SPRINGFIELD — A hearing on legislation that would allow terminally ill people to end their lives with the help of a physician was postponed Wednesday as lawmakers sought more time to refine the proposal, which advocates are again pushing after failing to get a version through the General Assembly last year.
The measure would legalize medical aid in dying, often referred to as physician-assisted suicide or medically-assisted death, allowing mentally competent, terminally ill adults the right to access life-ending prescription medication.
If a bill is passed this year and signed by Gov. JB Pritzker, Illinois would join 10 other states, among them Oregon, California, Colorado and Hawaii, as well as Washington, D.C., in allowing medical aid in dying.
The legislation, filed by state Sen. Linda Holmes, an Aurora Democrat, was pulled from the agenda of a Senate Executive Committee hearing as lawmakers sought to add at least one amendment. Details over how the bill would be changed were not clear.
The measure is opposed by disability rights advocates and the Catholic church, which say it could lead to discrimination, coercion and abuse. Some medical practitioners also are against it.
Holmes offers personal reasons for backing the measure, as both of her parents died of cancer, including her father when she was 15.
“It was horrific to watch a vibrant 6-foot man waste away to 90 pounds at the end of his life, and the suffering that was obvious and apparent was devastating,” Holmes said in an interview with the Tribune last month.
As written before Wednesday’s scheduled hearing, the legislation would be reserved for Illinois residents who are deemed to have six months or less to live. A doctor would be required to provide “sufficient information” to a patient for “all appropriate end-of-life care options, including comfort care, hospice care, palliative care, and pain control, as well as the foreseeable risks and benefits of each.”
A written request for the life-ending medication would have to be filled out by the patient and witnessed by at least two people “who attest that to the best of their knowledge and belief the patient has mental capacity, is acting voluntarily, and is not being coerced or unduly influenced to sign the request.” One of the witnesses cannot be a relative, someone entitled to their estate, a representative from the patient’s health care provider, their attending physician at the time of the signed request or, if applicable, their interpreter, under the bill.
If doctors have doubts over whether the patient has the mental capabilities to determine their fitness for end-of-life medication, they must refer the patient to a licensed mental health professional to assess their mental capability.
Holmes proposed an almost identical bill last year, but never called it for a committee hearing, saying her goal was merely to start discussions. This year, she said she will push the bill, saying it has garnered additional support from legislators and constituents. Among backers is the American Civil Liberties Union of Illinois.
“I would hear from people, and I’d be sitting in my office, fighting back tears, because you hear all these stories,” Holmes said in the interview. “I think it was important for me to hear them, just so I had a good understanding of what we were doing and how people were really feeling about this.”
Deborah Robertson testified during a legislative hearing on the bill last month that treatments for her rare and aggressive neuroendocrine carcinoma are limited. She said she’s watched others with her diagnosis “struggle in the pain … until they’ve taken their last breath,” and that she finds “a level of comfort” in dying on her own terms.
“I deserve options to enjoy the time I have left with my loved ones and friends, and not worry about how my death will occur,” Robertson said. “It’s the last bit of control I have.”
At a news conference Wednesday, Jules Good, who studies disability policy, spoke out against the legislation, noting that many disabilities can become terminal due to lack of access to appropriate care. They said there’s been a push for some doctors to reclassify treatable conditions, such as anorexia, as terminal in order to give their patients the option to pursue an end-of-life method.
“As someone in recovery from anorexia nervosa, which threatened my life and has permanently damaged my body, I cannot overstate how dangerous this is. When I was at my lowest, if a doctor had told me I could just end it all, I absolutely would have,” Good told reporters. “It is only through years of compassionate treatment, therapy and support that I’m able to stay up here today and say that I’m in recovery.”
“While the stated intent of this bill is to let people who are truly terminally ill to choose how, where and when to die, its impact would extend far beyond this population because of the systemic inequities of our health care system,” they said.
Another opponent, Sebastian Nalls, a health care and home and community-based services analyst, said medical aid in dying “provides another barrier and another hurdle” for these patients with disabilities.
“We see that the safeguards that are currently in place that there are no safeguards that would be adequate enough for people with disabilities,” he said Wednesday outside the Senate Executive Committee room.
