled: “The Constitutionality of State attempts to Expedite Death and Biological Existence or Deny Life Sustaining Treatment to Non-PVS patients? Today the debate may be whether to terminate the lives (or biological existences) of PVS patients; tomorrow the debate may turn to another set of patients or biological compositions.) One scenario has a society increasingly concerned with cost-cutting and economic efficiency withholding care from the terminally ill, the seriously disabled, or the very aged. The second scenario has growing numbers of persons looking to science or quackery for new ways to extend their lives, or at least prolong their biilogical existences. Although both situations implicate due process issues, the analyses are very different. The terminally ill, seriously disabled, or very aged are “pesons” in the fullest constitutional sense. Moreover, individuals in these conditions, however torn they may be between a personal choice of life or death, clearly have interests in continuing their lives. Were a state intentionally to take the life of any of these persons without their consent, it would do so in violation of the Due Process Clause. The framers and ratifiers of the Fourteenth Amendment were familiar with terminally ill people, disabled people, and the aged. There is no evidence to suggest that individuals in these conditions were not considered “persons” or that their lives were deemed less worth of protection from state deprivations that the lives of anyone else:”

    In the Nancy Cruzan Case in Missouri, that went to the Supreme Court, the higher courts cautioned in their deliberations about the dangers of permitting anyone, especially the physicians, to shorten the lives of patients without proof of!their informed consent. Missouri law, therefore, requires the signature of two witnesses to any DNR Code status that is placed in the charts of patients in Missouri hospitals.

    But, I know, because of my personal experience involving a covert and unilateral DNR that was placed into my husband’s hospital chart in a Missouri Hospital in 2011 that the hospitals feel free to violate Missouri law whenever necessary in order to hide non-reimbursable medical errors and to limit costly treatments that they KNOW will not be reimbursed to them by CMS or private insurance.

    I have reported this covert DNR to the federal government who would not investigate the unilateral DNR as a violation of the 1991 PSDA and to the state government who apparently will not investigate the unilateral DNR as a violation of the Elder Abuse Laws of Missouri.
    There appears to be no recourse for patients who are the victims of the unilateral covert/overt(default) DNR Code Status or for the Hospital’s failure to honor advanced directives because both scenarios are treated as merely ethics violations by mutual agreement of the states because of the 1991 PSDA.

    It appears to me that the 1991 Patient Self Determination Act passed by the US Congress that prohibits a private right of action for patients who are the victims of hospital “code” discrimination that involves both the right to die and the right to live does effectively protect hospitals and physicians from charges from hospital patients on Medicare and Medicaid that their civil rights or legal rights or constitutional rights have been violated by unilateral DNRs or the failure of the hospital to honor their advanced directives.

    I believe that there is no doubt that the chronically disabled and the frail elderly on Medicare and Medicaid insurance are the targets of cost controls and victims of discrimination in publicly funded hospitals and that their constitutional rights are violated. I would hope that the Wisconsin Appeals Court will take a closer look at the discrimination that is revealed by the facts of the case to include an inquiry as to whether or not these two patients would have become or were already charity patients of the hospital when their rights were violated.

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