NCD letter to Illinois General Assembly regarding assisted suicide legislation
May 1, 2025
Dear Members of the Illinois General Assembly:
I am writing in my capacity as Vice Chair / Acting Chair of the National Council on Disability (NCD), an independent, bipartisan federal agency that advises Congress, the President, and his Administration on matters affecting the lives of people with disabilities – to draw your attention to findings in NCD’s 2019 federal study, The Danger of Assisted Suicide Laws, and its recommendations regarding existing and proposed assisted suicide laws pursued by states across the country. Based upon our research on this topic, which spans nearly thirty years, we advise state lawmakers not to legalize any form of assisted suicide or active euthanasia, whether called by those terms or others, but rather to pursue a strong healthcare system that includes long term services and supports for all people, including people with disabilities with and without terminal prognoses. 1
Given that disability is a natural part of the human experience that affects nearly every constituent family you have – be it a congenital disability of a family member, aging into disabilities, acquiring a disability in an accident or in military service – I encourage you and your staff to read our report in its entirety to better understand how assisted suicide legislation has specific dangers for your constituents with disabilities. However, in the interest of the legislature’s present focus and any forthcoming votes on this topic, I will briefly summarize a few of our key findings as to why we have consistently cautioned against legalizing assisted suicide.
First, although bills like HB 1328 / SB 9 are promoted as ways to assist in relieving suffering at the end of one’s life, our review of available data found that the top five reasons patients’ give for making assisted suicide requests do not include pain or fear of future pain – noteworthy given the prominent narrative of “need” for such laws on the basis of pain. The top five reasons given, which have remained consistent from the most recent year of reporting (2024), are: “loss of autonomy” (89 percent), “less able to engage in activities” (88 percent), “loss of dignity” (64 percent), “losing control of bodily functions” (47 percent), and “burden on family, friends/caregivers” (42 percent). 2
To those familiar with disability policy, these top reasons should resound like as unmet needs warranting an examination of existing policies and resources rather than rational reasons to end one’s life. That these options are available as boxes to check in the Oregon state reports indicates that these are viewed as acceptable reasons for people to seek assisted suicide, although each is a disability-related psychological expression that, from a policy perspective, can and should be addressed through health care and supports and services, just as if a person with a disability who is nonterminal had made the same expression. Legalizing assisted suicide removes the impetus to address policy concerns that these reasons suggest may exist.
Second, assisted suicide bills and laws contain provisions purporting to safeguard patients from problems and abuse, but NCD’s research shows that these provisions have been ineffective in safeguarding patients in a variety of ways, including:
- In states where assisted suicide is legal, insurers have denied expensive, life-sustaining medical treatment for those who seek to fight their illness or simply lengthen their lives but have offered to subsidize the lethal assisted suicide drugs, foreclosing choice and potentially leading to patients hastening their deaths.
- Misdiagnoses of terminal disease and/or of prognosis can also cause frightened patients to hasten their deaths. Many of NCD’s present and past Council Members could give personal accounts of this – having vastly outlived original prognoses given for their disabilities.
- People who experience depression are at increased risk of harm where assisted suicide is legal. Less than one percent of patients who requested assisted suicide, who were reported on in the last year of data from Oregon (2024), were referred for psychiatric evaluation to screen for depression 3 that may have been present at the time of their requests. Such an evaluation would be a commonsense standard of care.
- Assisted suicide laws apply the lowest legal culpability standard available to doctors, medical staff, and all other involved parties – that of a good faith belief that the law is being followed – which creates potential for abuse.
Third, with strict privacy and confidentiality provisions, assisted suicide laws heavily restrict the collection and analysis of data, which prevents meaningful oversight. Where assisted suicide is legal, states have no means of investigating mistakes or even reports of abuse. Another significant problem with the data collection is the secrecy created by a common provision in assisted suicide laws that requires that death certificates be falsified by physicians so that they do not show assisted suicide as the actual cause of death but rather the underlying disease or disability. In 2015 and 2019, that common provision in a Connecticut assisted suicide bill prompted that State’s Division of Criminal Justice to enter the debate. The Division asked the legislature to delete that provision because they noted that it “effectively mandates the falsification of death certificates under certain circumstances… The practical problem for the criminal justice system and the courts will be confronting a potential murder prosecution where the cause of death is not accurately reported on the death certificate.” 4
Fourth, despite the restricted data available, there is ample evidence that assisted suicide has been available to people whose illnesses did not result in death within six months. Data from Oregon shows that many people with a host of conditions that are not terminal if treated, nonetheless access the lethal drugs. The provision that a person be “terminal” only requires a doctor predict the person will die within 6 months. There is no requirement that a doctor consider mitigating measures of medical treatment on prognosis.
Many conditions will or may become terminal if treatments are foregone – e.g. blood thinners, insulin, pacemakers, CPAP – which makes the concept of “terminal” far murkier and includes a host of diseases and conditions most people would not consider terminal. Oregon state data shows the truth of this concern as for years, people with highly treatable disabilities are listed among those who qualified for and died under the law. 2021 is the last year that Oregon publicly shared the information on “other” diagnoses of people who qualified for the lethal prescription drugs before discontinuing the practice of transparently listing the “other” conditions. In that year’s annual report, the Health Department listed among those deemed eligible those whose underlying illnesses were diabetes, arthritis, anorexia, and hernia – in fact, 8% of all people who accessed the lethal prescription in 2021 in Oregon were individuals with these highly treatable diseases and conditions. 5
Fifth, there is no required evidence of consent or self-administration of the lethal drugs. Though required as a purported safeguard, there is really no way for authorities to know whether the lethal dose was self-administered and consensual at the time of its ingestion. In Oregon, in about half the cases or more, no healthcare provider was present at the time of ingestion of the lethal drugs or at the time of death. 6
Based on the history of concerns regarding the dangers of assisted suicide legislation on people with disabilities, NCD urges your careful reading of our 2019 report, The Danger of Assisted Suicide Laws and your consideration of its findings and recommendations. I reiterate that NCD, as a bipartisan federal advisory agency, has, for nearly 30 years, recommended that state legislatures not pass such laws.
Thank you for your time and consideration. Please do not hesitate to have your staff contact Joan Durocher, our Director of Policy and General Counsel, at jdurocher@ncd.gov with any questions or concerns you may have on this report.
Respectfully,
David Shawn Kennemer
Acting Chair, Vice-Chair
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1 National Council on Disability, The Danger of Assisted Suicide Laws (2019), at National Council on Disability | The Danger of Assisted Suicide Laws.
2 Oregon Health Authority, Public Health Division, 2024 Oregon Death with Dignity Act Data Summary, 15-16, https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year27.pdf>.
3 Id, at 15.
4 State of Connecticut, Division of Criminal Justice, “Testimony of the Division of Criminal Justice,” Hearing on H.B. No. 7015, Joint Committee on Judiciary, March 18, 2015. Also State of Connecticut, Division of Criminal Justice, “Testimony of the Division of Criminal Justice,” Hearing on H.B. No. 5898, Joint Committee on Public Health, March 18, 2019, https://www.cga.ct.gov/2019/PHdata/Tmy/2019HB-05898-R000318-CT Division of Criminal Justice-TMY.PDF. The Division of Criminal Justice used the same language regarding the same section number in both instances.
5 Oregon Health Authority, Public Health Division, Oregon Death with Dignity Act, 2021 Data Summary, 12, note 3, https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year24.pdf>.
6 Id, at 16.