Neonatal Euthanasia And Disability Discrimination

Without much consideration of the subject, I would have agreed that it is best to let infants with severe impairments die rather than subject them to lives of suffering and pain. In the past two years, we helped my parents through their last months of life and helped insure that they did not get excessive treatment. We did as they specified in their written advance directives for medical care. I am convinced that this was moral, legal and the right thing for them and our family.

But what if:

Indian doctors recommended that some female infants be euthanized because of the high probability that they will suffer domestic abuse in their rigid, patriarchal villages and face a life of suffering and poverty?
Saudi medical societies discovered tests that showed with 60% accuracy which boys would grow up to be gay and gave parents the option to not resuscitate if they suffered respiratory distress in the hospital, in order to spare the parents and the children the pain of living in a homophobic society?
Russian hospitals considered fewer treatment options for sick infants of Roma parents, because they know that Romas' lives are not healthy and for some, their lives will be unproductive and filled with ill-health anyway?

I, my friends and my fellow campaigners for human rights would be outraged by such discrimination and violence against innocents and the oppressed.

I have been amazed to learn that in advanced, wealthy societies which value human rights, doctors advise parents to take active measures to end newborn lives because the baby has a severe impairment, as is done in the Netherlands according to the Groningen Protocol. Or that doctors advise parents to stop treatment of premature newborns because there is a 60% chance that they will have a severe or moderate degree of disability, as is done in Portland, Oregon. Or that hospitals will go to court to get permission to stop treatment of disabled newborns, over parents objections, as they have done in the U.K. and the U.S..

What I have learned is that when a doctor looks at a newborn with spinal bifida or other serious medical condition, she can sometimes predict that there will be limitations on mobility when she is a teen. The doctor can sometimes predict that the baby will grow up with limited bladder and bowel control. The doctor can sometimes predict that the adult will have very limited cognitive abilities. But even these very basic predictions are not often very inaccurate.

I learned that there is surprising little to show that medical predictions of quality of life actually reflect what people with impairments and their families experience. In fact, some studies show that teens with spina bifida assess themselves as having better life quality than the assessments of peers without disabilities. People living with impairments almost always self-rate as having a higher quality of life than the medical system predicts.

What they find to be problems are the prejudices and barriers that greet them in everyday life – things that we can change, even if the impairment cannot be cured.

What I have come to understand is that those lives of supposed suffering and pain are the lives of my family, my co-workers, and my neighbors. And it probably mine some day.

But the lives of the people I know are not defined by their impairments, the things they cannot do, but by the things they do and the lives they live.

I know that life's joys, a person's unique contributions, her progress in life, and her relationships, are far more important characteristics than a collection of symptoms. Those limiting conditions do not take away an advocate's capacity to protect clients' rights. They do not eliminate the ability to teach and inspire others with physical challenges. Such troubles do not take away the pleasure of hearing the Beatles “Help!” or Beethoven's 5th Symphony for the 700th time. Even a person with profound impairments can reflect and deepen a family's love and provide others with appreciation of both their own capacities and the value of diversity in the world. Living with disabilities can help us redefine and move us all closer to perfection.

I also began to look at this as a disability rights lawyer. The Dutch medical and legal system has endorsed a protocol for the active steps to hasten the death of infants based on predictions that the infant will have a serious “functional disability.” Wait a minute, I thought, that is pure and plainly expressed discrimination – the treatment changes according not to need, but to disability.

The Dutch protocol also includes other factors: pain, discomfort, poor prognosis, and hopelessness, lack of self-sufficiency, inability to communicate, and hospital dependency. Pain and discomfort is not inevitable. The high chances for unbearable pain, if predictable for some, is not a reason to allow all to die. The factors of “lack of self-sufficiency”, “inability to communicate”and “hospital dependency” are each descriptors of this same predicted “functional disability.” The “poor prognosis, and hopelessness” factor is a cumulative judgment, rather than a separate item of analysis. The core facet they consider is a prediction of disability. Further, because some people with the impairment will have a poor quality of life, they apply an assumption, a stereotype, that every baby with that condition should be administered life-ending treatment.

So, I conclude that the entire conceptual basis for the practice is rooted in discrimination against disabled and discrimination against children.

The same conclusion is reached when I looked at counseling protocol of a hospital in Oregon. Parents of newborns are told that standard practice is to not resuscitate babies under 25 weeks gestation, even though most of them would live and an estimated 40% of survivors would not have even moderate disabilities in later life.

The fact that proponents of these practices claim humanitarian goals and the best interests of the child as motives, even if true in their minds, does not make the discrimination disappear or ethical or legal. Progressive thinkers and legal policies have rightfully turned away from so-called humanitarian discrimination that kept women out of employment, kept races in segregated communities, and people with disabilities in institutions – all “for their own good” .

I believe that an ethical decision can be made to end all but palliative treatment for an infant who is on the cusp of life and death, who will live only with the most extreme interventions or will have no consciousness. This should be left in the hands of informed parents who have not only the medical perspective, but also full information about the real lives of people with severe impairments. It will be the hardest thing they do in their lives, whatever their decision. The human rights approach considered here should not be used to second-guess their decisions. It advocates a public policy that makes certain that families are not pushed to make regrettable choices because of institutional or professional stereotypes about disabilities.

A real benefit of the publication of the Groningen Protocol and the Oregon neonatal standards and procedures is that they provide a chance to add new considerations, to update and make current comprehensive information about the lives of people with impairments a pat of the consideration and to raise these legal and ethical issues. The Dutch and Oregon doctors have done so because they want to act ethically and consistently and for that they deserve recognition. However, should any medical providers say “We will decide that your baby should die for his own good, because there is a chance that he will have severe problems due to impairments?” I do not think so. It is unethical, it is discrimination.

The International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities sets standards for all people and all nations for the protection, inclusion and advancement of people with disabilities and I am very happy to assist the International Federation for Spina Bifida and Hydrocephalus and its allies to show up the inconsistencies between the Convention, other human rights standards and practices such as these. I have written an analysis addressing these medical decision-making processes under a variety of international human rights instruments. Find out more from IF at www.ifglobal.org

Thanks to the U of Minnesota Human Rights Center to and IF for sponsoring my Fellowship and the Legal Aid Society of Minneapolis and my family for allowing time off to work on this project. Thanks to IF, European Disability Forum and European Community Commission staff who have helped me to better understand spina bifida, disabilities and international human rights laws.