At the Editorial Board, we’re used to hearing from passionate advocates on both sides of an issue. Certainly, there are many subjects put before us that feel like matters of life and death, especially when war or gun violence is involved. Still, nothing fully prepared us for what we heard when talking to those on both sides of the rising movement calling for Illinois to join the 10 other states (and the District of Columbia) that allow terminally ill adults to choose when and how they want to end their own lives.
“I’m going to die, and I’m going to die soon,” cancer patient Deb Robertson told us in one of our sessions. Robertson, a courageous woman, was part of a group of advocates for the so-called End of Life Options Act, which would allow eligible patients the right to access life-ending prescription medication or, to put that another way, to get the benefit of suicide assisted by a physician. The so-called right-to-die debate, which is under consideration in the Illinois legislature, has picked up steam in recent years, much like the debate over abortion rights erupted with new vigor after the Supreme Court’s decision in 2022 to overturn Roe v. Wade. In these semiotically sophisticated times, even the name of the debate depends on which side you are on. Those who support it refer to a “right to die.” Those who oppose it prefer it be called “physician assisted suicide.”
Robertson is in the former group.
Robertson, a Lombard resident, was a youth social worker before she was diagnosed last year with terminal neuroendocrine carcinoma, an aggressive form of cancer. She retired from her job of counseling teens, she said, and now has become an activist for the right of the terminally ill to choose.
“How I’m going to die is what I’m concerned about,” she said, arguing that her ability to make that choice should be a fundamental human right for any terminally ill American.
End-of-life care has progressed in many ways for the better since the days when the shadowy figure of Dr. Jack Kevorkian earned the nickname “Dr. Death” with his portable euthanasia services. Kevorkian, who famously said that “dying is not a crime” and yet was himself convicted of second-degree murder in 1999, died in 2011. Between his being granted parole and his death, he was legally obligated not even to broach the subject, let alone continue to participate in the cause.
These days, the public knows more about, and has become far more supportive of, the advantages of hospice and palliative care. Broadly speaking, that’s treatment seeking not to cure a medical situation so much as provide relief from the pain and other symptoms of a serious illness, as well as to help patients cope with side effects. And, despite widely held concerns, the availability of palliative care does not always depend on whether your condition can be cured. In general, albeit with some exceptions, the end-of-life comforts available to most of us in the last months or weeks of our lives have greatly improved from what was offered to our family members and other loved ones in the past.
That said, palliative care may simply not be enough for some patients for whom pain can still persist. And, beyond even that, is the simple, fundamental desire of Americans, among other humans, to feel and be free even as our bodies fail. As Robertson put it, “It’s about me having the choice to be able to die the way I want to die.” She made a most persuasive case.
There are, however, many people on the other side of this issue. They don’t generally oppose palliative or hospice care or the right of people to die at home. But they draw the line at a doctor — sworn to protect human life — intentionally being part of causing it to end and thus being asked to carry that ethical burden. The matter is of particular concern to those who advocate for the disabled and worry about possibly unconscious physician bias.
Our attention was drawn to a Harvard study that surveyed doctors and found that 82.4% of those physicians believed that “people with significant disability have worse quality of life than non-disabled people.” The study also found that only 40.7% of physicians were “very confident” in their ability to provide equal quality care to patients with disabilities. In the minds of those who advocate for persons with disabilities, this kind of implicit bias could mean that doctors would be less rigorous in making sure that safeguards were followed and, yet more troubling, might even push disabled persons with serious illnesses in that direction.
On similar but related grounds, we were told of many worries that someone’s understandable desire not to be a burden on one’s family members might also lead them in the direction of physician assisted suicide.
So here’s an especially difficult ethical scenario to consider: Should a person seeking their own death so as not to be a burden be said to be making a personal choice protected by the law?
You might very reasonably answer in the affirmative, given the selflessness of some Illinoisans. But on the other hand, family situations vary greatly and the well-publicized availability of this option might lead people to end their lives for altruistic purposes when personal doubts remain. Especially with the potential encouragement of a medical professional.
For that reason, and others, we believe that Illinois should not pass this legislation and join the 11 jurisdictions (California, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon, Vermont and Washington) that have passed similar laws. We say this believing passionately in the value of palliative and hospice care and fully supporting family members and medical professionals who want to take an individual patient’s wishes into account and not artificially sustain life beyond what is clearly the point of no return. We know that many inspiring people in this field quietly find ways to ease us gently from this world when our time is up.
But with all due respect, and with the acknowledgement that this issue is one on which legislators should be allowed to debate and vote their own consciences without judgment, we think this matter best kept as it is now in our state.