Support for End of Life Options for Terminally Ill Patients Act

My name is Deb Robertson. Thank you for allowing me to share my story and make clear the critical need for this legislation that will provide terminal adult Illinoisans – like myself – a full range of end-of-life options, including medical aid in dying. I deserve to have this option available to me.

I was diagnosed in January of 2022 with a very rare and aggressive terminal cancer called neuroendocrine carcinoma. I remember the call from my doctor telling me my liver was full of tumors. How could this be? I am in good shape, I eat healthy, and I am very active. After a biopsy and multiple scans, I was told there was no cure for this disease. I am going to die.

Sharing the news with my wife, parents, children and friends was brutal. But I have kept fighting. After several months of chemotherapy, it stopped working.

I continued to try several more chemotherapies, but the disease kept growing. There are very few treatments for this cancer because it is so rare.

 I am in a clinical trial that has shown some progress and kept me stable for 7 months. But the reality is that this trial will stop working at some point.

I know what this looks like. I join a regular zoom call with people from across the globe who share my diagnosis. I have watched so many struggle in pain to the end of their lives until their last breath. Today, I know the end for me could be near. That is why I hope you will appreciate that i want to spend part of my remaining time doing everything i can to ensure that terminally ill Illinoisans have the full range end-of-life options to include medical aid in dying.

Let me be very clear. I love life. I don’t want to die. I love my family. My wife and our children have supported me throughout my cancer journey and support me in pursuing this end-of-life option. They all live in Illinois, my parents, my wife, our adult children, grandkids and siblings. Even my 16- and 18-year-old grandsons support me being here today. But, I am going to die, and when the time comes, I pray that this committee and your colleagues will allow me – and others with terminal illnesses – this option at the end-of-life.

This legislation is truly about options. To be sure, I was not given an option about whether I got this terminal disease: but I deserve options about how and when I leave this earth. I deserve options to enjoy the time I have left with my loved ones and friends, and not worry about how my death will occur. It is the last bit of control left to me. But I can only have those options if you vote to make this bill a law. And that is why I am spending a portion of the precious time remaining to me to ask this committee to support the adoption of medical aid in dying in Illinois.

Where I live should not dictate whether I have access to medical aid in dying, which would give me the option to die peacefully and on my own terms. There is a level of comfort having this option even if one decides not to use it.

As an Illinoisan, I should not have to move to another state to die peacefully, on my terms. Anyway, I would never leave my family and friends.

Let me speak for a moment to those in this room who do not agree with me and other terminally ill people from Illinois who want a full range of end-of-life options. I respect your opinion, your right to that opinion and your passion.

If this choice is not for you, all I ask is that you not let your opinion force me – and countless other terminally ill people in Illinois – from having this choice for ourselves. For us.

Senators, you are likely to hear today that medical aid in dying is assisted suicide. That language causes me pain both to my body and soul. Unless you are terminally ill, you can’t know how it feels to be told you are going to die.

I spent three decades as a professional counselor, supporting high risk youth ages 13-24. Many of these youth were thinking of suicide or attempted suicide. I made it my life’s work to help these youth live life and look forward to their future.

To those who think of this as assisted suicide, please know that I don’t want to die. The choice is not mine.

Medical aid in dying does not change that – it only gives me some choice about the end of my life, the life I have, love and chosen.

As a resident of Illinois for more than six decades, I urge you to show empathy for Illinois residents – and your constituents like me – in supporting medical aid in dying in our state. So many folks like me – and our families – will be eternally grateful.

Thank you for allowing me to share my story and to talk about the need to have medical aid in dying as an end-of-life option for myself and other Illinoisans.

Please vote yes.

My name is Beth Langen and I’m here to testify in support of Senate Bill 1950 (House Amendment 2) - Deb’s Law.

I became Disabled due to a traumatic injury at 17.  

The first thing I felt was a tremendous loss of control over my life. Much of what I have done and worked for since then has been to regain and retain that - medically, economically, personally.  

It’s why I embrace the most fundamental principle of the independent living movement and the disability rights and justice movement - that all of us, regardless of circumstance, have and deserve the right to self-determination, to make decisions and to exert control over our own lives, including about the services and the care we receive. 

That was 50 years ago. And as I’ve gotten older, the odds have gotten increasingly better that I will die of one of the terminal conditions that all of us may face - like heart disease or cancer. 

We as a culture don’t deal particularly well with the only thing in life that’s certain - our eventual death. 

I think that one of the most frightening things about death for most of us is that it means the ultimate a loss of control. 

I want - for myself, for those I love, for anyone else - the right to have some modicum of control in not just how I have chosen to live, but in how I approach my death if it is from a terminal illness. And this is about terminal illness, not acute or chronic illnesses or conditions that can be managed with treatment. 

Death elicits fear.  I understand how all of this can elicit fear.  And for many of us who have been marginalized by disability, age, poverty, race, and other socially imposed constructs, we also fear being devalued or dismissed by systems and professionals in those systems, including medical professionals when we face chronic or acute care situations. And this is just not what’s this bill is about.  This is not about chronic or acute care.  Disability is not terminal.

Death, like life, is easier to navigate when you know you will have options to choose from, even if you never need to, or even if you choose not to.

• The ability to control the decision-making process in SB 1950 is detailed and robust. It’s a very high bar to be eligible to participate. 
• It requires you to be able to be fully in control of the decision-making process and of the administration of medication, only when you have a prognosis of less than 6 months or less to live.
•  It requires consultation with at least two different medical professionals. It has very strong provisions that prevent anyone from assisting or exerting undue influence, including any person to whom you might have already given health care power of attorney.  
•  It is a trusted and time-tested medical practice that is part of the full spectrum of end-of-life care options, including hospice and palliative care.  People move across the country to access it.  For those with disabilities or marginalized by poverty or whose terminal illness prevents it, we need the equity that comes from being able to choose that option where we live.

This bill doesn’t lessen anyone's control or rob anyone of choice - over our lives, or at the point when our lives reach an inevitable, unavoidable end that no treatment can improve or reverse.  This bill strengthens our control. As someone who has learned to never take my right to self-determination for granted, I hope Illinois joins the many other states who extend this ability to the end of our lives so that all of can choose a death that is peaceful, without unnecessary suffering, with less fear. 

Fear is not how you make public policy in Illinois; it rarely makes for good health care. It’s not how we want to live and it’s no way to have to face dying. I hope you’ll support this bill for anyone who is able to and simply wants to have another choice as they face terminal illness.

My name is Nilsa Centeno. I am the mother of Miguel Carrasquillo. Miguel was a chef in Chicago when he was diagnosed in 2012 with an aggressive, deadly brain tumor called glioblastoma multiforme. Despite bravely enduring excruciatingly painful treatments to try to cure his cancer, it spread across his body. Miguelito was my only son. He was only 35 years old when he died from his cancer on June 5, 2016.

Miguelito was an old soul with a contagious smile who stood out for his ability to advocate for change, even while he was suffering from the brain tumor that spread all over his body. He spent his last days advocating for medical aid in dying among his beloved Latino community – for a compassionate option that, tragically, was denied to him.

I understand that you may soon have an opportunity to vote on the Illinois End-of-Life Options Act, and so I am writing to you in memory of my only son, Miguelito, to urge you to vote yes.

The emotional pain of losing my only son devours me every day. I will never forget the last time I caressed and kissed my son’s beautiful yet tired face. He was in so much pain. We spoke about God. Miguelito’s voice was frail. His words were mumbled. Yet he reminded me to keep fighting for his legacy to authorize medical aid in dying. Miguel died minutes later, without the end-of-life care option he fought for. Although my son’s voice has gone silent, mine has not.

Passing this compassionate legislation was Miguel's final wish, and it is now my life’s work. I am honored to say that the bill now contains Miguel's name, along with other powerful advocates for this compassionate option. I urge you as a mother: please honor my only son, Miguelito’s memory by voting yes on the End-of-Life Options Act.

In August 2017, my father and I flew to California from Illinois to visit Andrew. I knew Drew wasn’t feeling well because every time we’d eat together, he’d have to go to the bathroom. I talked him into having some tests done the week after we left. His doctors couldn’t even get through the colonoscopy because the tumor was so large. 

When he called to tell me the news, I just dropped to the floor, devastated. Drew had been a cancer survivor at the age of five, but this time things were different. I couldn’t control everything like I had when he was little, when I managed all his doctor’s appointments and so on. Now he was a 29-year-old adult doing all of that alone. The distance was so hard for us, and I was not able to retire at that time. So we did our best going back and forth between Illinois and California, but Andrew did end up spending a lot of time in the hospital on his own, which bothered me. The hospital is a scary place to be by yourself. 

Optimistic man that he was, Andrew initially assumed that this time would be similar to when he was a child: He’d have radiation, chemo, some surgeries, then go about his life. He continued working as a special education teacher and told us that everything was going to be fine after the treatment. 

The next few years saw repeated treatment regimens — radiation, chemo, surgery, again and again — fail to eliminate the cancer. In fact, it spread even further. But Andrew continued to amaze us all with his positive attitude. I never heard him say, “Why me?” He just took the view that this was what he had been dealt in life, and he could either choose to become bitter or keep moving. Thankfully, he chose the latter. 

Andrew was eventually informed that he likely had six months or less to live.

I asked him, “Why don’t you come home to Illinois? You can live here in the basement; you’ll have your own space.” But Andrew was adamant that he wanted to stay in California because he needed the option of medical aid in dying. I did not argue with him; none of our family did. It was clear that having that option gave Andrew great comfort. 

Andrew was determined to be in charge of his disease, and take charge he did. Creating a podcast — Death with Dignity — and coming to terms with a terminal diagnosis, Andrew saw the gifts his cancer had brought him in the form of all the people he got to meet because of it. Even through a traumatic illness, he was guiding the people who loved him through that journey in a positive way so that we could grow to accept his fate. 

In 2022, Andrew completed the process of requesting a prescription for aid-in-dying medication through California’s End of Life Option Act. Although he wasn’t yet ready to use it, he wanted the peace of mind that having the medicine in hand would give him.

That fall, my ex-husband, Drew’s three sisters and I all went to California to be with him through the last weeks of his life. For about a two-month period, the house was a revolving door, with Andrew’s “ride-or-die” friends from his school, his hockey community and elsewhere constantly visiting. The family would work during the day, and then around 5 p.m. everyone would come over for Mario Kart, football or board games. Even knowing what was ahead, we managed to have so much fun together. 

Andrew’s quality of life was increasingly limited. He did not want to die, and he fought very hard to live as long as he could. But in the end, his day-to-day pain was increasing, his increased pain medication caused miserable side effects, and when he went to the bathroom, it was like a crime scene. One day he just said, “I think I’m ready.” 

As sunset approached on November 16, 2022, Andrew took some time alone with each of us — his sisters, his roommates, his dad and me. He was in his bedroom with its stunning view of the setting sun, with Jaxson, his roommate’s dog, with him on his bed. We all gathered around him. The general mood was lighthearted, with everyone commenting on the beauty of the skyline, sharing funny stories from Andrew’s childhood and Andrew getting us laughing in turn. It was a really positive moment. 

Two nurses from hospice mixed up the medication and gave him a spoonful of raspberry sorbet to take it with. He was asleep within minutes. Soon he started snoring, which was music to my ears since he had not slept well for so long. 

The rest of us sat there listening to the soundtrack he had put together: the Beatles, Tom Petty, the theme song from Harry Potter, tunes he grew up listening to until he passed away. 

While I’m very thankful that our family got to be there for Andrew at the end, I also know that many families can’t do what we did for various reasons — jobs, health, finances, whatever. It would have been easier for all of us if Andrew could have been here in Illinois, since that’s where most of our family lives, and we all could have supported him throughout his entire illness. My mother-in-law, Andrew’s grandmother, couldn’t travel to California because of her age. She never got to see Drew for a final goodbye. I’m asking Illinois lawmakers to give other families a chance to say those goodbyes. 

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Andrew Flack accessed medical aid in dying in California, unable to move back home to Illinois to bring his suffering from a terminal diagnosis to an end. Before his death, Andrew used his last months and weeks to continue to push for the passage of the end-of-life options legislation in Illinois.  His mother Suzy continues to push for the legislation in Andrew’s memory.