Access Living’s Amber Smock Quoted Extensively In Chicago Tribune

Three days ago, Amber Smock, Vice President of Advocacy at Access Living, was quoted extensively in a Chicago Tribune article about Illinois’ assisted suicide bill. Today, the editorial board of the Tribune took a position opposed to the bill.

The March 5th article, “Should Illinois become a ‘right-to-die’ state? Lawmakers consider end-of-life option for terminally ill adults,” covered both sides. Here is the segment giving Access Living’s perspective as a disability rights organization:

Yet some disability rights advocates warn that the measure could put vulnerable populations at risk, including seniors, disabled folks and people with mental health issues.

“An option that’s meaningful for a few will create a lot of problems for a lot more people,” Amber Smock, vice president of advocacy for Access Living, a Chicago-based disability service nonprofit said during an interview with the Tribune. “There are safeguards but they won’t protect everyone from unintended consequences from this particular bill.” 

Folks with disabilities often face discrimination and bias in health care, and they are already at risk of criminal neglect or abuse, Smock said.

She worries that patients could be steered or coerced into ending their lives, particularly by insurance companies, who she fears might view physician-assisted suicide as a cheaper alternative to more expensive treatments or care.

“There is simply almost no way to ensure that a person with a disability who asks for (medical aid in dying) is not somehow being coerced by family, their doctor, or insurance companies,” she said in a written statement. “Furthermore, existing (medical aid in dying) programs tend to set a high level of burden of proof on the patient to show that they have been coerced. (Medical aid in dying) supporters claim that there is no evidence that people are ‘steered’ or coerced; that’s because it’s hard to meaningfully report it.”

A National Council on Disability 2019 report on the nation’s medically assisted suicide laws said that “insurers have denied expensive, life-sustaining medical treatment, but offered to subsidize lethal drugs, potentially leading patients to hasten their own deaths.” 

The report also argues that misdiagnoses of terminal illness can scare patients into hastening death; while fear and depression often spur assisted suicide requests, “referral for psychological evaluation is extremely rare,” the National Council on Disability said at the time.

“As someone who has battled cancer and been given weeks to live and am still thriving years later, I know firsthand that well-intending doctors are often wrong,” Neil Romano, the National Council on Disability’s chairman at the time, said in a statement. “If assisted suicide is legal, lives will be lost due to mistakes, abuse, lack of information, or a lack of better options; no current or proposed safeguards can change that.” 

Smock added that Illinois residents already have other end-of-life options such as advance directives, filling out “do not resuscitate” forms and refusing medical treatment.

“In the future, Access Living will continue to oppose (medical aid in dying) as we believe that the ableism we experience in life will translate in discrimination in death,” she said in the statement. 

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The editorial board’s opinion piece was also balanced: ‘Right to die’ debate comes to Illinois. Both sides have merit, but we would vote no. In fact, both pieces gave more lines to proponents’ arguments. Nevertheless, they clearly found the concerns from the disability and patient perspective more compelling:

…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.