"I slept and dreamt that life was joy I woke and saw that life was service. I acted and behold! Service was joy."
A thousand years before the Common Era, there were healing sanctuaries in Greece, Egypt and Rome, sometimes attached to temples, for attending to the dying. The modern hospice movement developed in the 1950s, in England, to assist the terminally ill live the last part of their lives more harmoniously, free from impersonal institutional and technological dominance.
Dying can certainly be terrifying and frightening, and the individual is better served in a respectful atmosphere that eases the 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 wards and rooms at St. Christopher's are filled with photographs, personal items, flowers, and plants. Patients pursue familiar interests and pleasures. There's an acceptance of the naturalness of dying, with the opportunity of families, including children and pets, to be with the patient. As the proverb says: "What comes from the heart touches the heart." Cicely Saunders passed away at age eighty-seven in the hospice she founded. Hospices are now in more than ninety countries.
Elisabeth Kubler-Ross, M.D., a psychiatrist, came from Zurich to the United States 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 accepting and understanding a little about death, in oneself and in relationship to serving the dying.
When Elisabeth first worked in New York, she was appalled that dying patients were too often shunned and even, at times, abused. "Nobody was honest with them."
She made it a point to sit with terminal patients, to listen. She wanted the patients to have the confidence to air their "inner-most concerns." Many hospice workers have told me that listening with patience and interest is the basis of all the services. Elisabeth wrote twenty books; perhaps she is most famous for her five stages of the dying process (which can be applied to other losses as well): denial, anger, bargaining, depression and acceptance. I find this useful, if it's not rigidly or dogmatically applied. I've found most helpful Elisabeth's advice that the dying need unconditional love.
Elisabeth was very generous about giving lectures and answering questions. I learned so much from small contacts with her. I realize how controversial she became in her exploring. Sometimes we get "spiritual egg" on our faces; we may appear ridiculous to others. I'm sure she would admit to going up mistaken paths, becoming overly dogmatic and quirky perhaps. We all are just such complicated, paradoxical mixtures of so-called good and bad, humans. Why want it to be any other way?
The hospice movement is now fairly widespread in the United States. It's a philosophy that enhances the quality of the dying person's life-not just a medical facility. Hospice is holistic, offering service to both the patient and the family. Whether at home or in a hospice facility, the patient has reasonable control over pain control, treatments and environment. There's respect of privacy, with a communicated feeling of personal goodness and dignity, open communication, an opening to the spiritual needs of the individual as he or she defines them. The 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. I was impressed by the warmth and "at home" environment the staff and patients were creating together.
The very open and ample kitchen 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 communal areas. I was reminded of Camus: "The great courage is still to gaze squarely at the light as it is at death."
I'm with a dying former student whose family has invited a few members of their church choir to go to the hospital to sing. She is barely aware of what's going on, but responds through her eyes-appreciative and soft-as the singing fills the room. She's holding her son's hand and slightly moving her lips to 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, skilled music therapists might sing fast, loud sounds that match the patient's. Then, there is a gradual slowing, softening of the music that calms the patient.
Also, there's 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 walk not into the night; we walk up toward the stars," they might sing.
Kate confers with a patient or the family to make sure their music will be 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 singing, the man opened his eyes suddenly and yelled: "Stop it! What the hell do you think you're doing here?"
We're always learning in hospice that good intentions are never enough. Kate says lullabies are requested the most.
It's always moving to see a dying person being able to forgive and let go of any held resentments, grudges. Many comment how "it's hard to forgive, but harder not to forgive." The forgiving person seems to soften and relax, somehow "empowered" whereas the person who is unforgiving and full of anger, appears hard and afflicted.
I visit a former teacher, Fr. "Pops" Silva, a Jesuit priest who is ninety-three years old and is in hospice. He tells me that he doesn't expect to live much longer; he still has that curious spirit and glint in his eyes. Even in his 80s, he was teaching that elegant bard of England, Shakespeare, in an Adult Program.
Pops is thoughtful, pensive. He's still savoring life, so lovable, full of simple devotion to God and interest in people. He's remembering sweet moments of his teaching life with me; he shows some annoyance at not quite remembering something. He says: "It's all going away."
He has this gigantic Shakespeare Concordance plunked regally on his mechanical bed. I muse how fortunate sharing our beds with our loves. I give Pops and his wheels a push to late morning misa, and give him our final hug good-bye, as he dies four months later.
Papa Fu Passes
This morning just before light, January 17, 2001, minutes to 6 AM, Papa Fu, my father-in-law, passed away. His family gathered around his deathbed, honoring a deeply felt belief that Papa's spirit would linger for some eight hours. We stayed talking to him and saying good-bye, adios, dear elegant long-limbed Chinese man, crying, touching him a last time, saying "I love you."
Some weeping, and certainly sadness, but Papa's serene face and the feeling of peace dominated. Happy that Papa wasn't suffering in the body, I bring two friends, Bhante and Ven. Dao Yuan, who are Buddhist monks, to be with Papa and comfort Ma and the family. I recall how Papa was so easy in his living, not bothering or making trouble for others. He was a gracious person, not "wanting to get something" from others. He seemed content and full within himself.
I would go visit with Papa after teaching, around 10 PM in the evening. At times, Papa would be breathing fitfully from a pipe in his throat, in beat with the Swoosh-Ahh-Swoosh-Ahh-Swoosh of a shiny new ventilator. I'd stand by his bed of tubes enmeshing his withered body. There are also moments of calm and acceptance, cradling his sweet dome in my palm, contemplating with him, holding and massaging his wrapped, slender hands, now needing restraints as he instinctively wanted to pull out the tubes invading his body. I'd put my face close to his and look into his loving eyes.
Papa enjoyed writing and reading, so I'd read some favorite texts out loud to him, sending feelings of well wishing to him, my desire that he be happy and tranquil. May his transitioning into the unknown Mystery be graceful, may he rest in a holy peace.
From Tilopa's Song to Naropa, I'd recite: "White clouds that drift through the sky changing shape constantly having no root, no foundation, no dwelling as changing patterns of thought that float through the sky of mind. When the formless expanse of awareness comes clearly into view, obsession with our thoughts ceases easily and naturally. Simply open into transparency with relaxed, natural grace. Allow the mind to be at peace in brilliant wakefulness. This limitless radiance cannot be contained." From St. Paul: "Love is patient; love is kind; love is not envious or boastful; it does not rejoice in wrongdoing, but rejoices in truth...Love bears all things, believes all things, hopes all, endures all. Love never ends." Sacred words for Papa Fu, sacred person.