Harley School Hospice
The current generation of young people often bears the label of being self-centered and entitled. But, digging a little deeper, you’ll find many kids who are ready and willing to make a difference in other people’s lives in action-oriented and compassionate ways. Often all they need to get started is a leader who sees their potential.
Ten years ago the Harley School in Rochester hired Bob Kane, not only to teach English, but for his proven ability to lead a hospice volunteer program for high school students. Having just received the highly coveted Leading Edge Award (given by the National Association of Independent Schools) for his forward-thinking curriculum at Rochester’s Norman Howard School that linked high schoolers with patients in Rochester’s Comfort Care Homes, Kane was eager to expand his ideas about the positive role young people could play in helping to provide physical and emotional support to terminally ill patients.
Harley’s year-long elective class is called Hospice. Students who take it receive full course credit by attending a daily class and completing a minimum of eight hours a month in hands-on fieldwork. When the program first began, nine students enrolled in it. A few years later, Kane estimates that about 75% of Harely seniors were signing up, mostly based on word-of-mouth recommendations from other students.
Working in a hospice setting is a world apart from a high school senior’s normal schedule, which is usually packed with activities, testing, college applications, and keeping current on social media. “Doing means something different in hospice,” Kane says. “Multitasking doesn’t work here.” He believes kids these days are caught on a hamster wheel of too many expectations versus not having enough real life skills and experiences. This type of volunteer work gives them a much-needed space where they can just be themselves. “All masks are gone with the dying,” Kane notes. “With their clients, students begin to realize it’s the little things that matter.” Students are often surprised to discover how meaningful it is to simply help someone brush their teeth or to sit with a bed-bound person and watch the snowflakes fall outside. Kids hunger for this connection, Kane asserts. “When a family member says to them, ‘You did so much for my mother; I’ll never forget you,’ it’s so powerful,” Kane adds. Not only that, but students begin to understand that what they do doesn’t matter as much as who they are. In a hospice setting they’re not living up to anything or anyone, they’re just being present. “When you’re with a person reaching the end of life, you become the ultimate tool to help them die peacefully,” he adds.
The first thing Kane does when the course begins in September is light a candle in front of the class and ask a student to come up and blow it out. “Once the breath is gone, that’s it,” Kane tells his students. This vivid example launches a class discussion about the fragility of life. Later, students then take a “death inventory,” covering all types of loss, including the passing of a beloved pet or a divorce. This can be emotional but Kane emphasizes to the teens, “It’s important to care for each other. You’re going to need each other’s support doing this kind of work.” Next he shows a film where the class actually sees several people die so they’ll have a sense of what to expect in the comfort care homes. The kids also begin shadowing people at the various comfort care homes. Shortly afterwards, they’re on their own, with plenty of supervision and support from their teacher.
Though Kane has a course syllabus, he views the reading and writing requirements as organic, changing slightly each year to meet the needs of the specific students enrolled in the class. There are always lectures, guest speakers, and readings (like Tuesdays with Morrie), and students are required to keep a journal about their experiences. There is a particular journal prompt that he assigns three times throughout the year, “Who are we? Where are we going? Why are we here?” that Kane’s students find especially meaningful as their answers usually change as the class progresses. Another important piece of the course is learning to breathe and meditate, which is crucial for several reasons, says Kane. It’s important for caregivers to recognize how breathing changes as a person gets closer to death and students need to learn how to clear their mind so when they’re sitting with an unresponsive person they’ll be able to completely tune in to their patient’s nonverbal cues. “Having a peaceful, focused intentionality is crucial to your work,” he tells the teens.
Additionally, the course teaches the teens how to physically take care of the people they work with. Kane observes that most kids today have had only fleeting experience with hospital settings where everything is so “medicalized” that it’s much harder to get close to the patient. Comfort care is different — more of a home setting. “You’re not seeing a disease or a chart number, you’re seeing a real person… Betty or Bill,” he says. Since New York State’s comfort care designation allows hospice volunteers to provide certain care tasks without a license, Kane has students use mannequins in the classroom to practice the different techniques they’ll be using when working with their terminally ill clients. This hands-on approach is part of what makes the experience so meaningful for the young people. “It’s unique and powerful to care for another human being who is at the end of his life,” Kane notes. “You’re not just dropping off flowers. The contact and touch during a time of mortality is transformative.”
Because he is also a nursing assistant with twenty years of experience in hospice care under his belt, Harley administrators and parents can rest reassured that Kane knows what he’s doing. There’s always a level of concern about students being exposed to contagious diseases, he acknowledges, but he addresses this by explaining universal precautions. “There’s also my track record,” he adds. “No student has ever gotten sick from working in Harley Hospice.” Though Kane’s never had a parent refuse to let their teen participate in the program, he concedes that it can be both tough and uncomfortable for mothers and fathers when their kids share stories of what they and their classmates are doing at the comfort care homes and what they’re talking about in class.
There’s a common myth that young people are fearless and don’t see death as being relevant to them, but that’s not true Kane says. Teens do worry about dying and they definitely realize that they aren’t infallible. Initially, they’re also fearful of saying or doing something wrong or of crying in front of their patients. Kane asks them why this would be a bad thing. “They’ll see that you’re mourning them,” he reassures the kids. Another reason that Harley Hospice has been so successful is that Kane is there for his students the way he teaches them to be there for those they’re working with. He always makes sure that anyone taking his class knows that he’s only a phone call away if they need him.
The class concludes with a Remembrance Day Ceremony, where students talk spontaneously about what their hospice experience meant to them. Kane says both he and the other adults present are often moved by the sudents’ honesty and heartfelt remarks. In a poignant parallel to what he’s taught so many kids over the years, he summarizes, “The real payoff for me is that I mattered in their lives. As a teacher that means the world…I don’t need to do anything else in life.”
Kane’s final Remembrance Day was June 2013, but he hasn’t left the end-of-life field or his work with young people. Following a class visit to Ireland where the youthful ambassadors of the Harley Hospice program shared their experiences with the dying, a school in Sligo decided to start a similar program. Kane accepted their invitation to join them, leaving the Harley Hospice program in the capable hands of Michael Brennan. For further information visit www.cmeeharley.org or contact Michael Brennan at
mb******@ha**********.org
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Sue Henninger is a freelance writer, a frequent contributor Rochester Area & Genesee Valley Parent Magazine. Contact her atwww.fingerlakeswriter.com
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