Senate Health and Human Services Committee Colorado

February 16, 2006

My name is Kate Adamson-Klugman and I’m like millions of other disabled Americans. Today I have been asked to come and speak to you because I have a very unique perspective. Most people, who will testify about this problem, will be telling you about things that they have to speculate about — acting as fortune tellers. I’ll be sharing from my own personal experience — I have been there. I needed a feeding tube to survive and was disconnected from my feeding tube for eight days. I have suffered what is currently allowed under Colorado law to be done to the medically vulnerable, the elderly and the weak. I know just how painful it is — to just not feed someone.

I’d like to make three points:

First, no one knows what they will want at the end of life — until they get there.

Second, it’s very painful to starve someone and finally, feeding someone through a tube is not a heroic use of 21st Century machine and science; it’s a natural thing. We all need to eat or we starve and die. Starving someone is doing something that it is not as many will tell you — simply not doing something. If you don’t feed any living thing, you will kill it.

I learned about this issue firsthand in 1995 when Isuffered a catastrophic stoke. As you can see, the left side of my body is still partially paralyzed. I was once completely and totally paralyzed. I could not move at all. I could not even blink my eyes. Yet I was completely conscious, aware and able to feel pain. I had no way to communicate with anyone. I know what it is like to be hooked up to respirators, to be fed by a feeding tube –- and I know what it is like to have your feeding tube turned off for eight days.

One night I was fit and healthy. A 33-year-old mother of two small toddlers with everything to live for; the next morning I was totally paralyzed. According to the doctors, I had less than one in a million chances to survive.

Ten years ago, before this happened to me, I thought I was pretty clear about what I would want if I ever suffered a catastrophic injury or illness. I was sure that I would rather die rather than be a burden to anyone. I wanted no heroic measures taken when my time came. Of course I never expected my time to come so soon. But for me it came at age 33. As I hung on to life, for dear life, I realized how little we know about things until we have been there ourselves. We don’t know what it will be like, or what we will want, until it happens to us. When I found myself in that condition, I knew that I wanted to live. As I laid there in my hospital bed listening to the doctor’s talk about my impending death and their plans not to treat me, I can assure you that my idea of what the right thing to do for an incapacitated person had drastically changed.

Let me tell you what it is like to be aware of what is going on but have to rely upon others to speak for you. When they inserted a feeding tube into my stomach, thinking I could not feel. I felt everything, but I could do nothing. I felt everything they were doing, every cut, every second. I was totally locked into my body, unable to speak, unable to move any muscle in my body. I was on life support and receiving all my food through a tube, that at one point in time was turned off for eight days and I suffered all the pains and agonies of starvation. I was in excruciating pain, in silence. I was on the inside screaming out; I DO NOT WANT TO DIE. DON’T STARVE ME. I WANT TO LIVE, FEED ME SOMETHING.

And if you asked me today if it was worth going through everything I went through to live, I would say without a doubt, and without hesitation, “Yes!”

As a disabled person my life is as important as any life. My children love me as much as any children love their parents; my husband loves me as much as when I had the full use of two good arms and two good legs.

When I waged my fight to get treatment, the way life was viewed in this country was a potent weapon in my husband’s fight to save me. It would not be so today.

In 1995 you just didn’t do your best to speed up death. You just didn’t starve people to death assuming that was a painless death. Today people do. Today courts back up selfish disregard for human life with court orders that terminate life. The courts do not even require evidence proving the issues of life and death beyond a reasonable doubt. You can take a life if the persons life is deemed by so-called experts to be not worth living. Courts are even willing to end lives based upon pure hearsay evidence presented by people who may have good intentions or bad intentions, but nonetheless are human and fallible. This is done all the time to the disabled and the weak.

Then tell me of one case when this legislature or any courts of this land would allow you to starve to death an able-bodied male or female, yet that is just what was done in America day after day. It must stop; it is wrong. If I am wrong, then explain it to me or to the other millions of disabled people in America who, I might add, do vote.

Never again allow judges the sole and unbridled discretion to make these kinds of decisions. Give the courts clear direction forcing them to error always on the side of life, remembering that one you starve someone you can never fix the mistake. We are not asking for special rights. Disabled people don’t want to be treated as special human beings. They just want to be treated as human beings.

Face the truth that starvation is cruel and painful to inflict on another human being. Face the truth that what we do for the least of our people, for the weak and infirm, for those who cannot speak for themselves marks us and defines who we are as a society.

If in your wisdom, you want to take on the role of God and you want to presume to be able to dictate death to your disabled citizens then at least have the courage to admit what you are doing. Admit that in cutting off food and water from someone, you are assisting a suicide through painful and cruel means.

I wonder, would any of you pass an assisted suicide bill that directed the doctor to help take a life by inflicting a slow painful death that would take sometimes up to two weeks to occur? I doubt it, but that’s exactly what the law is doing in allowing doctors to disconnect people from their feeding tubes.

Please stand up for those who need you and I urge passage of this bill in order to protect the future victims. Please join me.