~ Hospital Futility Policy Disclosures ~
Mary Kellet, mother of Peter (1/5/05 – 8/20/11) and founder of Prenatal Partners for Life, testified to Minnesota legislators about Minnesota Senate bill SF2238, titled Hospital Futility Policy Disclosure. This bill was authored and introduced to the Minnesota Senate March 15, 2012 by Senator Sean Nienow. It defines “futility policy,” and requires hospitals to disclose to the Department of Health their futility policies applying to people under 18 years old. As of 3/19/2012 the Senate bill had passed the Senate committee considering it and the House version (HF2797) had been introduced.
“The bill passed the Senate and the House version will be presented sometime next week. There is a bill in the works at the Federal level; written but not yet introduced. Please let people know that most hospitals have these policies and the public is unaware. After we learned how Peter had died, I told my story to a Senator and a lawyer. They were both shocked and did some research. They found out that the hospitals had these policies and the public knew nothing about them. They wrote the bill and I testified and it’s moving forward. Please post this to any of the trisomy groups”. Mary Kellett, March 2012
Here is Mary Kellet’s testimony to the Senate Committee which considered the bill:
Testimony in Support of SF2238
Thank you, Mr. Chair for the opportunity to speak before the committee. My name is Mary Kellett and I am a resident of Maple Grove.
I am a mother of 11 children the youngest of which, Peter, had a condition known as Trisomy 18. I want to speak in support of Senate file 2238 and tell you my story because I believe it is important for you to know as you consider the need for this legislation.
Peter’s story- when I was 19 weeks pregnant, an ultrasound revealed markers for a condition called trisomy 18. We were offered an amnio, which we refused because we didn’t want to risk hurting our baby. We were told we would have more choices if we knew for sure. We said we would never abort our baby, but would love him no matter what he had. We named him Peter. We were told there were no survivors beyond 2 weeks with trisomy 18 and that most people aborted babies like this. At 33 weeks I had an emergency c-section. Peter weighed 3lbs and 2oz. Peter was given excellent care until day 2 of his life when a fish test revealed he did have trisomy 18. At that time it was recommended to us that we stop all treatment, wrap him up in a blanket and let him die. We were told he would lead a life of terrible pain and suffering and would never know us or respond to us. My daughter went on the Internet and found many children living with this, some in their twenties and thirties. When I asked the doctor why he had lied to me, he said, “ Well how these children do largely depends on the choices their parents make for them.” I responded,” How can parents make decisions when they don’t receive accurate information.” He then said, “Well, we have to think about resources and you know Peter will never be able to contribute to society and will be a horribly burden to your family.” I started to cry, because I knew resources meant money and it hurt so badly to have a doctor tell me my son wasn’t worthy of the needed treatment to help him live.
Another woman doctor who I had never met until after Peter was born came into my hospital room and said she wanted to talk to me as a mother, not as a doctor. She
said that if I wanted to be a good mother to my other children, I had to let Peter go, because he would be a burden to our whole family and it would not be fair to them. I could do nothing but cry. We were told our son’s heart defect was fatal. Something told me the doctor was not telling the truth, so we made our own appointment with a pediatric cardiologist who shook his head and said Peter’s heart was stable and functional, but he did need a minor surgery called a PDA ligation. The doctor at the hospital told us that Peter was not a candidate for this surgery that was described to us as open-heart surgery. We were asked why we would want to put our son through that. It was not open heart surgery but a minor procedure to close a blood vessel. This is just a small example of the incomplete, inaccurate information and out right lies we received. We were pressured over and over to sign a DNR. We were even told we could not receive home care visits from a nurse unless we signed a DNR. I called the director of the home care-nursing program and asked her if this was true. She was flabbergasted and told us this was not their policy, nor had it ever been their policy. When I confronted the doctor about that she said, “Well they must have changed their policy, to which I responded no, it has never been their policy. We were very concerned about our son’s welfare. It was very hard leaving him at the hospital, knowing they felt as they did. We called the head doctor of the NICU at the U of M for a second opinion and shared our concerns. When the doctor at the hospital Peter was staying at found out, she was very angry. The next day she said we had 2 choices, we could take Peter home or we could transfer him to Childrens, she already called and they had a bed ready for him. She said we had to leave HER hospital.
We decided to take Peter home. He only weighed 3lbs 11oz. He thrived on all the love and attention and grew and did many things we were told he would never do, like drink from a bottle and eat by mouth. He knew us and loved us, and we loved him. He was the happiest, sweetest little boy, who was everyone’s favorite. He was never, every a burden, only a joy and a blessing. He made us all better and taught us so much about love and compassion for others. He was the best of us. Peter died at Children’s hospital in Mpls at the age of 6 1/2 after having his appendix removed. I have to wonder if he was a victim of their hospital’s futility of care policy. I have talked to many other families who also have children with disabilities that have similar concerns and stories to share. By having this policy, doctors and hospitals are making a value judgment about children that only parents have the right to make.
In conclusion, I want to say that this bill simply gives parents the right to know if a hospital has a futility policy and what it is. It provides a level of consumer protection in health care choice. Parents shouldn’t carry the burden of fear and stress over the policies of the hospital, especially during a medical crisis. They have a right to know before they bring their child, disabled or not, to that hospital. And they have a right both legally and naturally, to be the decision makers of their child’s health care. Please pass this bill. Thank you.