By Nancy Valko
Editor’s note. HB 1915, Simon’s Law, has two basic components. First, a health care facility must let a patient, resident or a prospective patient or resident know if they have a futility policy that will limit care in any way. Second, a do-not-resuscitate order cannot be placed in a minor child’s medical file without the written permission of at least one parent or legal guardian.
As Nancy indicates in this post, which appeared at nancyvalko.com, she submitted the following testimony to Dr. Frederick and all the members of the Health committee of the Missouri Legislature on Simon’s Law for a February 16 hearing.
I am a past member of the Down Syndrome Association in St. Louis, an RN and legal nurse consultant and most importantly, the mother of a daughter who had special needs.
I cannot be at the hearing tomorrow but please accept my testimony in favor of Simon’s Law:
In September 1982, I gave birth to a beautiful baby girl we named Karen. Karen was born with both Down syndrome and a severe heart defect called a complete endocardial cushion defect. A pediatric cardiologist was called in and even before I left the recovery room, he gave me the bad news about our Karen’s heart defect and even said that it was inoperable. He said to take Karen home where she would die in 2 weeks to 2 months.
This doctor turned out to be wrong. Further testing revealed that Karen’s heart defect could be fixed with one open heart operation and she had a 90% chance of survival.
My husband (a doctor) and I (an ICU nurse) were determined that our daughter receive the best medical care possible for her heart condition and without bias because she had Down syndrome. We knew about the recent “Baby Doe” case where the parents of a baby boy with Down syndrome and an easily correctable tracheoesophageal fistula refused surgery so that their baby would die.
The case went to court and a judge ruled that the parents could make that lethal choice. As medical professionals, we were appalled by this case but at least we could make sure that our daughter would have her chance at life. Or so I thought.
The bias against children like Karen soon became apparent when the cardiologist said he would support us “100%” if we chose to let our Karen die without surgery. I had to insist that Karen be treated for her heart defect the same way any other child would be treated for the same heart defect. To do otherwise was medical discrimination and illegal.
Then, the surgeon recommended for Karen’s pre-op heart catheterization was overheard questioning the wisdom of even treating “all these little mongoloids”! Another doctor sympathetically told us that “people like you shouldn’t be saddled with a child like this.” We were stunned by this negative view of children with Down syndrome.
Later on when Karen developed a pneumonia that was being successfully treated in the hospital, I found out that my trusted pediatrician had even made Karen a “Do Not Resuscitate” behind my back because I “was too emotionally involved with that retarded baby.” The DNR was rescinded and we took Karen home but I found it hard to trust any doctor after that.
Unfortunately, Karen developed another bout of pneumonia and died of complications just before her scheduled open-heart surgery. But even at the very end, when Karen was apparently dying, a young resident physician “offered” to pull all her tubes so that she would die as soon as possible.
I reported this young man to the chief of pediatric cardiology who was furious with the resident. (This chief of cardiology later started a clinic for children with Down syndrome to meet their special health needs.)
Although we lost Karen when she was just 5 ½ months old, I still treasure my time with her and because of her, I became an advocate and volunteer for people with disabilities.
I wish I could say that my story is unique but I have seen many similar situations over the last three decades involving people of all ages with disabilities.
Therefore, I beg you to approve Simon’s Law. It will potentially save lives as well as send a strong message that medical discrimination against the disabled based on subjective judgments of “medical futility” and/or predicted “poor quality of life” is wrong.
Nancy Valko, RN ALNC