What We've Learned in Two Decades Without Morrie

Rob Schwartz has visited his father’s grave outside Boston countless times. But his trip this week — which required a flight from Tokyo — had special meaning because he and many others are marking the 20th anniversary of the death of his dad, Morrie Schwartz. Yes, his dad is that Morrie, as in Tuesdays with Morrie, the biggest-selling memoir in publishing history, by Mitch Albom.

Less than two years passed from the time Morrie was diagnosed with the incurable ALS, or Lou Gehrig’s disease, until he died in November 1995. In that short span, the late Brandeis University sociology professor may have done more to lift the veil on death than anyone since Elisabeth Kubler-Ross, who literally wrote the book “On Death and Dying” in 1969.

As the disease progressively robbed him of his motor skills, Morrie shook off any self-pity and invited friends and family to a living funeral months before his death so they could say things to him he couldn’t have heard at a conventional memorial service. Morrie’s thoughts on living and dying were featured in The Boston Globe under the headline: “A Professor’s Final Course: His Own Death.” And his lessons continued in a series of memorable ABC Nightline conversations. “This culture is so stuck on death,” Morrie told Ted Koppel, “in terms of its fear, hiding it.”

It’s something Koppel had noticed after moving to the United States as a teenager from England. Americans seemed far more reticent than the British to talk openly about death. But Morrie was an exception. Weakened by disease and facing his own mortality, it became his mission to take death out of the shadows and into the light. And in doing so he helped instigate a cultural shift in our attitudes toward death.

“Our whole society’s issue surrounding death is something that prevents us from living,” says Dr. Katie Eastman, who founded Children’s Palliative Care Community in Anacortes, Wash. to support seriously ill and dying children and their families. “Morrie said, ‘You talk about death, you learn about life.’ If we don’t embrace the fact that life is finite, we forget how important it is to live.”

Eastman worked with her mentor Kubler-Ross, whose groundbreaking book laid out the five stages of grief. “She was way ahead of her time. We're finally getting to the place she tried to get us to," said Eastman.

Indeed, from the public and private sectors, there are new efforts to mainstream death into the American conversation. The Obama administration’s rule allowing Medicare to reimburse doctors for end-of-life conversations with their patients will take effect in January 2016. (Remember the talk of “death panels” when this was first proposed in 2009?) The Conversation Project, co-founded by journalist Ellen Goodman, is a grassroots attempt to get Americans to open up about their wishes for their final days. And Michael Hebb’s Death Over Dinner campaign invites people to put the subject on the table in a more literal way.

Hebb, a teaching fellow at the University of Washington, had long believed that gathering people around a table for dinner and conversation was one of the most effective vehicles for changing the world. He was on a train from Portland to Seattle in 2012 when he got the idea for Death Over Dinner. On that train, two strangers, both doctors, each shared a statistic that spurred him to action: The vast majority of personal bankruptcies are related to end-of-life expenses and 75 percent of Americans say they want to die at home but only 25 percent do.

Hebb then launched a national campaign called Let’s Have Dinner and Talk About Death. On his website, he provides articles and videos about death for hosts to review ahead of their dinner to facilitate conversation. To date, Hebb estimates people in 30 countries have broken bread at more than 100,000 meals to discuss issues surrounding death, including how to formalize end-of-life plans.

Last year, Eastman led a Death Over Dinner discussion at the Chandler Square Assisted Living facility in Anacortes. Attendees ranged in age from their 40s to their 90s and included residents as well as members of the community. “It was powerful, a way to compel people, rather than repel people on the topic of death," Eastman says. There is a real cultural fear that if you talk about death, you create it. That’s just not true. A group of us for many years has been trying to tell the public that death inspires. That’s why I jumped on Death Over Dinner.”

David Kessler, who wrote On Grief and Grieving with Kubler-Ross, lost his mother when he was 13. “Elisabeth really opened the door and said we can talk about death," says Kessler. “Then, so much technology evolved in the hospital at the end of life. Now, as baby boomers are aging, so many people have witnessed their parents connected to this impersonal technology system and they walk away saying ‘That wasn't the experience I wanted.’ That’s why personal stories like Morrie’s resonate.”

Kessler understands this firsthand. He was not permitted to visit his mother in the ICU on the day she died. “You had to be 14,” he says. “When I was allowed to visit her in the days leading to her death, it was for five minutes every two hours. Even at 13, I instinctively knew this wasn’t done well.”

Kessler was in Australia, giving talks about death and grief, when he heard about one village’s custom to honor the dead. “Everyone in the village the night the person died moved something obvious in their house or yard, a sofa or a lawn chair. Why? They want the person's family to wake up the next day, look out onto the world and see that everything has changed," Kessler says. "Contrast that to America, you wake up the next morning, your loved one has died and everything is the same.” That’s why he urges friends to call or pay a visit to those who suffered a loss six months or a year after the loss when they may need more support.

When we become more comfortable talking about and thinking about death, we can do a better job of helping those left behind.

In the conclusion to his TEDMED talk, Michael Hebb talks about his final days. “Since I was 17, I thought I’m going to die alone, slip off into the mountains. I don’t want to be a burden to myself or family." he says,  but then explains how his end of life wishes have changed:  “All I want is to be surrounded by my two loving daughters."

Says Hebb: “Looking at death has taught me how to live." It's as if he's channeling Morrie Schwartz.