A Twin Cities Legal Aid Attorney Researches Discrimination in Neonatal Medical Protocols

 

The summer of 2009 in Minnesota saw a mother and her son Jason disappear after a court ordered the son to undergo chemotherapy. The mother did not want her son to undergo the treatment, though she had been warned by medical professionals that her son could die without it. As controversy flared in the press and at dinner tables, Minnesotans became aware of the ethical and legal questions that the situation presented.  When a child is ill, it is accepted that the child’s parents choose how the child is treated.  Doctors make treatment recommendations and implement the parents’ wishes. And if parents fail to authorize treatment that will save the child’s life, the medical system reports a case of child neglect to state authorities, as happened in Jason’s case.  But what if Jason was a child with a very severe disability such as spina bifida?  What if the doctors said “chemotherapy will save his life, but his paralysis and cognitive limitations are so severe, we think you should let the cancer take him to end his suffering?â€?

Jay Wilkinson has represented children and people with disabilities throughout his work as a legal aid attorney in Minneapolis in the three decades following his graduation from the University of Minnesota Law School. In 2009, Jay took a sabbatical from his regular work in civil rights enforcement and was awarded an Upper Midwest Human Rights Fellowship funded by the Mansfield Foundation and the Otto Bremer Foundation.  He pursued his interest in human rights, disability law and medical ethics through his research and writing on international human rights for disabled infants.

Jay traveled to Belgium to work with the International Federation for Spina Bifida and Hydrocephalus (IF). While there, he met with individuals with spina bifida and their families investigated the practices of doctors who counsel the parents of children who are born with serious disabilities and researched a range of international human rights protections for people with disabilities. In a paper that IF is publishing for distribution to legislators in Europe and disability rights activists around the world, he analyzes a protocol used by doctors in the Netherlands and similar practices found in other countries. The Groningen Protocol encourages doctors to advise parents to authorize active measures to end newborns’ lives or to stop life-preserving treatment if the baby is believed to face a lasting and very severe impairment. These practices are justified by doctors’ belief that some babies will grow up and have a very poor quality of life and that continuing their lives will be worse than death.

The United States and the United Nations are committed by law to protecting the human rights of persons with disabilities.  In the United States and other countries, discrimination on the basis of disability is illegal.  Jay argues that when doctors counsel parents that a child’s life will not be worth living because of disabilities they act on stereotypes and violate our anti-discrimination laws. Jay finds that international human rights instruments, such as the Conventions on the Rights of Persons with Disabilities and the Rights of the Child are violated by counseling parents to end a child’s life, because the key factor on which the recommendation turns, by the Protocol’s own definitions, is the anticipated disability of a child who would otherwise live.  Jay does not  suggest that those laws apply to the decision that parents may make in such difficult situations, nor does he say that when an infant is dying, counseling about the manner and timing of death are wrong. He advocates that doctors give parents of infants with severe impairments the often difficult prognosis, the best available information about life with disabilities, and counseling which does not tilt decisions against the possibilities for life. 

Jay is grateful for the Upper Midwest Human Rights Fellowship, which assisted a long-time public interest lawyer to expand his knowledge into a new field, while at the same time bringing his civil rights enforcement experiences to bear on the cause of international human rights for children with disabilities.

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