Essay: Dying on Her Own Terms

A woman with a terminal illness takes matters into her own hands, with the same sangfroid she exhibited throughout her life.

My friend Carol was a planner, both professionally and personally. A public works manager by trade, she was described by her children as a take-charge, go-into-action-mode person at home.

“Her mind was really busy,” said Kendra, the oldest of Carol’s three children. “Before we even got to an event, she would have thought through everything 15 times.”

So it was totally in character for Carol to plan her own death, after she was diagnosed in 2011 with progressive supranuclear palsy, similar to Parkinson’s disease. The sad diagnosis came at a time when her life was on the upswing after finding late-in-life love with Dale, a retired physics professor and a friend of mine.

Both recently widowed, they met in 2007 at a birding trip in Arizona. After a whirlwind email and long-distance romance (Carol lived in Kirkland, Washington, Dale in Glendale), they married in February 2010 and divided their time between Kirkland, Glendale and their vacation home in Tucson.

I met Carol here shortly after she and Dale began dating. She loved to hike in the woods looking for birds, especially at Horicon Marsh and Havenwoods State Forest. She loved a cold martini, light on the vermouth. She loved “Big Bang Theory” and insisted I watch it. She was interested in just about any subject and was an intense listener.

The diagnosis came after a series of falls that resulted in a variety of complications: bruised tailbone, deep cut above her eyebrow and dislocated shoulder.

“After the diagnosis, I did not see much emotional change,” Dale recalled. “It wasn’t a big shock that threw her into darkness.”

That’s probably because Carol already knew what she wanted to do. She had watched her own mother suffer a dreadful death from breast cancer – at a religious hospital that would give only limited morphine for fear patients would become addicted.

Timing was critical: Carol needed to be able, on her own, to lift the morphine cocktail to her lips and swallow it.

The absurdity of letting a terminal patient suffer, for fear she might develop an addiction, was not lost on Carol. After that, the idea of dying and not being in control – of being trapped in her body and a burden to everyone – scared her. “I don’t want sit-in-a-chair drooling,” she said.

She shared her thoughts with her children. “We said we would support Mom in whatever decision she made,” said her older son, Eric. “It was an empowering experience for her to make that choice.”

The drug carbidopa-levodopa did little to alleviate Carol’s symptoms despite increased doses. Her condition worsened – she could not stand up, could not urinate without a tube, could barely lift a glass to her lips. Her voice became high and squeaky, difficult to understand.

When she decided to end her life, Carol asked both her personal doctor and her Parkinson’s doctor to help her die (Washington is a right-to-die state). Neither would agree to participate. The family thinks this was because Carol had received medical treatment in three different cities and had not developed a deep or long-term relationship with either doctor.

She then sought counsel from Compassion & Choices, a right-to-die group. Her death counselor described what suicide would be like, which reassured Carol. The counselor’s brother, a pharmacist, calculated how much morphine, based on Carol’s weight, would be needed to end her life. She began stockpiling.

Her family had been warned to be extremely careful so they could not be implicated in her death. Timing was critical: Carol needed to be able, on her own, to lift the morphine cocktail to her lips and swallow it.

I last saw her in Glendale four months before she died. I wouldn’t let myself cry at the thought of losing my wonderful new friend, so I forced myself to listen as she calmly talked about her demise.

“Dale is quite attractive and desirable,” she said. “After I go, there will be plenty of women bringing him covered dishes to help him get along. You should think about it.”

Taken aback, I thought to myself: So like Carol to plan for Dale, even though she’s dying.

On Feb. 6, 2013, Carol woke up and said, “Today’s the day.” Dale, Kendra and younger son Tim were with her as she drank the liquid morphine diluted in orange juice to disguise the taste. Upon seeing her loved ones cry, Carol’s last words were, “You don’t need to cry for me. I’ve lived a wonderful life, and now I’m not afraid to die.” After three hours, she stopped breathing. 

In his important book Being Mortal: Medicine and What Matters in the End, Atul Gawande writes, “People die only once. They have no experience to draw on.” True, Carol died just once, but in choosing how to die, she drew on a lifetime of shaping her own experiences. If I’m ever in a situation like hers, I hope I have even half of her foresight and resolve.

“A Planned End” appears in the 2018 Health issue of Milwaukee Magazine.

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