Teaching Past The Taboo: Death Education in School

Dr. Jessica Zitter: Last summer, I was on vacation when I got a phone call from my friend Dawn over here. She said, “Hey, you know what? There’s this design firm called IDEO, and they have this online challenge called Reimagine the End of Life. Do you want to submit something with me? The catch is, it’s due in three hours.”

Okay, that gave me a little pause. But I thought, why not? I love Dawn, it’s raining outside, and reimagining the end of life is just about my favorite thing to do.

So I told Dawn about an article I had written that was in the queue to be published called “Death Ed.” It was kind of like sex ed, but about death.

Years earlier, to give a little background, I had taught two of my daughters’ classes in middle school and high school this sex ed class. It was a task that, honestly, I would have been very happy delegating, but it was a small school, and there was really no one else to do it.

Once I had done it, despite the giggles and the very serious discomfort, I realized that I just could never imagine having sent my daughters out into the world without knowing about roofies, body shaming, date rape, STDs and unwanted pregnancy.

Okay, but Death Ed?

Well, death, as we all know in this room, is a lot like sex. It’s a taboo subject that makes us squeamish, so we avoid it. And like sex, if you aren’t prepared for the end of life, it can go very badly.

Dawn was really excited about this idea because she had taught a class to high school students on prenatal education, and she had also seen that knowledge is power when it comes to the body and health.

Both of us have a lot of experience talking about death with teenagers, namely our own kids. In fact, a few months ago, my daughter Sasha said to me, “Mom, can we have, like, one Shabbat dinner without talking about death?”

So it really was an idea that felt intuitively right to both of us. We did the ultimate college move, and we got this thing in with literally minutes to spare.

We are proud to say that, of the 299 submissions, Death Education was selected as one of the top 10 ideas.

So let’s talk about sex ed. It works.

When it was first introduced as a concept in the late 1800s, people said, “What? Talk to teenagers about sex? You’re just going to make them go out and have more sex, or you’re going to make them socially depraved.”

But that didn’t happen. As these kids learned about their bodies, they started to make better decisions, and rates of sexually transmitted diseases and unwanted pregnancies plummeted.

Soon, many states said this should be required teaching at the high school level.

Unfortunately, in the 1990s, some states morphed their sex education programs into something called abstinence-only-until-marriage sex education. You can imagine how that went.

In school systems where they don’t acknowledge that sex is a part of life, things get bad. There was, again, a resurgence of STDs and unwanted pregnancies.

Okay, so what about death?

Death is also a part of life that we don’t want to acknowledge. But like sex, it’s happening around us all the time.

Here’s something interesting. More than three decades of palliative care research, and probably even more, have shown us clearly that when people know more about the end of life, they live and they die better.

And yet, in these modern times, I think everyone in this room will agree that the majority of us know very little about death. Whatever we do know, we learn in snippets from TV shows that are completely unrealistic.

Now, it wasn’t always this way. For the majority of human history, people knew how to manage their dying loved ones. When they were sick and dying, they were cared for in the home. After they died, they were laid out in the parlor.

Death was expected. It was accepted. It was prepared for.

But things really changed in the 1930s. At that time, two professors of industrial hygiene at the Harvard School of Public Health, using the motor of a vacuum cleaner, created a machine that went on to save many thousands of young people and older people from death from polio.

We knew it then as the iron lung. We now know it, in its new iteration, as the modern mechanical ventilator, which we find in intensive care units around the world.

At the same time, on the battlefields of World War II and Korea, doctors were learning how to measure pressure inside vessels using fancy catheters, and how to do resuscitation with fluids, volume, blood and plasma to save many thousands of soldiers from death from hemorrhage, shock and infection. These were people who would certainly have died on the battlefields.

So we were being saved by technology, and it felt like a miracle. We began to believe in these machines.

If they could save young children and soldiers, maybe they could save us all. Maybe they could save the old and the ill. Maybe they could save the dying.

The result is something I call the end-of-life conveyor belt, which I see every day in the intensive care unit.

It’s this phenomenon where patients who are truly approaching the end of life get plugged into a series of machines and submitted to a series of technologies, treatments and protocols that compensate for all of their organs as they begin to fail.

The final stop is ventilator facilities, where people are actually surgically connected to these machines. They frequently have their arms tied down. They are frequently in pain and confused.

Honestly, if we measured it, most of them probably never would have realized what they were actually submitting themselves to or signing up for.

This is a rising public health crisis of extraordinary proportion, and it’s not what people want. It’s certainly not what I want or what Dawn wants. Right?

Dr. Dawn Gross: No, it’s not.

Okay, but teaching death to high school students was pretty terrifying.

We looked to see what was going on out there. What had other people done? Honestly, we found one program in upstate New York 25 years ago.

This isn’t being taught, according to my Google searches. Maybe someone else knows about other programs.

And what if we upset these kids? These are kids who go to school with our kids. These were parents who were co-parents in a school with us.

What if people got angry? What if someone became traumatized and ran out of the room screaming? Would we incite depression in kids?

But we were propelled forward by our commitment to educate, much as we had done with sex education.

We wanted to enable people to make decisions based on knowledge, rather than fear or fantasy. Denying reality never works, whether it’s about sex or about death.

The antidote to denial is education. Death education.

So we went for it.

We approached two bold, brave high schools in the Bay Area that happened to have two of our children enrolled in them, and we asked if they would be willing to allow us to pilot Death Ed with their students.

Fortunately, they said yes.

We then did what any science educator would do. We created an advisory panel to tell us how to do this.

That advisory panel was made up of our teenagers and their friends. We said, “How do we make sure what we’re going to teach is actually successful?”

They said three things.

One, make sure you do everything as interactively as possible. Two, use candy wherever possible. And three, it never hurts to use movies.

So we did.

We started day one with an exercise that involved candy and an activity.

We told the students that each color of candy they were going to be handed represented a possible relationship in which they may have already experienced a death.

Number one, red: a parent or sibling. We asked them, if that was true for them, to put it in the glass jar.

Number two, orange: if they had lost a grandparent, aunt, uncle or cousin, put it in the jar.

Number three, yellow: if they had lost, say, a teacher, counselor or coach, put it in the jar.

Number four, green: a pet. Who here has not lost a pet? Put one in the jar. You can eat all the other green ones. You can keep them.

Fifth, purple: someone in the stratosphere, someone who is an icon for us in the public eye. If someone died who meant a lot to you or changed your world, put it in the jar. Then feel free to eat the rest.

Which they did.

We then held up the jar after it had gone around the room and every student had added their appropriate colored candies.

We said, “What do you notice?”

In every single classroom, every time, the students noticed two things.

First, there were more candies in the jar than there were people in the room. Second, every single color was in the jar.

Our job of creating context was done.

They realized that death had already touched them and was likely to touch them again. They were present with us now.

The question was, what do we know about it? We know it happens. Now we care. What do we know about it? Where do we learn anything?

The media.

So we decided to show a video, something they were eerily familiar with: one of their favorite programs, Grey’s Anatomy.

In this particular episode, the heroine of the show actually dies. She dies right before our eyes, and then all the heroics of that medical conveyor belt come out in all their magical glory and resurrect her. She comes back to life.

By the end of the episode, she’s actually able to sit up by herself in her hospital room, look at Dr. McDreamy in the corner, who’s smiling, and they coyly say, “Hey.”

The students were captivated. They loved it.

When we asked, “Tell us about what you just saw,” they said, “Oh, no, no. We know that’s not real. We know that’s made up.”

Okay, good. So what is real?

They couldn’t tell us.

So we offered a different clip. This one was taken from the documentary Extremis, featuring our own Jessica Zitter in her hospital intensive care unit.

We follow patients, families and doctors who are facing very real, life-threatening illnesses. Most of the patients are either not in a position to answer for themselves what matters most, or their families have never talked about it and don’t know how to answer on their behalf.

The students were equally enraptured while watching this video. But instead of laughter, what we watched them do was cry.

We approached some of them afterward and said, “Are you okay? Is it okay that we did that?”

They reassured us that the tears were important. In fact, the fact that they were crying told us we should be talking about it.

In the intervening days between class one and class two, while Jessica and I were recovering from the pure exhaustion of teaching this course, we were also terrified.

We realized we had left these students in a place of caring about this, but we hadn’t taught them how to talk about it.

We were worried about how they would come back, or whether they would come back, for day two.

Fortunately, the only phone calls the schools received were ones of gratitude in the interim, saying, “Thank you for being brave enough to teach this.”

Students told us, excuse me, teachers told us that students had raised conversations with them that they were aware of but had never spoken about publicly, or in the depth that they were now doing. They were grateful.

So along came day two. Our work was cut out for us.

It was time to teach them how to discover what matters most to them and then how to communicate it.

We did that through a game that’s actually on every one of your tables called Go Wish.

This video is going to demonstrate students playing in real time during the class.

[Video plays]

Student: This is what you want when you’re about to die.

I’m, like, connecting all of the cards that are related to family and friends together. I put those down, and those are the most important. Like you said, just everything, just being with my family.

[Video ends]

Dr. Dawn Gross: What became very clear as these students eagerly played this game was that they could talk about this.

Even though it was in the context of imagining they were dying, what they realized was that it was actually about what mattered most to them right here, right now, while they were very much alive.

As we did exit surveys to see how it was for them to experience Death Ed, fortunately, the vast majority said they were grateful they took it.

When they gave us critical feedback about what was effective, our advisory panel was spot-on.

Number one, they loved the interactive things, like the Go Wish game. Number two, candy is always good. And three, they loved the movies.

So we’re off to a good start.

Jess, I’m wondering, in the last few moments, are you ready to play a little round of Go Wish with me?

Dr. Jessica Zitter: I sure am, and I happen to have my favorite card with me.

Dr. Dawn Gross: What perfect timing.

Okay, great. Jess, it says that something important to you is to be kept clean. Can you tell me how I could support you in being kept clean?

Dr. Jessica Zitter: I really want my family and my friends to be able to lie down next to me in my bed and be next to me, and not smell something bad.

I want my sheets to be clean. I want myself to be clean. That’s important to me.

Dr. Dawn Gross: What I’m hearing you say is that if you’re smelling clean and feeling clean, then your family will want to be with you.

Dr. Jessica Zitter: Yes.

Dr. Dawn Gross: And I’m imagining you want your family with you now, not just waiting until you’re on your deathbed. Is that right?

Dr. Jessica Zitter: Yeah. We love to be together.

Dr. Dawn Gross: Go Wish, and talking about what matters most, is about helping us uncover these things right now, while we’re very much alive, so we can all support each other in living our lives most fully.

Jess, what’s the bottom line?

Dr. Jessica Zitter: The bottom line is that over the last century, we have forgotten how to die, and for that, we’re suffering greatly.

Death Ed is our attempt to bring some age-old wisdom back into the classroom so the next generation can live their lives fully, all the way to the end.