In 2016, a man incarcerated at an Illinois prison signed a living will, stating he was of sound mind and did not want certain medical interventions to extend his life. But there was a problem. When he signed the do-not-resuscitate (DNR) order, he had a diagnosis of dementia and his signature was disorganized and illegible.

When the patient again signed a DNR document in 2019, even his signature had declined. He signed simply with an “X.” Medical records show that by that time he was “profoundly demented.” There is no known record that the prison attempted to reach out and consult with his family.

An independent monitor reviewed the case and wrote that the DNR “gave the impression that stopping further medical care was really the wish of the patient when, because of the patient’s dementia, it was likely the decision of the IDOC [Illinois Department of Corrections].”

In the years after he signed the DNR, a hospital repeatedly recommended the patient have help eating meals, but according to the monitor, there is no evidence he routinely received that help. He suffered significant weight loss and symptoms consistent with malnutrition and died in 2021.

A federal judge assigned the independent monitor to review medical records of people who died while incarcerated in the Illinois Department of Corrections, as part of a legal settlement in a lawsuit over poor medical care in the state’s prisons. The monitor reviewed the deaths of 25 patients and found myriad problems, including three cases with concerning DNRs.

He wrote patients signed DNRs or living wills “when they clearly were not of sound mind and could not willfully and voluntarily do so.” The monitor wrote that the department needs to change their policies, so people can not sign DNR papers, if they can’t give proper consent and an “independent party or family member needs to be the consenting party for persons with dementia.”

But nine months later, a prison spokesperson said they are still in the process of revising their medical policies, “including the requirement that a patient or their medical proxy be capable of consenting to DNR status for it to be valid.” The department would not answer questions about whether there was an investigation into how staff had obtained the DNRs.

Corrections officials said in federal court that the monitor’s report had “inaccurate conclusions.” However, officials would not tell WBEZ any specifics about what was inaccurate, citing pending litigation. The department also would not comment on any individual cases because of medical privacy concerns.

Jenny Vollen-Katz, executive director of the independent prison watchdog John Howard Association, said the department needs to ensure proper oversight of DNRs so “we can have a bit more faith that the process itself is more trustworthy.”

She said the issue is urgent as the Illinois prison population gets older and sicker.

“That means these problems are getting worse. They’re getting more pervasive, it’s affecting more people as time goes on, and that’s something we need to be very cognizant of and guarding against,” Vollen-Katz said.

An aging and ailing population

According to state data, around 6,500 people are categorized by the corrections department as elderly, which includes anyone over 50 years old — an admission of the early physical decline of people behind bars. Fifty of those people are over 80 years old and, according to department officials, close to 100 people are “sick and shut-in,” living in infirmaries.

Alan Mills, executive director of the Uptown People’s Law Center and a lawyer on the lawsuit over health care, said the aging and ailing population is fallout from the tough-on-crime era of the 1990s, which put more people behind bars for longer periods of time. But he says the department is not equipped to care for this population or provide end-of-life counseling.

“We don’t have anybody who sits down with somebody who’s beginning to deteriorate in health and say: ‘Okay, this is what’s going to happen to you. This is what we can do. How much of this do you want? How much of this don’t you want?’ And make an overall plan for the last couple of years of somebody’s life. Instead, we just let them deteriorate, essentially, without anybody paying attention,” Mills said.

Mills said the problem with DNRs is one symptom of the extremely poor medical care in Illinois prisons. The monitor noted that nearly 50% of medical positions were unfilled and records showed signs of abuse and neglect, including failure to provide sufficient hydration or nutrition.

In one case, a 72-year-old man with dementia was “housed in the equivalent of solitary confinement with expectations of caring for himself.” He lost 57 pounds in the course of about five months and died not long after. The monitor wrote that if prison staff provided better care he would have lived longer, but instead they left him alone in a cell where he became so malnourished he had a cardiac arrest. The monitor wrote: “This horrific death should result in an internal investigation as to how this type of death never occurs again.”

The report does not note the DNR status of the man but Mills said the profound lack of proper medical care creates a situation ripe for patients signing DNRs without proper consent. “I’m afraid that we’re just simply ignoring people and then justifying ignoring them by having them sign [a] DNR, after they are no longer competent,” Mills said.

“The system failed him”

After Malinda Filicsky’s dad, George Williams, died inside prison, she got a box of his belongings: books, a reading lamp, a television and a set of dominos. She said the objects reflected the slow routine kept behind bars, reading and watching Jeopardy at night.

Williams signed a DNR, even though his cancer was not end-stage. According to the monitor, Williams struggled with depression, but there is no documentation he received mental health services. Staff apparently stopped all care for him except minor issues once he signed. He died about five months later.

Filicsky believes in a person’s right to refuse medical care. But she said their family has a history of suicide, and she doesn’t believe her father got the therapy he should have had, especially before signing such an important document.

“He didn’t have someone looking out for his best interest,” Filicsky said.

Filicsky said no one reached out to the family until after her father’s death.

“The system failed him,” she said. “It’s like they treated him like he wasn’t a person with feelings, and he didn’t matter. And that’s really hard. 

Shannon Heffernan covers criminal justice for WBEZ. Follow her @shannon_h.