The time is 10:50 in the morning and a handful of private-school students gather in a lofty converted barn. They sit cross-legged on floor cushions encircling a candle. As the candle is lit and a bell is rung, silence falls over the room. Their common purpose is not to memorize dates, or study for college entrance exams—the purpose is mindfulness. The class is called “hospice,” and today, they are going to learn about death.
As a hospice social worker at Visiting Nurse Service of Rochester, mindfulness has been my passion and my saving grace—in my life as a parent, and at work as an educator and clinician. I have sought to learn how to be present with the messiness and the beauty of life, and share that knowledge with other hospice workers.
By choosing to be in the moment and not run away from that which frightens us most, I have learned that we can access life’s most transformative lessons to help us experience that moment more fully. Harley students enrolled in the hospice program have, at an unusually early age, the privilege to learn how to access the life-changing power of these painful moments.
Kathryn Lechner, a 2012 Harley School graduate, was a member of the hospice program, which trained her to serve as a volunteer at a local comfort care home. Lechner says the experience helped her grow as a person, and made her less selfish, more mature. It gave her a perspective that otherwise might have taken many years—even decades to develop.
“Everything was all about me, and when you go to the hospice house, your world is not just all about you,” Lechner says. “There are other things going on in the world, and people dying every day. ... It just changes you. I feel like it makes you stronger—because that’s huge, you know? I mean, people don’t usually deal with that.”
The hospice program is an elective course offered to 12th-graders. It was created in 2002 by award-winning educator Bob Kane. After the program’s inception, administrators of local comfort care homes responded. These two-bed residential homes trained students to provide hands-on care for their patients.
In recent years, Harley high school juniors also were afforded opportunities for field observation through their enrollment in H.A.N.D.S. (Helping and Nurturing Delivered by Students). The program is hosted by the Leo Center for Caring, a ten-bed hospice partnership between Visiting Nurse Service of Rochester and St. Ann’s Community. It provides symptom management support and care for patients at the end of life.
In addition to the Harley hospice program, Kane subsequently established the Center for Mindfulness and Empathy Education (CMEE) in 2011, funded by a Ford Foundation grant. The CMEE directs local and international outreach opportunities for the students of Harley School.
Current CMEE educator and hospice teacher James D’Amanda now runs Kane’s program. As a Harley graduate himself, D’Amanda was a natural candidate for the lessons his own life experiences had taught him. A traumatic brain injury and the illness of his brother made him consider the career change three years ago.
When D’Amanda interviewed for the program he was shown a Blue Sky Productions movie trailer from the documentary entitled, “Beginning with the End,” in which filmmaker Dave Marshall documents his two-year experience shadowing Harley hospice students. After seeing the clip, D’Amanda remembers his own tearfulness: “It was one of those times where you ask, ‘Why aren’t I living this way? What really speaks to my heart? Why aren’t I just doing that?’”
Debbie Sigrist, a registered nurse and hospice author whose career spans over twenty-five years, helps D’Amanda mentor these Harley students in the classroom and in their field observation at the Leo Center for Caring. Looking for their first-hand insight into the effects hospice care has on teens, I sat with them to talk.
James, based on your experience at Harley, can you speak to the role of a hospice teacher?
JD: To echo (program founder) Bob Kane, “The moment that a student comes to the hospice teacher’s door and needs that teacher to be there ... if that teacher is not able to be fully present to that student, this is the moment that this program should not exist—and it probably won’t.” During the 11-year evolution of the program, testimonials from students have shown that this can be an incredibly transformative and meaningful experience. Youth are often told, “You’re not really strong enough for this kind of work.” The truth is these students have full hearts just like anyone else.
They receive training in the basic nursing assistant techniques of comfort care, but the most important skill for any caregiver is basic human kindness.
The backdrop of this educational experience is a culture that is “death-averse.” How does that impact students?
JD: Although this course is an elective, death is not. By saying, “Yes, I want to take this course,” that lowers the façade that culture creates around death and dying. That is the key. Then it’s crossing the threshold of someone who is at the end of life. There is so much mystery surrounding that. It’s a beautiful thing that happens.
There are really only two things that we all share in common: We all are born, and we all will die. These are essential life experiences. I think that right away, students start to understand that from an intellectual place. Then, by doing the work, they really see the truth, the reality of death—that it’s a process. They start to see that the TV shows they’re watching, or things that they’re experiencing through the media ... maybe that’s not the way things really are.
So it’s like a slow peeling away of the veil through which our culture might lead us to perceive death? (D’Amanda agrees.)
There is a phrase called liminal space that means threshold, a term that James just used. Author Pema Chödrön describes this as groundlessness. It is the sense of unknown when someone is dying, a reminder of our ultimate powerlessness.
I’d like to discuss how we train students in mindfulness practices. Just to footnote the term, mindfulness is the art and science of relating to the present moment. Grounded in neuroscience, thousands of research articles are written to date on the efficacy of mindfulness in improving both physical and mental health.
James, how are you bringing mindfulness to the liminal space?
JD: I think the place to start is with the breath. I say to students, “We will be practicing mindfulness because it brings us into awareness of our own breath, so that we may pay attention, in a non-judgmental and open way, to the breath of the dying—the people who we are caring for.” It starts with doing the more internal work, and then it becomes something outward. I say to them, “If you’re coming from a place where you’re scattered, not really there with your own mind and your own body, you might miss opportunities to connect, opportunities to care, opportunities to understand life in a very profound way.”
So what do we do about it? What we do is we practice.
Mindfulness is a skill that, just like learning to play an instrument, takes a lot of work and a lot of time. One of the outcomes of mindfulness is greater empathy. There’s neuroscience about that. It allows us to really feel another person’s emotions. Just because I’ve had experience with loss doesn’t mean I know anything about your experience with loss. But I do believe that when we are in this place of relaxed alertness—just knowing what’s happening right now—that we really can experience true empathy. And that is, I believe, the most essential caregiver skill. It’s the hardest part, too.
[Students] don’t realize that what they have to bring is themselves. Just by being there tells the person that they matter, that their life means enough for another person to just be there, to just be present.
Debbie, how does mindfulness inform your ability to be with the dying?
DS: My work can be very busy and task-oriented. Before I know it I’ve become mindless rather than mindful. Because I’ve had some mindfulness-practice training, I try to return to the present moment. One way is to pause and slow down my breathing; pay attention to the inhalation and exhalation. We have a beautiful meditation room at the Leo Center for Caring that I might slip into, close the door and take in the silence. Over time, I’ve learned that kindness and compassion are probably what our patients and families will most remember. Unless I take these moments to pause throughout the workday, to recharge myself, then I may lose sight of these qualities.
So, with the skills of mindfulness and empathy, we can simply bring ourselves into the space of the room where someone is dying. The word courage comes from the Latin word cor, which means “heart.”
Let’s go back to the framework of adolescence—a time of teen angst and turmoil. There is so much groundlessness happening already in that context.
What happens when we find the courage to access the darkness inside ourselves—the darkness in that moment of liminal space? This is not about pushing away our fears and our pain. When we resist pain, we suffer. Rather, how do we do the opposite of what one would expect, and move toward the fearful places— move toward the unknown? How do we befriend it?
JD: We light a candle at the beginning of every hospice class as a physical representation of our proximity to death. One breath, and the candle is out. That’s a difficult thing to acknowledge if we don’t have the skills of mindfulness that allow us to be there.
When a student shares something that is difficult in class, you can see the strong emotions. Our initial reaction is to try to fix it. It’s a natural thing that we do. But it’s an opportunity for us to really look deeply—to really see it and be at peace with it, so that we can allow it to enter and go through us—not just fester inside us. That’s a challenge for me as a teacher every day—every moment: to allow it to be there. When the darkness is brought out, or whatever is there: pause. That pause is where the real learning happens.
So it’s holding back; it’s refraining from rescuing. It’s saying, “Let’s not bubble-wrap this experience.”
I want to introduce a metaphor. We’ve talked a lot about the darkness of the unknown, of suffering. I want to think now about night vision, which is defined as the ability to adaptively see in low-lit conditions. There are two components of night vision. Intensity range makes the most of the light you already have, in the same way that mindfulness maximizes the present moment. The second component of night vision is called spectral range, which adds new sources of light unseen to the human eye—like infrared, like ultraviolet. This requires a type of transformation— much like empathy. When both these conditions are met, we see better at night.
The darkness of suffering is both comprehended through mindfulness and enhanced with empathy. We learn to befriend it, not to push it away. We let the emotions run through us, as James described. We don’t try to rescue either ourselves or our students—or the dying, or their loved ones. Rather, we’re welcoming in, through this alchemy, new light sources.
DS: I see these times of darkness as a great opportunity to connect with someone by bearing witness to their suffering. As a nurse, there are things I can do to relieve physical pain, but being fully present and staying with the person can be a true source of light and comfort.
“I see these times of darkness as a great opportunity to connect with someone by bearing witness to their suffering. As a nurse, there are things I can do to relieve physical pain, but being fully present and staying with the person can be a true source of light and comfort.”
This is a quote from author Brené Brown: “Only when we are brave enough to explore the darkness will we discover the infinite power of our light.” It’s what James spoke of earlier: allowing the students to be in the dark, without turning on the light switch.
I would ask you: What does this night vision look like? When students have completed the program, are there any common themes?
DS: Since taking the course, I’ve heard students say they feel more knowledgeable and at ease watching their own family members cope with serious illness.
JD: Students go into their fields of study with the sense that they know more about life than a lot of other people because they’ve experienced death.
I ask the students, if I had the power to give you immortality, and you could live forever, would you take it? I have yet to hear any students, with any kind of confidence, say they would choose immortality. That happens just by being in hospice class. It’s unavoidable ... just like it’s inevitable to experience empathy when caring for someone who truly needs you. We all have it inside us, but it can develop and become a powerful life skill when we choose to be in situations where it’s required of us, where it’s impossible for it to not come up.
Your eyes will adjust to the dark.
JD: Exactly! It’s physiological.