Why Deny Someone Comfort and Control at the End of Their Life?

(This article, used with permission, first appeared on the Circle of Friends for the Dying (CFD) website as a Full Circle Blog post in February 2021. The Full Circle Blog is a forum for people to express their own experiences about dying and death. Laura Kelly’s personal narrative is just that — her expression, her opinion. CFD does not promote or condone medical aid in dying or right to die initiatives. Their mission is to give people in need the right to live comfortably and safely in their final days. Circle of Friends for the Dying does not endorse all ideas expressed by contributors to Full Circle.

Laura Kelly is an editor and website designer based in Mount Kisco, New York. She’s been a Death Café committee member since 2019. Inspired by her father’s end-of-life experience, she became a New York volunteer with the national advocacy group Compassion & Choices as they carefully crafted the best and safest law possible to give terminally ill New Yorkers the option to request medical aid in dying.)

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The first thing people would say upon meeting my father was, “Just how tall are you, anyway?” I suggested he hand out cards saying, “I’m 6 foot 5 inches. Yes, I played basketball. No, I wasn’t very good.”

Besides being tall, Larry Kelly was an Irish-American lawyer and medical researcher who prided himself on being the “I’ll take care of it” guy for his family. When one of his kids or grandkids needed a sounding board or a helping hand, he was always there with great advice and his trademark wry wit. He was always the solution, never the problem.

When Larry learned he had Stage 4 colon cancer, he leapt into action. He did extensive research on cancer drug trials, and the treatment he and his doctors developed kept him vital and healthy for such a long time that life seemed to go back to normal. We celebrated birthday after birthday following his diagnosis. His four kids could almost believe he wasn’t mortally ill.

I think he believed it, too. This is where he made a mistake. He wasn’t expecting the cancer to suddenly take a turn for the worse. In fact, he hid it from his family for two months so as not to upset us, while hoping he would make it into another drug trial. But time was running out.

When his doctor finally told him that he was too sick to get into another drug trial and there was nothing more to be done, my father asked his four kids to get on the computer to find out the residency requirements for Vermont, where medical aid in dying is legal.

Medical aid in dying gives terminally ill adults the option to request a prescription for medication they can take to shorten a difficult, painful dying process, if they so choose. With this option, my dad felt he would be able to say a peaceful, loving goodbye to his loved ones at the time of his choosing, before suffering became unbearable for him. It fit with his determination to be in as much control of his death as he had been of his life.

After I told my father that timing would not allow him to move to Vermont and access medical aid in dying, the anger and despair I saw cross his face is something that will live with me the rest of my life. Anger, because after four years of doing everything he could to extend his life, he would now have no say in how or when he would die. And despair, because he feared the suffering and loss of control that was headed his way.

His fears were well-grounded. The tumors in his liver caused terminal agitation, which one of the home hospice nurses told us is worse than pain and can’t be treated. My suffering father kept apologizing to us for the upset he was causing. In his mind, Mr. Solution had become the problem, adding to his grief and distress.

The way my father died was not how any of us had pictured it—most of all, him. The words “harrowing” and “traumatic” come to mind. But “absurd” is also a word I’d use. We had discussed moving a dying man to a state far from his family, just so he could choose to die as he lived—on his own terms, with forethought and self-determination.

Would my father actually have used medical aid in dying if he’d had access to it? We’ll never know. In states that offer the option, only a small fraction of terminally ill people procures the prescription. A third of those who do, chooses not to use it. But I do know he wanted and deserved that option, for peace of mind and a sense of control and dignity during this last important phase of his life.

I also know that in states that have the medical aid-in-dying law, all patients are encouraged to openly talk to their families and doctors about end-of-life issues and choices before things get dire.

We kids would have had time to learn how home hospice works. We would have understood sooner that we weren’t there to nurse my father back to health, but rather to support him in his last precious hours, the way he’d supported us our whole lives. And he would have had a framework to articulate his end-of-life wishes to us and his doctors, instead of burying the issue and running out of time.

Some claim suffering is ennobling or redeeming. But for my family it came close to ruining the end of a good life, leaving bad memories for loved ones. People with end-stage terminal illnesses, like my independent and funny father, should have choices about how they leave this world. I know for peace of mind I would want that for myself.