How do you teach end-of-life care?

In Rochester, N.Y., a hospice class teaches high school students how to care for people who are actively dying

May 1, 2014 3:30PM ET

by Timothy Bella @TimBella

The first time Emily Hanss volunteered at her local hospice facility in Rochester, N.Y., she was afraid she’d hurt her patient.

The patient had just suffered a stroke and couldn’t form words. With half of the woman’s body totally numb, Hanss, then a senior at Rochester’s The Harley School, was uncomfortable. She had found peace after her grandfather passed away suddenly six years prior, but she hadn’t dealt with death much when she first entered the class in September 2012.

"I didn’t know what to say because she couldn’t communicate," said Hanss, now a 19-year-old freshman at SUNY Geneseo. "But after I got to know her and she got to know my face, I could tell she was comfortable being around me."

Hanss’ story is just one profiled in "Beginning With The End," a documentary that follows a group of teenagers taking a hospice class – and their teacher, Bob Kane – as they learn how to provide care and support for those who are in the process of dying.

“The whole thing about the program was to inject the completeness of death by dealing with these strangers who are actively dying,” said Kane. “But it’s also about [the students] dealing with their own lives and hopes and potentials.”

As America Tonight covered in February’s “Aging America” series, this country desperately needs more caregivers for the elderly. Almost one in five Americans will be 65 or over by 2030, and the number of Americans older than 85 is expected to triple in the next 30 years. Somewhere between 1.5 million to 1.6 million patients received hospice care in the U.S. in 2012, with at least 37 percent of patients spending one month or more in hospice care.

So, is what’s happening in a high school in upstate New York one sustainable idea to help treat an elderly population that’s expected to mushroom for decades to come? For Hanss, the answer is a resounding yes.

“Through the class, we learned that everyone who is aging was young once,” Hanss said. “We all have fears. We all have people we love and things that mean a lot to us. It doesn’t matter what your age is.”

Class is in session

Bob Kane stands in front of his students at The Harley School in Rochester, N.Y., on one of the first days of his hospice class.

Courtesy: Beginning With The End

Bob Kane would tell his students the same thing during the course of the hospice class: “You will be in front of people whose lives are disappearing before your very eyes – and they know it.”

It has been 10 years since Kane was brought in to The Harley School to be not only an English teacher, but to also lead a yearlong elective class simply known as “Hospice.” The premise was straightforward: a daily class with a minimum of eight hours a month of fieldwork outside the classroom. What started as a class with just a handful of students has since morphed into the most popular class at the school.

At the start of the first class of the semester, Kane lights a candle. One by one, he asks each student to come to the front of the classroom and blow it out. Then, he asks them two things.

Why would you choose to come here?

What kind of experience have you had with death?

One by one, the students – the nerds, the jocks, the popular crew and representatives from seemingly every social group – began to share their experiences.

You will be in front of people whose lives are disappearing before your very eyes – and they know it.

Bob Kane

Whether it’s a parent, sibling, grandparent or even pet, the stories of everyone’s “death inventory,” and these teenagers’ understanding of death’s finality, are on display through these initial, sometimes awkward interactions.

“You’ll see these empathetic reactions, as clumsy as they may be, they happen,” said Kane. “That trigger authenticates everything around the table. All of a sudden, it’s OK to do this because what happens in this room stays with us in this room. Once a student shares that piece of their life, it gives permission for another student to do so.”

Ashley Sands remembers sitting in Kane’s class in the fall of 2006. Like Hanss, Sands remembered the experience, while deep and meaningful, as nerve-wracking starting off.

“You’re still scared your second time. You’re still scared your third time. You’re still scared your sixth time,” Sands said. “But slowly, you become more comfortable and you learn how to introduce yourself to somebody who’s dying, who might not be coherent, or somebody who is in immense pain. You don’t want to hurt them, but you learn through touch that you can ease their pain and you can slow their breathing. You can calm them.”

Documenting the change

Students in the hospice class practice tasks they regularly do while caring for elderly patients.

Courtesy: Beginning With The End

After her own experience, Sands and filmmaker David Marshall followed the inner-workings of the hospice class, profiling the students as they changed with each new experience. In March, the film premiered at South By Southwest in Austin to rave reviews.

“It’s a process that creates great society, creates care and compassion, and those are the people you want in your world,” Marshall said. “That’s the world you want to live in, and this little program in upstate New York is the seed of that kind of society.”

Marshall said that he hopes the story of Kane’s hospice class and the experiences of the students helps advance the larger conversation concerning how the U.S. cares for and treats an elderly population that’s actively dying.

“I think we’re on the right road, but I just don’t know whether we’ve seen all the bumps just yet,” Marshall said. “I think it’s a bumpy road.”

Kane hopes similar hospice initiatives involving high school students can be implemented. He said groups and schools from Maine to Hawaii are interested

“It can happen anywhere,” said Kane, “and I believe that because it happened here.”