Illinois' medical aid in dying law takes effect tomorrow. Terminally ill adults across the state will have the legal option to request medication from a physician to end their lives.
In McLean County, it might not be that easy.
The region's two major hospital systems have either declined to participate in the new law or have not yet said where they stand. Local hospice and care providers have not responded to interview requests. The county coroner's office does not plan to weigh in.
In an email to WGLT, McLean County Coroner Kathleen Yoder said she wasn't interested in discussing the topic.
"As the McLean County Coroner, I will adhere to the law however it is written. My opinion on this matter will not change the law either way," Yoder said.
The law is formally named the End-of-Life Options for Terminally Ill Patients Act, or EOLA. It is more commonly referred to as medical aid in dying, or MAID. It is also called "Deb's Law," after Deb Robertson, a former social worker from Lombard with an aggressive neuroendocrine carcinoma who advocated for the bill.
Despite last-minute efforts to avoid its implementation, Illinois will be the first Midwestern state to legalize the practice. About a dozen other states and Washington, D.C., already allow it. Nearly a year after lawmakers passed the bill, hospitals, hospice organizations, coroners and physicians in McLean County are still working out what role, if any, they will play.
How it works
The law sets specific criteria for who qualifies. Geoff Sugerman, a political strategist with the Death with Dignity National Center who helped write the 1994 Oregon law that similar statutes are modeled on, outlined four requirements that appear in some form in every state's law, including Illinois'.
- The patient must have a terminal diagnosis with a prognosis of six months or less to live, confirmed independently by a second physician.
- The patient must have the mental capacity to make their own health care decisions. Patients with dementia or Alzheimer's do not qualify.
- The request must be voluntary. It requires two separate oral requests and one written request, witnessed by two people who know the patient.
- The patient must self-administer the medication. A physician cannot inject it.
"There is no doctor that injects anybody," Sugerman said. "In fact, euthanasia, mercy killing and lethal injection are outright outlawed in every single one of the laws, in every single one of the states."
A physician cannot be the one to raise the option first. Capitol News Illinois reported that attorneys defending the law in federal court said physicians may only discuss lethal medication with a terminally ill patient if the patient raises it, and that patients must be informed of hospice and pain-management alternatives before proceeding.
Khadine Bennett, director of advocacy and intergovernmental affairs with the American Civil Liberties Union of Illinois, worked on drafting the legislation. She said the law includes safeguards against coercion in either direction. A patient cannot be pressured into using the law, and cannot be denied it by a provider who disagrees with it personally.
"You can't coerce somebody into taking the medication, and you can't coerce somebody or push somebody to not take the medication," Bennett said. "You can't rule that somebody's ineligible because you don't agree with it."
If a second physician declines to sign off, Bennett said, it must be for a documented medical reason, such as a concern about mental capacity or a suspicion that depression rather than informed judgment is driving the request. It cannot be personal objection alone.
Providers who do not want to participate are covered under the state's Healthcare Right of Conscience Act, which requires them to transfer a patient's medical records within a reasonable time if asked, and to direct the patient to another provider rather than declining and going silent.
The law also states that using medical aid in dying cannot be used to void a life insurance policy, unlike suicide.
Nationally, Sugerman said, use of the law is limited. According to utilization reports from Compassion & Choices, a nonprofit that advocates for expanded end-of-life care, fewer than half a percent of deaths in states where it is legal are attributed to medical aid in dying each year, and about 90% of people who use it are already enrolled in hospice care.
Who’s participating
OSF HealthCare, one of two major hospital networks serving McLean County, opposed the legislation throughout the legislative process, according to Chris Manson, the health system's vice president of government relations. He said OSF submitted written opposition, lobbied lawmakers and testified in committee against the bill, and will not participate once the law takes effect.
"We opposed it from the very beginning," Manson said. "We've got a lot of concerns basically for our patients, how these people are going to be very vulnerable when they're seeking this."
Steve Mattern, OSF's senior vice president of mission services, said the health system's position is grounded in its status as a Catholic ministry governed by the church's Ethical and Religious Directives for Catholic Health Care. OSF will not provide or refer patients for what he described as "assisted suicide."
"For us to not engage or participate in euthanasia or assisted suicide, medical aid in the dying, as it's expressed here, that isn't new," Mattern said.
Dr. Dawn Lemert, OSF's managing medical director for palliative and hospice care, said patients who raise the option will be directed toward a conversation about what is driving the request — physical pain, emotional distress or fear of being a burden to family — and toward OSF's own palliative and hospice services. OSF said it will not block a patient who wants to pursue medical aid in dying elsewhere.
"If anyone asks for their medication or for their records to be transferred, if that's fittingly and properly engaged, that can be done," Mattern said. "We don't own their records."
Carle Health spokesperson Lisa Slater said a solidified opinion on the ruling would be forthcoming, but offered the following statement for now: "With the ruling now issued, we will first share our decision internally. We recognize that end-of-life decisions are deeply personal and emotionally complex, and we are approaching this matter with care and respect for our patients, families, and clinicians."
Hopedale Medical Complex, a health service provider in the neighboring Tazewell County, did not respond to requests for comment on where it stands.
In an email to WGLT, Brenda Yanosik, director of operations for Generation Healthcare, which operates Carriage Crossing, a senior living community in McLean County, said the company does not have enough experience with the law to comment.
"Though we are aware of this new bill, we have not had any experience with a resident wanting to pursue this option," Yanosik said. "So, we are not in a position to comment or recommend a family for you to discuss."
Help is hard to find
Catherine Durkin Robinson is a Chicago-based death doula who supported the legislation as a member of Compassion & Choices. She said she is having trouble building a referral network ahead of the new law taking effect.
Death doulas typically work alongside physicians and hospice staff, providing bedside support to patients and families.
"There are some places where the doula makes the medicine because the person doesn't want to; the loved ones don't want to," Robinson said.
"I am very concerned about access," Robinson said. "It remains to be seen what hospice organizations are going to support this, what physicians are going to support this, what compound pharmacies are available. I'm actually in this realm, and I find it very difficult to navigate."
She said two hospice organizations she has contacted have agreed to support patients seeking medical aid in dying, two have declined and roughly half a dozen have not returned her calls.
She said the Academy of Aid-in-Dying Medicine, which connects clinicians willing to serve as attending or prescribing physicians, is the one organization that has consistently followed through for her.
"I don't think it's going to be accessible for everybody for quite some time," Robinson said.
Asked what a McLean County patient should do given limited options, Robinson did not have a specific answer.
"I don't know," she said. "I think it's going to take a lot of work for anybody in this realm."
Bennett, of the ACLU, said the same access gap exists statewide and is not unique to this law.
"We've seen examples of religious entities and non-religious entities that end up buying hospitals, and then we see different services are shuttered," Bennett said. "I do think that because this is an end-of-life option that healthcare providers can choose to do or choose not to do, it could result in certain communities... that they may be impacted."
Bennett said Compassion & Choices' national hotline is one resource for patients trying to find a provider, and advocacy groups are working informally to compile a list of participating physicians and hospice facilities in Illinois.
Sugerman said patients do not need a hospital's or hospice's approval to use the law — only a willing physician.
"You don't need a hospital's approval or a hospice approval to do this," Sugerman said.
He said oncologists and other specialists in terminal illness have participated in other states even where large institutions opted out. He said rural areas see more friction than urban ones because there are fewer specialists available.
"It's more in rural areas where there are a much more limited number of people who specialize in treating terminal diseases," Sugerman said.
Cause of death unclear
Not everyone raising objections to the law is doing so on religious grounds. Peoria County Coroner Jamie Harwood said the Illinois Coroners and Medical Examiners Association does not take a position on the underlying right-to-die question.
"If people want to take their life or not take their life, that's their business," Harwood said.
His objection is to how the law requires deaths to be recorded.
Under the law, a death from medical aid in dying is recorded with the patient's underlying terminal illness as the cause of death, and the manner of death as natural. Harwood wants the medication and the manner of death recorded instead.
"In this case, it would be a multi-drug intoxication, and the manner of death would be a suicide," Harwood said.
Harwood said his office will not be notified that a medical aid in dying death has occurred, unless it involves a cremation permit, a death at home or a death in a vehicle. He said the law creates a lack of oversight otherwise provided by the coroner’s office.
“That's our job in the county, in the state, is being the curators of death in the county to make sure everyone's getting a medical legal death investigation, and there is oversight over that process and that death itself,” Harwood said. “That takes it completely away.”
Harwood also raised concerns about data: He said if these deaths are recorded as natural, county-level statistics on suicide and unnatural deaths become less accurate over time.
“It also disrupts and changes the epidemiology of our community regarding suicide deaths and regarding unnatural deaths in the county,” Harwood said. “It will change the statistical reporting of that.”
Sugerman and Bennett both disagree with Harwood.
They said the practice is consistent with how every other medical aid in dying state records these deaths, and that the terminal diagnosis, not the medication, is the underlying cause of death.
Bennett compared it to a cancer patient who stops chemotherapy; the death certificate lists the cancer, not the discontinued treatment.
"That person is terminal because of that underlying illness," Bennett said, "and that should be the thing that is on that person's death certificate."
Harwood said his office has not received any state guidance or training ahead of the law taking effect.
"We're told to follow the law or be held in contempt," he said.
'Assisted suicide' or 'MAID'
Supporters of the law, including Sugerman, Bennett and Robinson, use the term "medical aid in dying" and reject "assisted suicide" and "euthanasia" as inaccurate. Their argument is based on the six-month terminal prognosis requirement; patients using the law are not choosing between living and dying, since that outcome is already determined by their disease.
"They are not making a choice between life and death," Robinson said. "They are simply taking some control over the manner in which they die."
Bennett made a similar point.
She offered an analogy to explain the distinction. She compared it to a cancer patient who decides to stop chemotherapy partway through treatment.
"There isn't a notation in your death certificate that says died because she, you know, stopped taking chemotherapy," Bennett said. "My death is caused by my terminal illness to cancer, and I think the same thing applies here."
In her framing, a patient using medical aid in dying isn't causing their own death any more than a patient who stops treatment is — the underlying illness is what kills them either way.
OSF uses "assisted suicide," which aligns with its religious opposition to the practice. Mattern referred to the law as covering "euthanasia or assisted suicide, medical aid in the dying," using the terms interchangeably.
Harwood used "assisted suicide" and "suicide" when describing how he believes the law's deaths should be documented.
Supporters of the law generally use "medical aid in dying," while opponents, including religious groups like the Catholic Conference of Illinois, generally use "assisted suicide."
What's still pending
On Thursday, U.S. District Judge John Tharp denied a motion for a preliminary injunction that sought to block EOLA from taking effect Saturday, rejecting arguments from disabled plaintiffs, disability rights organizations and a physician that the law violates federal disability protections including the Americans With Disabilities Act.
Tharp found the plaintiffs hadn't shown a concrete, imminent injury, pointing to the law's provisions that no healthcare professional is required to provide aid-in-dying care and that only "willing healthcare professionals" may participate. Given that discretion, he wrote, the plaintiffs "cannot establish an immediate, imminent risk that all doctors will start inviting disabled patients to consider medical aid in dying."
As part of Thursday's ruling, Tharp dropped Gov. JB Pritzker as a defendant and gave the plaintiffs 30 days to show cause why the case shouldn't be dismissed entirely for lack of standing.
That leaves two other suits still pending: a temporary restraining order exempting religiously affiliated health systems and doctors from having to discuss the law with patients until the federal courts rule on a related abortion-referral case, and a separate suit brought by Cardinal Blase Cupich, the Carmelite Sisters for the Aged and Infirm, the Little Sisters of the Poor and a North Central Illinois pharmacist, which raises similar religious-objection claims.
With the disability-rights challenge cleared for now, EOLA is set to take effect Saturday as scheduled.
