Guest Commentary | Give loved ones the gift of clarity, closure

Guest Commentary | Give loved ones the gift of clarity, closure

By KIM CALLINAN

My dad is a planner. He planned for his marriage, my brother's and my college education, his retirement at age 55 and just about everything in between and after he retired.

He was equally thoughtful and deliberate with his parenting. He always made sure that I was prepared for the next major milestone, responsibility or decision in my life ... with one significant and sobering exception.

Seven years ago, he had a major blockage in his arteries. It was serious, life-threatening actually. He needed an immediate operation: quadruple bypass surgery.

Upon hearing the news, I immediately booked my flight to see him, flew to Orlando and headed straight to the hospital. I arrived shortly before his surgery. As I greeted him, he pulled out a piece of paper, pushed it toward me and said, "Sign this."

"What is it?" I asked.

"Just the paperwork we need to make you my health care proxy," he replied, nonchalantly.

Without a question, I signed the paper and handed it back.

Several hours into his surgery, I looked up at my mom and asked her, "Why did Dad make me his health care proxy and not you?"

"He knows I'd never do what he wanted," she said matter of factly.

"Well, what would he want?" I asked.

"I don't know; we never really talked about it. He just knew I would never make the difficult decisions to end his life; you know, like pulling the plug," she said.

No, I didn't know. I didn't know anything about pulling a plug, when to end his life or what my father wanted. He always prepared me for everything. I was not prepared for this scenario! My heart began to beat faster ... and louder ... and I began firing questions at my mother, one after another:

"How will I know what he wants? When am I supposed to pull the plug? What makes him think I can make the hard decisions?"

I paused after each question, only long enough for her to confirm what she had already acknowledged at the outset: She didn't know.

Next, I did what people in the 21st century do: I asked Google.

Unfortunately, and not surprisingly, Google's answers were no clearer. What I did learn was that being a health care proxy was a significant responsibility — it required intimate and detailed conversations with the sick person — none of which I had had. I was thoroughly unprepared for this grave responsibility.

My dad's surgery lasted for five more hours. I was a wreck, fluctuating between upset, distress, dismay and anger. It was the longest five hours of my life.

Fortunately, my story had a happy ending. My father recovered fully from his surgery, and since then, we have had many conversations about his end-of-life care preferences. I am now prepared.

By happenstance, and an especially wonderful quirk of fate, I now lead the largest national organization dedicated to improving care and expanding options at life's end.

With conclusive scientific data, I can say with certainty that my story is fairly common: Three out of four people have not had a conversation with their loved one about their end of life wishes, according to data from the Centers for Disease Control and Prevention. Based on countless conversations with our supporters, I now realize that I was unusually fortunate: Getting a second chance is not common.

As baby boomers age, more and more people are having to navigate the onset of a serious diagnosis or plan for the inevitable end for themselves or a loved one. Unfortunately, a failure to plan is only the tip of the iceberg with the problems that exist within our contemporary end-of-life care system.

More than 100 Champaign residents have recognized this stark reality and are invested in these issues through the Illinois End of Life Options Coalition, a group that has come together to take charge of end-of-life planning and work to authorize medical aid in dying for the terminally ill in Illinois.

While perhaps hard to believe, it's really hard to die in this country, and even harder to navigate your care options if you value quality of life over quantity of life. The good news is that with information and planning, it is possible to chart an end-of-life journey that is consistent with your values and priorities.

Kim Callinan is CEO of Compassion & Choices, the nation's largest national organization committed to improving care and expanding options at life's end. She holds a master's degree in public policy from Georgetown University. Callinan will be presenting "Charting Your Own End-of-Life Journey" at the Champaign Public Library from 7 to 8:30 p.m. on June 4.

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