Deb Robertson’s advocacy leads to Illinois legalizing medically assisted dying

Deb Robertson closely watched the calendar, hoping to live long enough to see new Illinois legislation take effect that allows terminally ill people to end their lives using lethal medication.

A diagnosis of a rare, aggressive cancer ended her 30-year career supporting homeless youth. As her condition rapidly worsened, making her feel "like a walking time bomb," she found a new calling as a leading voice for end-of-life choices.

She shared her experience publicly and traveled from near Chicago to Springfield, the state capital, to persuade lawmakers to legalize medically assisted dying.

That moment arrived on Sept. 12. Robertson celebrated at home alongside friends and family as "Deb’s law" was enacted. Illinois became the first state in the Midwest, and the 13th state overall alongside the District of Columbia, to pass the measure.

"I believe that God gave me this extra time so that I could see this law through," said Robertson, 68. "I believe that people have the right to leave this Earth with dignity and on their own terms."

Medically assisted death for terminally ill patients has been legalized in numerous countries in recent years, with others weighing similar laws. In the U.S., Illinois and New York are the latest states to join this accelerating legislative push.

Opponents, including many religious groups, lawmakers and disability advocates, have moral objections to someone ending their life. Even with safeguards in place, some argue, the decision could be made for the wrong reasons.

“It puts people like myself — people with developmental and mental disabilities, as well as physical disabilities — in danger,” said Ebony Payne, a Chicago-based disability advocate who is quadriplegic. She was a plaintiff in a lawsuit against “Deb’s law,″ contending it discriminates against people with disabilities.

Even Pope Leo XIV weighed in, urging Gov. JB Pritzker not to sign the bill. Leo later said he was “very disappointed” that his home state of Illinois approved a law condemned by the Catholic Church. Polls show that most Americans think medical aid in dying is either morally acceptable or not a moral issue, although opinions vary across different faiths and political lines.

Dr. Jessica Kaan, medical director for End of Life Washington, an advocacy group, has helped hundreds of patients in Washington and Oregon with assisted dying.

Her mother, a practicing Christian, opposes it on religious grounds: “She’s horrified that I’m involved in any way.”

Kaan says she’s an advocate for choices. Her perspective is shaped by the types of deaths she has witnessed.

Among them are patients with ALS, a progressive disease that attacks nerve cells controlling muscles throughout the body. “It’s a particularly gruesome and awful way for most people to even anticipate their dying,” she said about a disease that takes away the body’s ability to move and speak.

For many terminally ill patients, she said, having the option gives them a sense of comfort, even if they eventually might not use it.

“I respect that people don’t want to choose that as an option for themselves. What I don’t love is for people trying to police that for other people.”

Peter Redgrove of San Diego, a late-stage bone marrow cancer and leukemia patient, used California’s assisted-dying law on Sunday. After 19 rounds of chemotherapy, he decided to set the terms of his death following a long, pain-wracked hospital stay.

“I see no point in enduring pain and suffering emotionally, psychologically and physically, when there are means to end it,” said Redgrove, 85, days before he took the lethal prescription cocktail in a cup emblazoned with Sylvester, his favorite character from the Looney Tunes. “I don’t think you get extra points for hanging in to the bitter end.”

Redgrove grew up in Catholic orphanages in England before moving to the U.S. Although he was no longer a practicing Catholic, he remained close to his faith, often wearing a crucifix he only gave away right before his death.

“An all-loving God is not going to punish me and throw me into a fire pit because I’m doing this,” Redgrove said in his room at a residential facility, where he spent his last days listening to classical music and reminding people to be kind.

With a death doula’s help, he invited loved ones to a celebration of his life that included Champagne, a shroud to wrap his body in his favorite royal purple and a final song: “Time” by The Alan Parsons Project.

Before he took his last breath, he read a Buddhist prayer.

Oregon was the first U.S. state to pass a medical aid-in-dying law; it took effect in 1997.

As other states followed suit, what remains generally consistent is that to use the laws, one must have an incurable illness and less than six months to live, said Thaddeus Pope, a bioethicist at Mitchell Hamline School of Law in St. Paul, Minnesota. To qualify, one must also be able to understand and make a voluntary decision and be able to take the prescribed medications without assistance.

The latest states to legalize medical aid in dying are among the most populous: New York, where it took effect in August, and Illinois earlier this month. Today, nearly 1/3 of Americans live in a state where that end-of-life option is legal — though the practice remains uncommon in the U.S., accounting for roughly 15,000 deaths since the Oregon law went into effect in 1997.

“We actually have a pretty significant track record now: 30 years in Oregon, 18 years in Washington, 10 years in California. … That’s a lot of experience,” Pope said.

Peg Sandeen, chief executive officer of the Death with Dignity National Center, a nonprofit advocacy group, said there’s clear evidence that the safeguards work. “Police are not chasing after cases where there’s been coercion. We don’t have physicians losing their license to practice. That’s not happening.”

Some faith traditions continue to condemn assisted dying — sometimes called assisted suicide. Illinois pastor Andy Huette, who leads a nondenominational church in Gridley, urged Christians to reject Deb’s law, calling it “legislating darkness.” He has supported congregants with ALS, cancer and other chronic illnesses, and understands the desire to reduce suffering, but he also believes in its “redemptive purposes.”

Others have changed positions. Rabbi Dvora E. Weisberg served on a Reform committee that spent more than two years interpreting Jewish texts and talking to doctors and families to draft a paper on medically assisted dying that reverses earlier guidance. The paper argued that Jewish law must respond to modern medicine’s ability to prolong dying and to new knowledge about pain.

“We take this very, very seriously even though we know that any Reform Jew can disagree with us. We’re not the Vatican, we don’t have that kind of power,” said Weisberg, a professor of Rabbinics at Hebrew Union College.

“But the response that we’ve gotten from people who have read it has been very positive in the sense that they feel that now they have something to think about that can help them.”

Before Deb’s law went into effect, a judge denied a request for a preliminary injunction in a lawsuit by Ebony Payne and disability groups that aimed to block the law, saying that they had not proved standing or imminent harm.

In her Chicago home, Payne used a mouth-operated stylus to look at the ruling on her phone while lying in a reclining medical care chair. “I’m very disappointed,” she said. “My hope is that the law will be taken off the books.”

The six Catholic dioceses in Illinois criticized the law, saying it puts the state “on a dangerous and heartbreaking path.” The pope, who grew up in Chicago, has cited Catholic teaching, which calls for the protection of life from conception until natural death, forbidding abortion and euthanasia.

Chicago’s archbishop, Cardinal Blase Cupich, and Springfield Bishop Thomas Paprocki challenged “Deb’s law” in separate lawsuits and won limited protections without blocking the law from being enacted.

“We live in a state now where suicide is now normalized, and yet we still have a suicide hotline. There seems to be a bit of schizophrenia here,” Cupich told The Associated Press.

In the days before the law took effect, a judge temporarily blocked the state from enforcing the law on Catholic groups that challenged it in a lawsuit. They had argued the law could compel Catholic healthcare providers to refer or provide help against their faith in what they believe is assisted suicide.

“They always give it a euphemistic name: This is the End of Life Options Act. But it’s really just physician-assisted suicide, which is very problematic,” Paprocki said. “We believe that God is the author of life. … We shouldn’t be the ones deciding when to end our lives.”

Advocates, doctors and academics involved with the procedure say none of the medically assisted dying laws in the U.S. define the practice as assisted suicide. They note the American Association of Suicidology has declared that “suicide and Medical Assistance in Dying (MAID) are conceptually, medically, and legally different phenomena.”

Equating assisted dying with suicide is not only antiquated or misleading, but harmful, said Anita Hannig, a cultural anthropologist and author of “The Day I Die: The Untold Story of Assisted Dying in America.”

“In no way would I describe any of the deaths I attended as suicide,” said Hannig, who spent five years following patients, families and doctors while researching her book.

Terminally ill patients who have sought this type of legislation insist they’re not suicidal.

“It really bothers me because I want to live, I don’t want to die. But I’m going to. I have to accept that, my wife has to accept that, my family has to accept that,” Robertson said in Lombard, Illinois, where she lives with her wife, Kate. They’ve known each other for 45 years; framed images of their wedding and other milestones decorate their home.

They recently walked hand in hand to a park where they plan to plant a tree that will grow next to Deb’s ashes.

Enactment of the new law “really makes me feel safe and peaceful,″ Robertson said. “Each day that I go out there, I know that I’m going to have the choice at the end of my life to go out the way I want.”

“I didn’t choose to have this disease, but give me the choice — and other people who are terminally ill, the choice to have some control over their life.”