We have uploaded a podcast of each of the disability community members who testified against HB-1135.
First up is Carrie Ann Lucas.
Rough transcript is as follows:
Testimony in Opposition of HB 1135
Presented before the Colorado House Public Health Care and Human Services Committee Public Hearing
Friday, February 6, 2015
Lucas: I want to point out preliminarily that I have some written testimony of people who could not be here today.
Primavera: Ms. Lucas, can you begin by stating your name, and who you represent.
Lucas: My name is Carrie Ann Lucas. I am here today on behalf of Not Dead Yet and the Center for Rights of Parents with Disabilities.
I just handed the legislative aide written testimony from Robin Stephens, Renee Walbert, Cara Jean Reimann, Robin Bolduc and Bruce Goguen, Stephen Mendelson, and Menda Warne. These are people who could not be here today, but who have written testimony in opposition to the bill.
Primavera: Thank you, please proceed. If you could make the microphone really close to your mouth, that would be great.
Lucas: I am 43 years old, and I live in and work in Windsor. I am a disabled woman, a mother, an attorney and I am a business owner. I am a parent to four adopted children with disabilities, two of whom are dependent on medical technology to live. I and the organizations I represent are opposed to HB 1135.
I am a person with multiple disabilities. I have a progressive neuromuscular disease that has caused me to lose muscle function throughout my entire body. I have weakness in every muscle in my body, including my facial and eye muscles. My organs are affected, I have low vision, and I am very hard of hearing. I have a gastrostomy tube, and I am dependent on a ventilator to breathe. Without my ventilator, I don’t have years to live. I don’t have 6 months, 6 weeks, or 6 days, I would only have hours to live. I have a terminal condition – very much like ALS, and I would be covered by this bill. I understand the sponsors have said this bill is not for the disabled, but respectfully Ms. Ginal, this is you are incorrect. This is about many many people with disabilities.
I am afraid if I were to become depressed, either situational depression, or major depression, and this bill passes, I could go to my doctor and ask for a lethal prescription. Because I have a disability, and because physicians are terrible at evaluating quality of life of people with disabilities, I would likely be given that lethal prescription, rather than be referred for mental health treatment. There is no requirement that I go to the doctor who knows me best, I am a smart woman, I would go to the doctors who devalue me the most. And they would probably give me that lethal prescription instead of referring me to the mental health treatment I would so desperately need. There is no requirement that doctors refer me to mental health treatment.
A woman in my situation but without my disabilities would not get a lethal prescription, and would most likely encounter a vigorous effort to ensure she did not take her life. And that is disability discrimination.
Webster’s defines suicide as action of killing oneself intentionally. That is what this is. Language should be honest. The title of the bill is highly offensive. It suggests my family and friends who have passed were undignified because they did not choose suicide. It suggests that those who rely on attendant care to assist with personal care are undignified. Why do some people equate needing help with bodily functions to a loss of dignity? We are not a nation of middle schoolers. The fact we need help, that society says if you need help that you would literally rather die of embarrassment than utilize assistance means we have something seriously wrong with society.
Primavera: Are you through with your testimony?
Lucas: I have a little bit more
Primavera: That’s fine
Lucas: I am expensive to keep alive. I understand that. I have had to fight to ensure that I have access to attendant care to live in the community. I have had to fight insurance denials that refused to pay for my ventilator and other equipment necessary to live. I have had to fight efforts to place a do not resuscitate order in my medical file. In a profit driven healthcare system, just as happened to Barbara Wagner and Randy Stroup in Oregon, people will die needlessly when insurance companies refuse to pay for necessary medications and treatment, and instead offer to pay for a much cheaper lethal prescription.
I do not want to die, I am not ready to die. I do not want to be driven towards death by a system that devalues my life. I have a lot of living to do. I have four kids who depend on me being alive. I have dozens of clients who rely on me as their lawyer. This bill affects me and my community, and I ask that you vote against this bill.
Primavera: Thank you. Are there any questions for Ms. Lucas? Are you representing those other people on the list?
Lucas: No, there is testimony. I passed out testimony from each of those to the legislative aide.
Primavera: Ok, she is busy up here collating, Let people know we will add that as part of the record here today. Ms. Lucas, I had one question. On page 12, and I don’t know if you have a copy of the bill in front of you, on line 16, it talks about how the attending physician will refer the individual for counseling, and you mentioned mental health, and I wasn’t sure if you saw that in the bill and if you don’t believe that takes care of your concerns, or if you would rather see it strengthened to say something more like mental health?
Lucas: Doctors who are attending physicians are not necessarily trained in assessing psychiatric conditions. They might be able to do a simple assessment, but the problem is physicians very much devalue in general, people with disabilities’ lives. When studies have been done looking at what physicians have said, physicians will say they rate quality of life for quadriplegics being very very low. The people themselves are being, when they are asked what their quality of life, it looks like the quality of live of people without disabilities. Some people think they have a fabulous life, some people think they have a horrible life, most people are somewhere in the middle, just like the typical population. So because doctors devalue our lives, they are going to immediately think, “of course you want to die.” I am a smart person, I would say the right things. I would say all the things that would cause a doctor to believe me. Because I know what their biases are, and I wouldn’t be referred to mental health treatment. Instead, if it were required, everybody has to be assessed, then that could be ruled out. But that doesn’t happen in this bill.
Primavera: Thank you. Rep. Landgraf?
Landgraf: Thank you madam chair, and thank you very much for coming, I am very happy you celebrate your life. I wanted to see if you could tell us about Barbara Wagner, the case in Oregon?
Primavera: Rep Landgraf, can you make sure when you speak, that you are really close to the microphone. Did everybody understand her question? Okay, Ms. Lucas?
Lucas: Barbara Wagner was a woman with advanced breast cancer in Oregon. Her doctors prescribed a particular regimen of chemotherapy. It was not likely to cure her breast cancer, but it was expected to, to extend her life. The Oregon Health Plan, which is what Medicaid is called in Oregon, told her, no they would not pay for that chemotherapy, and instead, they offered a number of options, hospice, and the other option was to pay for a lethal prescription. So instead of continued help to live, she was told they would help her to die. And that is really our concern. I have an article about Barbara Wagner, and Randy Stroup. I can distribute those. Randy Stroup was an individual who had prostate cancer who had a similar experience. Doctor prescribed chemotherapy, but treatment was not being covered by the Oregon State Plan, and instead a lethal prescription was offered.
Primavera: Rep. Landgraf Oh, they turned the volume up. I am not speaking louder. Does that help? Good. Rep. Landgraf?
Landgraf:. Thank you for that. Do you see anything in this bill that would keep that from happening, are there any safeguards?
Primavera: Ms. Lucas
Lucas: Nothing in the bill would prevent that from happening, and that is a concern. This is where if people are not being directly coerced, the economic realities of a health care system that is so driven by economics and profit means that people will be pushed toward suicide. They will have no other options. That really is what is so concerning about this bill, and it does nothing to fix that situation.
Primavera: Rep. Landgraf?
Landgraf: Thank you madam chair. One last question. You said you have two children who are dependent on assistance. And I am wondering if your children are of age, and I’m sure they aren’t at this point, but if they were of age to qualify for this. Can you see a scenario where you could possibly manipulate them into taking this route?
Primavera: Ms. Lucas
Lucas: One of my children is of age. She is 24 years old. She’s deaf-blind. She doesn’t use standard sign language, It would be very easy for someone to manipulate her. The way this bill is written is it allows people to help, assist with communication who are known to the person, and that would make it easy to be manipulated. For both of my children. My oldest daughter has a genetic disorder and is reliant on a gastrostomy tube. She cannot swallow or eat, so it would be very easy to manipulate her. My other daughter has cerebral palsy, also reliant on a gastrostomy tube to live. Her speech is difficult to understand. She too would be easy to manipulate if she were of age as well.
Primavera: Thank you. Okay, Rep. Everett?
Everett: Thank you madam chair. Thank you Ms. Lucas for coming down today. Isn’t this bill necessary to manage end of life pain?
Primavera: Ms. Lucas
Lucas: It’s not. It really isn’t. Every person in this country, every person in Colorado, who is in intractable pain, can receive palliative sedation. It allows people to say goodbye to their family, have those final moment, receive sedation at whatever dose is needed to alleviate their pain. If that means they are sedated, and that medication slows their breathing, and hastens their death, that is still permitted under the terms of a Supreme Court decision. That is permitted and available to people. People don’t always have access to that, we need to improve access to palliative care, we need to improve access to hospice. But this bill doesn’t do that. This bill will do just the opposite. It provides no incentive to improve end of life care.
Primavera: Thank you. Rep. Everett?
Everett: Thank you Madam Chair, and one more question. Again, thank you for coming today Ms. Lucas. How do you know when a person takes the pill, they aren’t forced? I mean, what’s the protections there?
Primavera: Ms. Lucas. Sorry I have to call on you because people are listening. That way it gives control for this hearing. So please proceed.
Lucas: They don’t. There’s no way to know. There’s no requirement to have a disinterested party present at the death. There’s no requirement that a physician or medical professional be present at th death. So there’s no way to prevent someone from grinding up the pills or dumping the 90 pills applesauce and feeding it to grandma. You don’t know if she changed her mind. And that is really a concern.
Primavera: Rep. Landgraf?
Landgraf: Thank you madam chair. I want to go back to something Rep. Court said earlier. She mentioned how many of us have oxycontin, or other painkillers at home. I recently had my hip replaced, so I was given pain killers. So I could take that medicine, and basically have the same result. So why in the world do we need this?
Primavera: Ms. Lucas
Lucas: We don’t need this. Everybody has the ability to commit suicide on their own. We don’t need to involve the government in doing this, we don’t need to involve the state in doing this. It requires people be able to self-administer the medications. So if you are able to self-administer the medications. We know people like Derek Humphry, who has written the Final Exit book. It will tell you exactly how to do it. It is the Anarchist’s Cookbook for suicide. It will tell you how to do it, without having this bill. If someone wants to do that, they can. The problem with this bill is it makes it sanctioned, and an option for insurance companies to say we will pay for this instead of paying for treatment. And it promotes death, and it will cause unneeded deaths in this state. That is the concern, and it really isn’t necessary.
Primavera: We are past our five minute timeline, and we do have other witnesses from the disability community. Ms. Lucas, we appreciate your testimony today.