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Illinois

Status of End-of-Life Legislation

The Illinois End-of-Life Options for Terminally Ill Patients Act (SB 3499), that would authorize medical aid in dying in Illinois, was introduced in the Senate on February 8, 2024 by Assistant Majority Leader Linda Holmes (D 42). The legislation is summarized here.

The majority of Illinoisans support medical aid in dying. In a 2023 poll, 71% of likely Illinois Voters supported this compassionate legislation. The majority of Illinois physicians also support this option with the key safeguards in the legislation

Survey of Illinois Physicians’ Attitudes Toward Medical Aid in Dying as an End-of-Life Option

Illinois Legislative Campaign Overview

The Compassion & Choices Action Network Illinois team and the ACLU of Illinois are partnering in the Illinois End-of-Life Options Coalition to advocate for the end-of-life care option of medical aid in dying for qualified terminally ill Illinoisans. If you would like to get involved in this movement, please sign up here.

Polling

Legislation to allow medical aid in dying, an option for mentally capable, terminally ill adults to peacefully end unbearable suffering, is supported by a wide majority of Illinois voters, regardless of political affiliation, disability, race, gender identity, age or religion.

5 charts showing support for Medical Aid in dying across demographics in Illinois

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Hear from Illinoisan Deb Robertson

Nilsa Centeno is the mother of the late Miguel Carrasquillo, a Chicago chef who died in his native Puerto Rico in 2016 of brain cancer while advocating for medical aid in dying.

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Tools and Resources

Illinois Newsletter Archive, issues linked below

Fall/Winter 2022
Summer 2022
Spring 2022
Fall 2021

 

simple blue medical cross graphic.For Patients Access the Illinois Advance Directive  

 

 

tools for end of life planning and decision making.End-of-Life Planning Use our step-by-step guide to chart your journey.  

 

 

advance care planning and resources in Spanish, espanol.Los recursos en Español Los recursos en Español.  

 

 

answers to questions about COVID-19, including treatment and end of life.COVID-19 Toolkit Get answers to your questions about COVID-19 and end of life care.  

 

 

tools for end of life planning and decision making.Resources for Providers Find resources tailored to the needs of healthcare providers.     

 

 

Sophie Meyn seated petting her dog

“I realized that all of the beauty in the world was also for me. I hadn’t realized that until I was diagnosed. The world is so beautiful and miraculous and abundant.”

Sophie shared her story in October of 2021.

Early 2016 was a happy, but busy time. I was working in childcare – I love children – and I could take my daughter, Stella, with me. I was also going to school to study early childhood development and to become a preschool teacher, and I had recently gotten engaged to my partner, Andrew. We were making plans for our wedding for June that year.

A week after our wedding I realized I couldn’t ignore the headaches I had been getting, which had been slowly getting worse for about a year. I blamed it on my family history of migraines and got ready to be diagnosed with that. Because it wasn’t presenting like a normal migraine, I ended up getting a CT scan. Then I had an MRI and was diagnosed with a brain tumor. I was devastated, but determined to have fun while I could still. 

I scheduled my first brain surgery for the end of the summer. The day after my diagnosis, we went straight from the hospital to Wisconsin. My partner’s family has a lake house in the countryside and it is my favorite place on Earth. I went paddle boarding on the lake and for the first time in my life I realized that all of the beauty in the world was also for me. I hadn’t realized that until I was diagnosed. The world is so beautiful and miraculous and abundant. It was a deeply profound moment that made me appreciate the world and my life on a level I didn’t know existed.

In August, I had exploratory surgery that lasted seven hours and had an incredibly hard recovery period. The surgery showed that I had an oligodendroglioma, a primary central nervous system tumor. The tumor was about the size of a golf ball, and the only issues it was causing me at this point was severe headaches. It was so hard to wait for the pathology report from the surgery. I knew that gliomas that have a grade 3 or higher have a prognosis of less than a year to live. I was so scared.

When the results came, they showed that the tumor had a grade 2, which meant it was precancerous, and that was such a relief. But my doctors told me that the nature of this disease is that the tumor is diffused and hiding and impossible to get all out, that those cells tend to grow and over time mutate into an aggressive form of brain cancer. I was in really rough shape for a while. I was very weak on my whole right side because of the surgery but tried some dangerous diets thinking that would keep my tumor from growing back.  Thankfully I snapped out of it and started eating regularly again, gained strength and put some weight on, worked hard and got stronger.

I so wanted – and want – to live. I love moving my body: I dance, do yoga, I am obsessed with my stationary bike, I love to hike, I love paddle boarding, I love riding horses. I love to be out in nature with my dog and forage and take photographs. I love gardening and growing medicinal plants. I love making art and being creative in the kitchen. I love being and playing with my family.

After my first surgery in late August 2016, I had a couple of grand mal seizures. In 2020 I had another seizure, and an MRI showed that the tumor was growing back. I had to have surgery again, which I did in early September 2021 – at the age of 34. During this surgery I was awake so that I could speak and move. We worked as a team. I was made to speak and move because my tumor is so close to the part of my brain that controls speech and movement and there was a higher risk of permanent damage if I wasn’t able to relay information during the surgery. To be honest it was incredibly hard, but they did an excellent job. I am recovering a lot faster this time.

If the tumor does upgrade from grade 2, I could possibly have a lot more seizures. I live in fear of seizures – that they will increase. If the tumor grows back a lot of really unpleasant things could happen. I fear not having control. If my tumor becomes more aggressive, which it is almost certain to, I want the option of medical aid in dying in my home state of Illinois.

Talking about and advocating for medical aid in dying means advocating for something that could give me control. I know people are working on educating people about medical aid in dying in Illinois, and I have spoken with my state senator about the importance of authorizing it here. I want to have this as an option for myself – if I ever need it – and for others.

I don’t want to die and I don’t want anyone to misconstrue my advocacy as my wanting to die. I very much want to live. I love my life, I love my daughter, I love my husband, and I don’t want to leave them. I want to keep trying as long as there’s hope. But I want to avoid being trapped in my body, in pain as it’s breaking down, knowing that I’m dying, for who knows how long. I desperately want to avoid unnecessary and prolonged suffering.

Having an incurable brain tumor means needing to be thoughtful about the likely reality of facing the end of my life earlier than I would like to accept. I would prefer to have the right to decide for myself whether or not medical aid in dying makes sense, rather than have strangers keep the option unavailable to terminally ill Illinoisans. I would prefer to organize things, and maybe organizing my own last chapter would bring me some peace. It could be beautiful. I like to live with intention and I would like to die with intention – with care and thought. Possibly have a farewell party with people I really love and love me back singing me out.


The Compassion & Choices family comprises two organizations: Compassion & Choices (the 501(c)(3)), whose focus is expanding access, public education and litigation; and Compassion & Choices Action Network (the 501(c)(4)), whose focus is legislative work at the federal and state levels.

 

Supported in part by Compassion & Choices Action Network.

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