“I slept and dreamed that life was joy. I woke up and saw that life was service. I acted and lo! Service was joy.”
A thousand years before the Common Era, there were healing shrines in Greece, Egypt, and Rome, sometimes attached to temples, to care for the dying. The modern hospice movement developed in the 1950s in England to help the terminally ill live the latter part of their lives more harmoniously, free from impersonal technological and institutional dominance.
Certainly, dying can be frightening and frightening, and the person feels better in a respectful atmosphere that relieves emotional, social, physical, and spiritual stress. The most influential model of modern hospice care is St. Christopher’s Hospice in Sydenham, England, founded in 1967 by Dr. Cicely Saunders. She was its medical director from 1967 to 1985. The halls and rooms of St. Christopher’s are filled with photographs, personal items, flowers and plants. Patients pursue family interests and pleasures. There is an acceptance of the naturalness of dying, with the opportunity for families, including children and pets, to be with the patient. As the proverb says: “What comes from the heart touches the heart.” Cicely Saunders died at the age of eighty-seven in the hospice she founded. Hospices are now in more than ninety countries.
Elisabeth Kubler-Ross, MD, psychiatrist, came to the United States from Zurich in 1958. She passed away in 2004. Her writings are a great gift to those who work in hospice and to anyone interested in establishing one’s inner process of acceptance and understanding a little death, in oneself and in relation to the service to the dying.
When Elisabeth first worked in New York, she was horrified that dying patients were too often rejected and sometimes even abused. “No one was honest with them.”
She made sure to sit with terminal patients, to listen. She wanted patients to have the confidence to express her “innermost concerns.” Many hospice workers have told me that listening with patience and concern is the foundation of all services. Elisabeth wrote twenty books; she is perhaps most famous for her five stages of the dying process (which can also be applied to other losses): denial, anger, bargaining, depression, and acceptance. I find this useful, if it is not applied rigidly or dogmatically. I have found Elisabeth’s advice that the dying need unconditional love very helpful.
Elisabeth was very generous in giving lectures and answering questions. I learned a lot from small contacts with her. I realize how controversial she became in exploring her. Sometimes we get “spiritual egg” on her face; we can appear ridiculous to others. I’m sure she would admit to going down the wrong paths, becoming too opinionated and perhaps extravagant. We are all such complicated and paradoxical mixtures of so-called good and bad humans. Why want her to be any other way?
The hospice movement is now quite widespread in the United States. It is a philosophy that improves the quality of life of the dying person, not just a medical center. Hospice is holistic and offers service to both the patient and the family. Whether at home or in hospice, the patient has reasonable control over pain control, treatments, and the environment. There is respect for privacy, with a communicated feeling of kindness and personal dignity, open communication, an openness to the spiritual needs of the individual as he or she defines them. Caregivers review and revise, if necessary, advance directives, as well as address financial and practical concerns of the patient and family.
In 2002, my friend Ken Ireland invited me to visit Maitri, a hospice for AIDS patients in San Francisco. Ken helped start this hospice with Issan Dorsey. He impressed me with the warmth and “at home” atmosphere that the staff and patients were creating together.
The kitchen, very open and airy, had a signed and framed photo of Elizabeth Taylor, who had visited and encouraged the residents.
Golden light dappled the fresh green plants in the hallways and common areas. I remembered Camus: “The great courage is still to face the light as it is to death.”
I am with a dying former student whose family invited some members of his church choir to come to the hospital to sing. He’s barely aware of what’s going on, but he responds through his eyes, grateful and soft, as song fills the room. She holds her son’s hand and slightly moves her lips to the rhythm of the melodies.
The National Center for Music Therapy in End-of-Life Care is based at the State University of New York at New Paltz. Perhaps, for a patient whose breathing is very labored, trained music therapists could sing loud, rapid sounds that match the patient’s. Then there is a gradual slowing down, a softening of the music that calms the patient.
Also, there is a movement called “Threshold Choirs”, which was started in the San Francisco Bay Area by Kate Munger. Choirs are invited into hospices, hospital rooms, and homes where they sing to the dying, who may or may not be conscious.
“We don’t walk into the night; we walk toward the stars,” they might sing.
Kate talks to a patient or family to make sure her music is welcome. She tells the story of a nurse who wanted her group to sing for a man who was drifting in and out of consciousness. During the chant, the man suddenly widened his eyes and shouted, “Enough! What the hell do you think you’re doing here?”
We are always learning in hospice that good intentions are never enough. Kate says that lullabies are the most requested.
It is always moving to see a dying person be able to forgive and let go of any resentments or grudges they hold. Many comment that “it is difficult to forgive, but more difficult not to forgive.” The forgiving person seems to soften and relax, somehow “empowered,” while the unforgiving person full of anger seems hard and grieving.
I visit a former teacher, Fr. “Pops” Silva, a Jesuit priest who is ninety-three years old and is in a hospice. He tells me that he doesn’t expect to live much longer; he still has that curious spirit and sparkle in his eyes. Even at 80, he was teaching that elegant bard from England, Shakespeare, in an adult program.
Pops is thoughtful, thoughtful. He is still savoring life, so kind, full of simple devotion to God and concern for people. He is remembering sweet moments of his teaching life with me; he shows some annoyance at not remembering something. He says, “Everything is leaving.”
He has this gigantic Shakespeare Concordance sitting majestically on his mechanical bed. I think how lucky it is to share our beds with our loves. I give Pops and his wheels a push to morning mass and give him our last hug goodbye, as he dies four months later.
Papa Fu Passes
This morning, just before dawn, January 17, 2001, minutes to 6 AM, Papa Fu, my father-in-law, passed away. His family gathered around his deathbed, honoring the deeply felt belief that Papa’s spirit would linger for about eight hours. We stayed talking to him and saying goodbye, goodbye, elegant and long-legged Chinaman dear, crying, touching him for the last time, saying “I love you.”
Some crying, and certainly sadness, but it dominated Dad’s serene face and the feeling of peace. Happy that dad was not suffering in the body, she brought two friends, Bhante and Ven. Dao Yuan, who are Buddhist monks, to be with Dad and comfort Mom and the family. I remember how easy it was to live dad, without disturbing or causing problems to others. She was a kind person, who did not “get something” from others. He seemed content and full within himself.
I was going to visit dad after teaching, around 10 p.m. Sometimes Dad breathed raggedly through a tube in his throat, to the swoosh-ahh-swoosh-ahh-swoosh of a shiny new fan. He would stand me by the bed of his tubes entangling his withered body. There are also moments of calm and acceptance, cradling the sweet dome of him in my palm, gazing with him, holding and massaging his slender, wrapped hands, now in need of restraint as I instinctively wanted to draw the tubes invading his body. I would put my face close to his and look into his loving eyes.
Dad liked to write and read, so I would read some of his favorite texts aloud to him, sending him good wishes, my wish for him to be happy and calm. May his transition to the unknown Mystery be graceful, may he rest in holy peace.
From the Song of Tilopa to Naropa, I would recite: “White clouds drifting across the sky constantly changing form rootless, groundless, homeless as changing patterns of thought float through the sky of the mind. When the formless expands from consciousness is seen clearly, the obsession with our thoughts ceases easily and naturally. Simply open to transparency with natural, relaxed grace. Allow the mind to be at peace in brilliant wakefulness. This limitless radiance cannot be contained “. From Saint Paul: “Love is patient; love is kind; love is not envious or boastful; it does not rejoice in wickedness, but rejoices in the truth… Love bears all things, believes all things, It waits for everything, it supports everything. Love never ends.” Holy words for Papa Fu, holy person.