What does it mean to be a person? The Portland Tribune’s article (“The Ethics of Blue’s Body,” Jan. 19) poses this question through the story of Blue and her mother, Cyndy. The article tells the story of a 4-foot-tall girl who has very brittle bones due to the effects of hypercalcemia. She also has an intellectual disability that severely limits her ability to participate in her own medical decision-making.
Cyndy has asked doctors at Doernbecher Children’s Hospital to effectively end Blue’s natural process of growth and maturity. She asks that Blue be given the Ashley Treatment — removing her uterus and breast buds. The goal is to stop Blue’s growth so that she can be more easily cared for by the family.
As the article notes, this type of treatment arose from the case of a 6-year-old in Washington state whose doctor and parents proceeded with the surgery without prior review or oversight. Disability Rights Washington investigated these events, issued an investigation report, and ultimately entered into an agreement with the hospital where the procedure was performed. It acknowledged that Ashley’s rights had been violated and a court order and ethics review, from a panel including a person with disabilities, was needed before another Ashley Treatment would be considered.
Here in Oregon, state law says a parent or guardian may not consent to the sterilization of a minor. The sterilization of an adult who is incapable of making medical decisions may occur only by court order. The only exception is if sterilization would be a secondary effect of surgery that is necessary to treat another health problem.
We have this law because of our long and shameful history of forcibly sterilizing people with disabilities. In 2002, Gov. John Kitzhaber officially apologized to the more than 2,600 Oregonians who were subjected to this practice over 60 years. He remarked upon “the growing awareness of the need to safeguard human dignity and to ensure that the state relegates no one to second-class citizenship.”
The primary question here is whether Blue’s intellectual disability will be permitted to affect the decision by Doernbecher. If the primary purpose of the surgery would be to assist the family in more easily caring for Blue, it reveals a conflict between the family’s interest and Blue’s legal and human right to develop naturally. This complexity of interests is why Oregon law calls for a court hearing before taking such drastic, irreversible steps.
Ethics committees also play an important role in decisions of this kind and should include someone with an understanding of disability rights.
Because similar issues arise when end-of-life decisions are made for another person, the Oregon POLST Task Force published specific guidelines for “persons with significant physical disabilities, developmental disabilities and/or a significant mental health condition.” The guidelines note: “Persons in these groups have been subject to biases resulting in under-treatment and/or had their chronic health conditions mistaken as an illness nearing the end of life.”
Blue, a person with a disability, is first and foremost a person who is entitled to the same legal and ethical protections as anyone else. We urge those involved to honor her human rights.
For more information, see: www.ndrn.org/images/Documents/Resources/Publications/Reports/Devaluing_People_with_Disabilities.pdf