For just about everyone, life is hard enough. However, talking about ending that life—especially when one is terminally ill—is just as difficult.
Ten states have authorized medical aid in dying, although Illinois is not one of them. Deb Robertson, a 65-year-old Lombard resident (and member of the LGBTQ+ community) who is a retired social worker, would like for this state's status to change.
Robertson has a very good reason for that. She has been diagnosed with incurable stage four neuroendocrine carcinoma—a rare form of cancer that is very rare and aggressive.
"Two years ago, I was diagnosed with [this] terminal cancer," Robertson said. "I was a very healthy individual. I was working a lot and was very much into pickleball. I'm sad and angry that I can't play like I used to.
"I was cold-cocked [by the diagnosis]. I went to the doctor for a slight pain in my side and it turned out to be this carcinoma. The doctors gave me less than a year to live and I've outdone that, and they nicknamed me 'The Warrior.'
"Of course, my whole life changed. I had to retire and I couldn't play because they put me on chemo, which worked well initially. But [the cancer] came back within three months and it's progressing a little more—and I can feel it. I'm on my fourth different kind of chemo."
Robertson said she believes that the extra time she has "been given from God is so I can be an advocate for medical aid in dying. When I originally got involved with medical aid in dying with [end-of-life advocacy group] Compassion & Choices, I had always been an advocate. My whole life, I've worked with young people and I've developed programs for homeless and marginalized—especially LGBTQ—youth. I did that for 30 years; all of a sudden, to not be able to work was devastating to me.
"What I decided was that I needed to find something I was truly passionate about again, to take up the time while I was dealing with all of these life-changing things. So I did research on medical aid in dying, and I called Compassion & Choices."
However, Robertson revealed that she had "thought about medical aid in dying long before I was diagnosed with this cancer. When I was about 21—my mother's a doctor and both of my sisters-in-law are nurses—I would always say, 'I don't want to die all shriveled up, in excruciating pain and with someone wiping my rear end. So I need someone to commit to that not happening to me.' I never thought I'd really have to think about this possibility."
Having this disease has provided Robertson an opportunity to connect with others who have the illness—but there is a serious downside: "I have a group of people all over the world who are on a Zoom call on Thursday nights. Because it's such a rare cancer, they can't do clinical trials and research. There are 11 people I've watched in the past 18 months who have died painfully from this cancer, so I know it's going to get ugly and that there's a possibility I won't be here for the approval of the bill."
The bill Robertson referred to is the End of Life Options for Terminally Ill Patients Act (SB 3499), which activists hope the Illinois legislature passes during the spring session. Introduced by Democratic state Sen. Linda Holmes, the measure authorizes a qualified patient with a terminal disease to request that a physician prescribe aid-in-dying medication that will allow the patient to end the patient's life in a peaceful manner.
Some critics have contended that doctors would be violating the Hippocratic oath by participating in terminating someone's life; the opponents also question what the patient's state of mind might be when making this decision and some also adhere to religion as a reason. Robertson has heard these criticisms and even had to convince someone close to her: "My brother was a doctor—and he didn't support [medical aid in dying], initially. So we sat down and talked about it. Now, he understands the whole process. When that bill passes, he will have that option to participate—or not participate. Now he's supportive of it."
Robertson feels that religion is a dominant factor as well as the oath, but noted, "My response to [the oath argument] is that people become doctors because they want to help people. Some doctors offer palliative care, but sometimes that's just not enough. Being shot up with morphine until you're not moving is [not necessarily helpful]—you don't know if people are still in pain because they can't communicate because they're all doped up. Also, if the cancer [spreads to] my brain, communication will be an issue.
"The argument about medical aid-in-dying being suicide is ridiculous. I spent 30 years helping people not commit suicide and they were struggling with mental-health, gender and LGBTQ issues as well as trauma."
One factor in Robertson's favor is her support system. "My family, my grandchildren and my wife [Kathleen] told me that they'd continue [advocating] if I'm not around to see the end," Robertson said, her voice choking with emotion. "It's about saying goodbye the way I want to say goodbye.
"I individually met with my grandsons, who are 15 and 17, to explain to them what it's all about, because we've been getting some press. One of them is emotional and asked, 'Granny, if it becomes legal, does that mean you're going to die next week?' The other grandson is very [logical] and asked, 'Granny, I just don't understand why the other states aren't making this okay.' That, to me, was very telling."
And regarding Kathleen, Robertson said, "My wife is very emotional, and always has been. It's been a lot for her. She's 66 and is still working because we need the insurance for my medications and chemo. If we went on Medicare, a lot of the medicines are not necessarily recognized by the medical profession.
People have suggested to Robertson that she could move to a state that allows medical aid-in-dying—but she steadfastly refuses. "Why in God's name would I leave my family and friends to go to a strange place with strange doctors?," she asked. "It makes no sense."
"I want to do everything that I possibly can while I can speak," Robertson added. "I think a lot of it is about education—to help people understand what medical aid in dying is really about. It's not physician-assisted suicide or something related to Dr. Kevorkian. It's really a well-thought-out decision that I think everyone should be able to make on their own. It's fine if you don't want to do it; just don't stand in the way of it being an option for me. It's about respecting someone's beliefs and journey. I didn't choose to have this diagnosis. This passion is what keeps me going."
When asked what she wanted her legacy to be, Robertson responded, "It's funny that you ask that. That's one of the first things I thought about when I was diagnosed. I want to be remembered for trying to make a difference in the world. Medical aid-in-dying is my [current] passion but I really want to be recognized for my efforts in helping young people."
She recently received an award from Naperville-based 360 Youth Services for being its most influential employee ever: "I was with them for [more than 20] years. Getting that award was huge for me, because I retired but still served on committees and was a consultant."
And, now, this warrior will keep fighting a very personal battle.