Jim Kelly

Jim Kelly, previous Peace Corps volunteer and retired Peace Corps staff training contractor, is living with prostate cancer, the same type of cancer his father died from. Since his diagnosis, Jim has had conversations about what matters to him most and has filled out his advance directive. He is also advocating for the option of medical aid in dying in his home state of Illinois so that terminally ill residents can decide when enough is enough.
Jim Kelly and His Husband Bruce

“End-of-life processes can look very different, but we all deserve autonomy to determine what kind of care we do and don’t want, and when enough is enough.”

Jim shared his story in October of 2023.

In 1991, my father was placed in a nursing home because of rapidly failing health caused by prostate cancer treatments. He had always said he didn’t want to be in a nursing home, but it was the only option at the time. One day, a nurse found him dead on the toilet. He was all alone. There were no goodbyes, no last words, no embraces, no comfort. My mom, for the rest of her life, was haunted by that image.

In 2009 I was diagnosed with prostate cancer. I had flashbacks of my father’s long and unnecessary suffering. I am fortunate that I was diagnosed at a time when many advances had come about in the treatment of prostate cancer, and new treatments are coming out all of the time. My dad wasn’t so lucky.

Surgery, then radiation and testosterone-suppressing drugs, have kept the cancer at bay. After all these years since my diagnosis, I am still in treatment, and every six months I get a PSA test to monitor changes. As the efficacy of one treatment has faded, a new treatment option has been able to pick up its slack. I’ve also been lucky to not have any significant adverse reactions to treatments, some of which are medications that friends with prostate cancer have not been able to tolerate. And I can’t say enough about how much I appreciate my primary care physician, urologist, oncologist and endocrinologist, who have been at my side during this journey.

Eventually, however, the treatments will stop being effective. Of course I could also die of something else. My point is, if fate decides my death won’t be sudden, my fervent desire is to have much more control over how I die than my father did.

My husband, Bruce, and I don’t know exactly what to expect, but we’ve had tough and thoughtful conversations about what is most important to us. We briefly considered moving to another state where the option of medical aid in dying already exists, but neither one of us was enthusiastic about that idea. We’ve been together since 1988 and have an incredible community of friends here in Oak Park, Illinois, and we want to continue enjoying them. And, I can count on them surrounding me as I die. 

No one should have to sacrifice the presence of their community or lose access to their chosen medical practitioners in order to have access in another state for medical aid in dying. End-of-life processes can look very different, but we all deserve autonomy to determine what kind of care we do and don’t want, and when enough is enough.

Before my diagnosis, I hadn’t really thought through my end-of-life plans. Since then I’ve taken more control through stipulating my wishes and sharing those with family. I thought I had done a fairly good job of figuring things out, but going through Compassion & Choices’ invaluable workbook entitled “My End-of-Life Decisions: An Advance Planning Guide and Toolkit,” I realized there were all kinds of things that I hadn’t considered. This toolkit has been enormously helpful in making sure I cover all the bases. 

I now recognize the value of all adults writing and communicating their end-of-life wishes even before a serious diagnosis. Most hospital systems have practices that favor doing all the things that they can throw at a disease, life-saving measures at all costs. These approaches can rob your autonomy and replace it with people who are going to make decisions for you that you might not want, unless you’ve written out your advance directives and communicated your wishes to your loved ones and medical providers.

Another of the ways I’m taking more control is through my own advocacy in support of passing medical aid-in-dying legislation in Illinois so that people with terminal illnesses can request a prescription from their doctors for medication that will result in a gentle death. I have spent the last few years sharing information with the public about what medical aid in dying is and isn’t, and asking for their needed support to encourage Illinois lawmakers to make this compassionate option available to their dying constituents.

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