Will Evanston lead the way to bring Medical Aid in Dying legislation to Illinois?
If you're an adult with a terminal illness and you’re facing unrelenting pain and suffering at the end of your life, nine states and the District of Columbia have laws on the books allowing you--if you choose--to take a prescribed lethal dose of medication and die peacefully in your sleep. The process is known as 'medical aid In dying.'
Though polls show that 70 percent of Americans favor such a law, only Oregon, Washington, California, Vermont, Montana, Colorado, Hawaii, Maine, New Jersey, and DC have enacted one.
Evanston activists Fay Clayton and Oliver A. Ruff -- and 3rd ward Alderwoman Melissa Wynne--hope Illinois will be next.
At the next City Council meeting on October 28, Ald. Wynne will introduce a resolution asking the City of Evanston to urge the Illinois Legislature to enact such legislation.
If the Council passes it, the resolution will be delivered to the Illinois General Assembly and Evanston could be instrumental in mobilizing other communities locally and across the state to support the law so that Illinois residents will also benefit from this end-of-life option.
The law, as in other states, would provide the medical-aid-in-dying option to:
-- adults who have been diagnosed with a terminal disease,
--who have six months or less to live,
--who are mentally competent to make a medical decision, and
-- who are able to administer the medication themselves.
I recently sat down with Clayton and Ruff, both of whom volunteer with an organization called Compassion & Choices, and both of whom are members of its Evanston action team, along with State Senator Laura Fine, State Rep. Robyn Gabel, and several dozen other Evanston residents.
We talked about medical aid in dying--what it is, what it isn't, why they care, and why we should--and what Evanston's got to do with it.
"We're just hoping we can have this option because it's compassionate and humane, but no-one *has* to pick it," Clayton explained during our interview. "And each one of the laws provides that only the patient can administer it."
You can watch the whole interview below; following are some highlights.
I began by asking how the two got involved in this issue.
"I think my passion came from my parents, both of whom died in hospice," Clayton, a retired attorney who has been working on this issue for more than five years, tells me.
"Hospice is wonderful, but it doesn't go far enough. My dad chose not to take antibiotics when he had pneumonia and he would have liked to say goodbye a little quicker, I think. And for myself, if I have the option at the end of my life when I'm terminally ill, I think I'd like to go out on a more peaceful, happy note."
Ruff, a retired educator and an activist for racial equity in Evanston, agrees.
"All of us have had relatives, I'm sure, that have gone through this, and it's traumatic to see that. We don't want to see that for our relatives and we don't want to see that for ourselves," he says. "This is something where patients determine what direction they want to go to help them remove the unbearable misery and suffering that they may be having at the end of life."
Clayton and Ruff say that as they push to get this legislation passed in Illinois, their main goal right now is public education, because there are still misconceptions about the law.
"A lot of people, when you say 'medical aid in dying,' they've never heard of it or they don't understand it," Clayton says. "A lot of people are misinformed. They conflate it with suicide."
Ruff says he initially worried that medical aid in dying was physician-assisted suicide or euthanasia. "I had concerns at first. Was this a Dr. Kevorkian kind of thing?"
But each of the states that has provided for medical aid in dying around the country make it clear that it's not suicide. Choosing medical aid in dying doesn't affect your insurance, it doesn't affect any contracts.
"There's a stark difference between suicide and medical aid in dying," Clayton points out. "People who commit suicide have a choice between living and dying. People who use medical aid in dying don’t have a choice, they *are* dying. You're choosing not to suffer any longer, but you're dying from a terminal disease. And that's what the death certificate will say."
Another common misconception is that individuals could be coerced into taking the medication, but, Clayton says, that's not the case.
In fact, she explains, a patient has to go through a number of steps before they can receive the medication: the patients must request it orally and in writing; doctors must verify that there's no coercion; patients must administer the medication themselves; and there are many other stringent safeguards in place so that the process works as intended.
Ruff adds that in the 40 collective years this law has been on the books, there hasn't been a single substantiated accusation of abuse or coercion.
Interestingly, a third of the people who request and receive the medication do not take it; simply having the option can relieve their anxiety about experiencing pain at the end of their life.
"Just knowing it's there if their suffering becomes unbearable makes their last days and weeks more pleasant, less fearful. There's less anxiety," Clayton explains.
And, she adds, loved ones feel comforted too, knowing that if their mom or dad or spouse is in terrible pain they don't have to suffer every last second when it becomes intolerable.
"Some of the concerns people articulate are wrong," Clatyon says. "If they had the information, they would change their mind. That's why we're doing this public education."
The bottom line is that no-one is obliged to choose this path, but that they don't oppose it for anyone who does.
IS THIS A SOCIAL JUSTICE ISSUE?
Given the huge disparities in healthcare across race and socioeconomics in this country--and in Evanston--Clayton and Ruff say they're paying attention to ensuring information about medical aid in dying is available to everyone because, if passed, the option will be available to anyone. If the law is passed, Ruff says, medical aid in dying would be covered by insurance and by medicaid.
"And that's the equity issue," Ruff adds, pointing out that few African Americans are currently involved in the medical-aid-in-dying movement. Partly, he says, because of a lack of knowledge, a lack of information, and fear.
"One of my goals is to share with my fellow persons of color that this is something that ... it took me a while to get to this point and I feel very convinced and very compelled to share my story," he says. "Medical aid in dying is something that will prevent so many of us as African Americans ... when our parents and relatives have died, they've suffered. That's what's so crucial, that we're given options."
Some African Americans, says Ruff, are concerned that supporting this law goes against their religious beliefs.
"We're not saying we're going to coerce you in any way to promote anything you're not comfortable with," Ruff explains. "You can render a decision that's best for you. Every decision is a personal decision and we respect that, we honor that."
In the past, Ruff says, fear has prevented people from talking about end of life.
"As a person of color, we haven't really done that and I think now, because of this becoming more openly available, it allows us to make plans for our final days," he says.
With the resolution poised for introduction at City Council next Monday, Clayton and Ruff believe Evanston can inspire other communities to follow suit.
"Evanston is considered a very progressive community and Evanston has done a lot of innovative things," Ruff says. "If Evanston is in the position where the resolution is approved and it's submitted to Springfield, it provides impetus for other communities to consider this and to encourage their state legislators to approve it."
In other states, Clayton explains, when one city has a non-binding resolution asking the General Assembly to make the law available--and then another city and another follows suit--pretty soon the legislature passes it.
"I really hope we are the leader in our state," Clayton says. "I think it's what we'll need to get the legislators in Springfield aware of what an important alternative this is for people who would like to expand their choices at end of life and really spend their last days more on their own terms."
For more information: Click here and here.
--If you'd like to join the Evanston Action Team or have any questions, you can email Fay Clayton at email@example.com, or Oliver Ruff at firstname.lastname@example.org.