Scared to Death of Death Education
Death is a lot like sex.
August 6, 2018
Death is a part of life that we don’t want to acknowledge. But it’s happening around us all the time.
And here’s something interesting:
More than three decades of palliative care research have shown us clearly that when people know more about the end of life, they live and die better.
And yet, the majority of us know very little about death. Whatever we do know, we often learn in snippets from television shows that are completely unrealistic.
Why Are We Bad at Dealing With Death?
It wasn’t always this way.
For the majority of human history, people knew how to care for their dying loved ones. When people were sick and dying, they were cared for at home. After they died, they were laid out in the parlor.
Death was expected. It was accepted. It was prepared for.
But things began to change in the 1930s. At that time, two professors of industrial hygiene at the Harvard School of Public Health used the motor of a vacuum cleaner to create a machine that went on to save many thousands of young and older people from death from polio.
[The first “iron lung” mechanical respirator. Source: Wikimedia Commons]
It was known as the “iron lung.” Today, in its new iteration, it is known as the modern mechanical ventilator and can be found in intensive care units around the world.
Around the same time, on the battlefields of World War II and the Korean War, doctors were learning how to measure pressure inside blood vessels using catheters, perform resuscitation with fluids, blood and plasma, and save thousands of soldiers from hemorrhage, shock and infection.
These were people who would almost certainly have died on the battlefield.
Technology began saving lives, and it felt like a miracle. Many 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, the ill and the dying.
[image The first “iron lung” mechanical respirator. Source: Wikimedia Commons]]
The End-of-Life Conveyor Belt
The result is something called the end-of-life conveyor belt, which can be seen every day in the intensive care unit.
[The “End-of-Life Conveyor Belt.” Source: Jessica Zitter, MD, MPH]
This is what happens when patients who are approaching the end of life are connected to a series of machines and subjected to technologies, treatments and protocols that compensate for their organs as they begin to fail.
The final stop can be a ventilator facility, where people are surgically connected to these machines.
Their arms are frequently tied down. They may be in pain, confused and unaware of what they were agreeing to or what the experience would entail.
This is a growing public health crisis of extraordinary proportions. And it’s not what people want.
Denying this reality does not solve the problem. The antidote is education.
Death education can enable people to make decisions based on knowledge rather than fear or fantasy.
“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.” Jessica N. Zitter, MD, MPH
[image “End-of-Life” Conveyor Belt. Source: Jessica Zitter, MD, MPH]
Are We Currently Teaching Death Ed?
No. The reality is that death education isn’t being widely taught. Drs. Dawn Gross and Jessica Zitter found only one program that had existed in upstate New York some 25 years earlier.
So how do you create a death education curriculum for high school students? Where do you start?
What if talking about death deeply upsets students? What if people get angry? What if someone becomes so distressed that they run out of the room? Could discussing death openly incite depression in young people?
The Death Ed Experiment
Drs. Gross and Zitter approached two high schools in the Bay Area and asked if they would be willing to pilot a death education program with their students.
Both schools said yes.
To prepare, they did what any science educator would do: They created an advisory panel to tell them how to approach the course. That panel was made up of their teenage daughters and their friends.
They asked, “How do we make sure what we’re going to teach is actually successful?”
The students suggested three straightforward things:
- Use candy wherever possible.
- Remember that movies never hurt.
- Make the experience as interactive as possible.
Part 1: Death and Candy
Day one began with an interactive exercise involving candy.
Each student was given colored candy and asked to place the appropriate pieces in a jar if the following experiences applied to them:
- Red: The death of a parent or sibling
- Orange: The death of a grandparent, aunt, uncle or cousin
- Yellow: The death of a teacher, counselor or coach
- Green: The death of a pet
- Purple: The death of an admired public figure
Once every student had added the appropriate candies, they were asked what they noticed.
In every classroom, the students observed two things.
First, there were more candies in the jar than there were people in the room. Second, every color was represented.
They realized that death had already touched their lives and was likely to touch them again.
The exercise established why learning about death mattered. The next step was to uncover what the students already knew.
Part 2: Death and Movies
The students were shown two videos.
The first was from something they knew well: one of their favorite television programs, Grey’s Anatomy.
In this particular episode, the show’s heroine dies. All the heroics of the medical conveyor belt appear in their magical glory and resurrect her. She comes back to life.
By the end of the episode, she is able to sit up by herself in her hospital room, look at Dr. McDreamy smiling in the corner, and coyly say, “Hey.”
The students were captivated. They loved it.
When asked what they had seen, they responded, “Oh no, we know that’s not real. We know that’s made up.”
So what is real?
They couldn’t say.
The students were then shown a clip from the documentary Extremis, which features Dr. Jessica Zitter in her hospital’s intensive care unit.
The documentary follows patients, doctors and families facing very real, life-threatening illnesses. Many of the patients are unable to communicate what matters most to them, while their families have never discussed their wishes and do not know how to answer on their behalf.
The students were equally absorbed by this video. But instead of laughing, they cried.
When approached afterward and asked, “Are you okay? Was it okay for you to see that?” they said yes. They explained that the tears were important. In fact, the fact that they were crying indicated that this was something they should be discussing.
“In the days between class one and class two, we were terrified because we realized we had left these students in a place of caring about talking about death, but we hadn’t taught them how to. We were worried about how they would come back, or if they would come back, for day two.” Dawn Gross, MD, PhD
Fortunately, the only phone calls the schools received were expressions of gratitude from people thanking them for being brave enough to teach the course.
Teachers reported that students had initiated conversations about experiences they had previously acknowledged but never discussed publicly or in such depth.
They were grateful.
Part 3: Interactive Discussion
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Then came day two.
It was time for the students to discover what mattered most to them when thinking about life and death, and to learn how to communicate it.
To do that, they played a game called Go Wish.
[Students play Go Wish in the classroom. Source: EndWellProject.org]
As the students played, it became clear that they were able to talk about these subjects.
Although the game asked them to imagine that they were dying, they realized that the conversation was really about what mattered most to them right here and now, while they were very much alive.
In exit surveys, the vast majority of students said they were grateful they had taken Death Ed.
Talking about what matters most when it comes to life and death can help us uncover those priorities now, while we are alive, so we can live fully all the way to the end.
