Harley’s Hospice Program, known globally as Hospice Corps, emerged from the vision of English teacher Bob Kane in 1999, while at The Norman Howard School, a private school in Rochester, New York, that fosters the academic growth of students with learning disabilities while promoting their development as respectful, responsible, resilient citizens. The school advances the understanding of learning disabilities and serves as a resource for the community. The course provides a link to comfort care homes, providing a rich network of knowledge/experience in the art and science of hospice/palliative care.“I taught children who often labeled themselves as rejects, failures,” Kane recalls. “So often it just seemed to me that putting these children into a nurturing, care-giving role would provide the empathetic tool to transform their destructive self-concept into something beautiful. So I drew upon my ongoing experience as a per diem hospice nursing assistant, and began a journey with my students to hospice, where they could authentically care for the dying and their loved ones, touching the hearts of others and, in so doing, touching their own.” It was a remarkable journey that led to Norman Howard School receiving a Leading Edge Award from the National Association of Independent Schools in 2003.
Today, the Hospice Program has grown to become an integral part of The Harley School. Hospice Corps is a one-year course that meets every day for 50 minutes. The class utilizes lecture, discussion, reflective journaling, ethical wills, movies/documentary films, speakers and fieldwork (four-hour shifts at local comfort care homes). The course provides a link to comfort care homes, providing a rich network of knowledge/experience in the art and science of hospice/palliative care. The classroom setting around a large table also provides the students with a safe, empathetic environment within which to discuss very sensitive topics to include how each student envisions their own death, and their death experiences to date. This whole environment is nurtured through the introduction of meditation. The meditation focuses on the breath, breathing in and breathing out. We focus on the breath in order to begin a practice of mindfulness, and being present with the breathing of the dying. Later meditations include a focus on compassion, forgiveness and visualizations. Research has shown that meditative practice increases grey matter in the insula, prefrontal cortex and hippocampus. Furthermore, this practice increases attention, compassion and empathy. In addition, the practice of meditation strengthens the immune system, lifts mood and reduces the release of stress hormones.
Gauguin’s three questions – “What are we? Where are we going? Why are we here?” – continue to be explored, while the students begin to slowly move from “I” to “thou.” Students focus on the dying process – how do we actually get dead? They watch films that document the dying processes of people with terminal diseases. The films are augmented with Deborah Sigrist’s practical/insightful book “Lighting The Path,” which discusses the dying process in detail.
After watching these individuals literally take their last breath, students are asked to connect their breath meditation to that experience, being present with their own breathing, their own sense of mortality. Students continue on with their personal awareness, doing exercises centered on loss and good/bad deaths. They imagine their own death in both a positive and negative way. Self-exploration becomes an ongoing process throughout the course via reflective journaling.Self-exploration becomes an ongoing process throughout the course via reflective journaling. Each student is expected to keep a journal, and responds to a series of prompts, reflects upon their individual work in the comfort care homes, and its application to their own lives.
Parallel with their class experience, students commence their fieldwork at the local comfort care homes, where their shifts are augmented by a regimen of nursing assistant training in the classroom. We have two beds, a medical mannequin, and all the medical equipment appropriate for hospice training. Students get hands-on training with catheters, ostomies, mouth care, bed baths, oxygen, feeding tubes, turning and positioning, vital signs, universal precautions, medications, and pain management. They practice mouth care, massage and turning and positioning on each other and on the medical mannequin. Training also includes the discussion of grief, bereavement across cultures, and emotional and psychosocial issues. Later on in the course, experts from the field speak to the students on wound care, dementia care, and various areas of nursing/social work practice.
As the students gain more experience in the field, the focus is turned more on the patient/resident. The “I” becomes “thou.” Students shadow with experienced volunteers and share their experiences back in class. This sharing opens up the world of “we” – the world of relationship building through trust, empathy, empathetic touch and compassionate communication. This is the fertile ground that nurtures the building of the decision making process while working through anxiety, fear and preconceptions. Students work with the dying person and their family members, developing interpersonal skills, active listening, and the ability to read the social cues of others.
Texts provided as the course evolves include: “Tuesdays With Morrie,” “Learning to Fall,” excerpts from various palliative nursing texts, Kornfield’s “Meditation For Beginners,” and Tolstoy’s “The Death of Ivan Ilyich.”
As students work with the dying, they often form deep bonds with the dying resident and their family members. When this happens, students often ask for a piece of clothing from the dying resident and a photo. The hospice class works together to design 9 x 9 quilt panels from the resident’s clothing, and the photo is computer scanned and printed on cloth. These, and any other memorabilia, are sewn into the hospice quilt in memoriam of the resident whose life they celebrate.
Students are asked near the end of the course to construct an Ethical Will. This is an instrument that documents those intangibles in life that have become life lessons for the student to bequeath to those they love. It is also an opportunity for the student to celebrate and honor lessons learned from others.
There is a final Ceremony of Remembrance where students stand and testify to their year of working with the dying. They share stories and emotions, and they receive a kata, a scarf from the teacher that signifies their transformation from student to teacher. (For many, this transference is rooted in their actually having taught hospice care to their peers in Belize and India.)