Changing the Way We Die

Compassionate end-of-life care and the hospice movement

Is There a Right Way to Die?

A dying teenager’s song and thousand-watt smile go viral and raise the question:

Earlier this month, 5,000 people packed the Mall of America to sing “Clouds,” a hit song written and recorded by a terminally ill Minnesota teenager named Zach Sobiech.

He wrote “Clouds” to say goodbye to his family and friends. It reached No. 1 on the iTunes singles chart, and a short video of the recording session has received more than 9 million views on YouTube. A 22-minute documentary, “My Last Days: Meet Zach Sobiech,” has logged nearly 12 million views. It is reposted endlessly on Facebook and shown in high school classes.

It is an inspiring story of living fully in the face of death, with grace, an easy laugh and a thousand-watt smile. Zach refused brutal treatment that, at best, would have bought him some time, so he could be home with his close-knit family, hang out with his girlfriend, and make music. He died in May.

The video is part of a “My Last Days” series, and though none of the others has matched Zach’s for web traffic, each mini-documentary has drawn hundreds of thousands of views:

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Ann Silberman, a 52-year-old wife and mother who has terminal breast cancer, tries every treatment available in hopes of living to see her younger son graduate from high school.

Christopher Aiff, age 21, says no to chemo and takes off on a glorious trip around the world with his beloved sister, after being told that his bone cancer would kill him within two years.

Juli Palmer, a wife and mother of five who always loved photography, spends hours capturing and editing memories for her family.

Every video in the series can grab you by the throat, stop you from stressing about things like work deadlines and propel you to hug your kids. That is by design. “My Last Days” director-producer Justin Baldoni has sought subjects “who are battling a terminal illness and have been given a specific number of weeks or months to live” and whose stories of “courage, hope and determination can inspire others to re-examine the way they are living.”

Predictably, Baldoni’s search initially provoked blowback online. People accused him of exploiting the dying, of trying to package the experience in the relentless cheer and uplift that the Chicken Soup for the Soul books have proven to be a winning formula. What about patients who rage at their death sentence, some people asked. Is it somehow not OK to feel angry or frozen with fear?

I wondered too. Is a death less worthy of our attention—and what measures our attention these days more than the number of online hits—because a person does not go gently, smiling sweetly, into the good night?

The series addresses this, to a point. Everyone has phenomenal attitudes but some darker moments are shown. “Dying sucks. Cancer sucks,” Juli says. “I try to not let it rule me and take over everything.”

While her husband struggles, without much success, to put on a smile, he sees her point: “You gotta be positive, like she says. … The sun comes up every day.”

The videos are spurring conversations about death and dying—and we need more discussions like that. Seventy percent of Americans say they hope to die at home, yet only about 30 percent actually do, often because people can’t bring themselves to plan until it’s too late. We spend billions of dollars on medical treatments in the last year of life. Too often these achieve nothing but leave patients too ravaged to say goodbye to the people they love.

Perhaps the more we see people dying on their own terms and talking frankly about it, the more comfortable we’ll become about discussing our final wishes and preparing ourselves to be there for those we love when the time comes—the way Zach’s friends and family, and Juli’s, Ann’s and Christoper’s are there for them.

“The decision to be positive is not one that disregards or belittles the sadness that exists,” Christopher says. “It is, rather, a conscious choice to focus on the good and to cultivate happiness, and genuine happiness. Happiness is not a limited resource.”

 

Posted by Fran Smith

 

Fran Smith and Sheila Himmel are the co-authors of a new book on compassionate end-of-life care, Changing the Way We Die.

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