Right to die on your own terms? Illinois lawmakers propose medical aid in dying bill

Deb Robertson, a Lombard woman with a rare form of cancer, supports a proposed bill where a patient with six months or less to live could opt to take a prescribed medication to end his or her life.

Deb Robertson knows the state legislation she’s fighting for — to allow medical aid in dying — may not be enacted by the time she’s ready to die.

The bill, which was presented last week in the Senate and is awaiting committee assignment, would give terminally ill adults, like Robertson, an option in how they die. Under the proposed bill, a patient with six months or less to live could opt to take a prescribed medication to end his or her life.

Similar laws have passed in 10 other states, including Oregon, where voters backed the nation’s first measure in 1994. Robertson has spent the last two years of her life sharing her story to bring Illinoisans the same option.

“I’ve come to accept the fact that I might not be here when this does go through,” said Robertson, a former social worker who retired after being diagnosed with neuroendocrine cancer in 2022. “But I’m going to do everything I can while I’m here.”

The Lombard woman and other supporters of the measure are quick to note what they are championing is not suicide. It is something to give terminal patients and their loved ones peace in those final moments.

“This gives you the dignity to make that decision to have those final conversations with your loved ones and to go without fear and without great pain,” said state Sen. Linda Holmes, an Aurora Democrat, who introduced the bill last week with state Sen. Laura Fine, a Democrat from Glenview.

The proposed bill includes several requirements that must be met before a patient can obtain the medication.

Patients, for example, must express their desire to their attending physician and then to a consulting physician five days later. The request also must be made in writing.

The patient must be mentally capable of making the request. A family member cannot ask for it or coerce a loved one to take it. Doctors also must inform the patient of all end-of-life care options, including hospice and palliative care. The medication also must be self-administered, typically by mixing the compound in juice or water and drinking it.

“This is not euthanasia,” said Amy Sherman, Midwest advocacy director for Compassion & Choices Action Network.

According to data from the national advocacy group, of those who have opted for medical aid in dying, 88% already were in hospice care, and the majority who used medical aid in dying had some form of cancer. In the last 20 years, about 8,729 people have used medical aid in dying prescriptions. The group also notes only 63% of people with prescriptions ever use it.

“Terminally ill adults should be able to make their own health care decisions at the end of their life,” Sherman said. “These people are already dying ... this is an option for them to request to take a prescription and to die peacefully in their sleep.”

Opponents to the measure say there are other options to allow people to die with dignity and worry about where medical aid in dying measures can lead.

“We think there’s a better path for people who are in end-of-life situations and are faced with difficult decisions about the remaining months or years of their lives,” said Robert Gilligan, executive director for the Catholic Conference of Illinois, which also is a member of the coalition Stop Assisted Suicide Illinois.

He said Canada started with medical aid in dying, or MAID, laws for terminally ill patients. Since the initial federal legislation passed in 2016, Canada has expanded its laws to now include those who are seriously ill or incurable. Legislators recently delayed a measure to expand MAID laws to include mentally ill patients.

“This puts us on a slippery slope that we don’t think Illinois should go on at all,” Gilligan said.

Supporters stress medical aid for dying is a voluntary option and that those who don’t agree with it, don’t have to make use of it. They reiterate the measure would only be for the terminally ill with a prognosis of six months or less.

“The one word I’ve heard from other families is peaceful ... this would give their loved one a peaceful ending to their life,” Fine said.

Robertson knows how agonizing the cancer she has can be.

“I have watched 11 of my friends die ... and it was ugly,” said Robertson, who participates in a Zoom group that includes patients around the world with the same cancer.

And while she supports the bill, she freely says she does not want to die. But when the time comes, she wants the choice to be able to go peacefully and have her family remember her as an active adult who enjoyed life — not for what the cancer did to her.

“She has always said she doesn’t want to be bedridden and suffer,” Robertson’s wife, Kate Koubek said. “Selfishly, I would take every second with her ... but I don’t want to see her suffer.”

Though medical aid in dying would help Robertson end her life, she said it also would help her live now.

“If I had this option now for me, I could focus on right now, the here and now and not worry about when it comes time,” she said. “I would be able to plan better. I could set aside time ... to meet with my grandsons, my daughter, my son, my wife, my parents and talk to them .... and that, to me, would be a relief.”

Alicia Fabbre Daily Herald Media Group

Alicia Fabbre is a local journalist who contributes to the Daily Herald