.- In many ways, Kari Ann Lucas is living the American Dream. She runs a law practice, has four kids, and is involved in her community.
Lucas also has a progressive neuro-muscular disease and relies on a ventilator for breathing.
“Without the medical equipment, my life expectancy is measured in hours,” she said. “Not days, not weeks, not months.”
Regardless, Lucas believes, “I have a good life.”
That’s why Lucas is alarmed by the recently proposed “Colorado Death with Dignity Act” introduced to the state’s House of Representatives earlier in the week. This bill, HB 1135, would allow physicians to prescribe deadly pharmaceuticals to terminally ill patients in order to end their lives.
Lucas serves on the Board of Directors for Not Dead Yet, a national grassroots disability rights group that opposes legalization of assisted suicide and euthanasia. She also often represents parents of children with disabilities in the courtroom. Lucas believes HB 1135 would gravely endanger the disability community.
If Lucas becomes depressed at some point in her life, she’d like to think she could go to the doctor for help. If HB 1135 were law, however, Lucas’ technically terminal diagnosis means that instead of suicide prevention, her doctor could write her a prescription to end her life without screening her for depression.
“If you didn’t have [terminal] disability, then you get suicide prevention,” she said. “But for anybody that could say that you’re terminal within six months, which encompasses a great number of people with severe disabilities, suicide is offered.”
Julie Reifkin, executive director of the Colorado Cross-Disability Coalition, is equally concerned. Her group, which does not weigh in on the morality of physician-assisted suicide, was approached by lawmakers lobbying for HB 1135. They asked the board of directors what safeguards they could put in place to make the bill acceptable to them.
“Our board of directors decided … that there is no way to have enough safeguards to not make this a disaster and very, very dangerous for people with disabilities,” Reifkin said. “There’s just no way to make it ok.”
Like Lucas, the coalition has worked with many people who were once given a “terminal” diagnosis, and then went on to enjoy 20 or more years of life.
“Terminal isn’t always terminal,” she said.
It is normal for people to be initially depressed upon receiving a terminal diagnosis, Reifkin said. But the vast majority of people end up adjusting, and get more out of life with a disability than they ever thought they could.
“People say, ‘I couldn’t stand it if I couldn’t … go to the bathroom myself or take a shower or dress myself,’ and anyone who is non-disabled feels that way,” she said. “And then you acquire a disability and you deal with it, most people deal with it.”
She’s also concerned that the bill does not require doctors to screen for mental health issues before writing the lethal prescription.
“We asked (lawmakers): shouldn’t everyone see a psychiatrist, get mental health care, or get an assessment to make sure you’re not doing this out of depression?” she said.
“We’re told…we just don’t have enough psychiatrists out there to do that. And that’s true.”
“But that’s pretty scary to me,” she said. “When someone is depressed and they say they’re going to end their life, we intervene and we give them help, sometimes against their will even. We don’t say as a society that it’s ok to kill yourself if you’re depressed about something; we say if you’re feeling that way then you need help. And so why is this different?”
Another disturbing part of this bill, Lucas said, is that the lethal prescription is picked up at a pharmacy and taken home by the patient to take themselves. There is no requirement for a doctor to be present, no way to stop the pills from changing hands, and a wide margin for error.
“There’s not a mandatory system for addressing control of these prescriptions, nor what happens when they’re not used,” she said. “So there’s nothing preventing, say, grandpa’s grandson who just broke up with his girlfriend from raiding the medicine cabinet and getting a hold of the prescription and committing suicide.”
“We’ve seen that happen in Oregon where the drugs have changed hands, so those are all grave concerns to the disability community.”
Reifkin added that the end of life can be a stressful time for an entire family, which could create undue pressure on the ill person to kill themselves and relieve their families.
“Who’s to say that you might have changed your mind, but a family member who stands to inherit isn’t going to grind them up in your applesauce?” she said.
“I don’t think there’s this big evil conspiracy to knock off dying people, I’m not saying that, but I’m just saying that situations that are stressful don’t always bring out the best in people, so why are we putting (lethal prescriptions) out there?”
Not only would the act discriminate against the disabled and the dying, but it would also discriminate against people with low incomes, Lucas noted.
Reifkin also expressed concern for lower-income folks on Medicaid, and said she doesn’t want to see what’s happened in Oregon come to pass in Colorado.
“Whenever times are rough on Medicaid, they always look at those of us who are expensive to keep alive, and that’s scary.”
Disability groups in the United States are also looking to Europe, where physician-assisted suicide has been legal in most countries for years, to see how blurred the lines can become, and how dangerous life for the disabled is in those countries.
“They’ve moved from a system of assisted suicide to involuntary euthanasia, where someone else is making the decision to kill somebody because the value of a disabled life is so low,” Lucas said. “There are even instances where parents are choosing to kill their disabled children.”
Both Lucas and Reifkin said they believe that hospice and palliative care are under-utilized end-of-life options that render the option of physician-assisted suicide unnecessary.
“Nobody wants to suffer, no one wants to watch their loved ones suffer in pain at the time of death,” Lucas said. “That’s why in every state in this country people can receive palliative sedation … at whatever level of medication is necessary to relieve their pain. Even if that level ends up rendering them unconscious and hastens their death, then that is absolutely permitted under the law in every state in the country.”
Reifkin said that if Colorado governor John Hickenlooper is so concerned about mistaken deaths from the death penalty that he has put all executions on hold, he should equally err on the side of caution when it comes to ‘Death with Dignity.’
“We don’t need to have the government involved in ending people’s lives, and that’s the issue,” she said.
“We need to be erring on the side of life, not erring on the side of death.”
HB 1135 will go to committee on Friday, Feb. 6. If the bill makes it out of committee, it will move on to a vote on the House floor.