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Death is also a gift: the grace of hospice

“I slept and dreamed that life was joy. I woke up and saw that life was service. I acted and lo! Service was joy.”

-Rabindranath Tagore

A thousand years before the Common Era, there were healing sanctuaries in Greece, Egypt, and Rome, sometimes attached to temples, to tend to 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 domination.

Certainly dying can be terrifying and frightening, and the person feels best 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 passed away at the age of eighty-seven in the hospice she founded. Hospices are now in over 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 hospice workers and anyone interested in establishing their own internal acceptance process 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 turned away 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 patient and caring listening 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 be applied to other losses as well): denial, anger, bargaining, depression, and acceptance. I find this helpful, if not applied rigidly or dogmatically. I have found Elisabeth’s advice that dying people need unconditional love very helpful.

Elisabeth was very generous in lecturing 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 may appear ridiculous to others. I’m sure she would admit to going down the wrong path, becoming overly dogmatic and perhaps extravagant. We are all such complicated and paradoxical mixes 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 personal goodness and 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, an AIDS hospice 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 spacious, held a signed and framed photo of Elizabeth Taylor, who had visited and encouraged the residents.

Golden light splashed on the fresh green plants in the hallways and common areas. I remembered Camus: “Great courage is still facing the light as it is facing death.”

I am with a dying alumnus whose family invited some members of their church choir to come to the hospital to sing. He’s barely aware of what’s happening, but he responds through his eyes, grateful and soft, as the singing fills the room. She holds her son’s hand and moves her lips slightly 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, fast sounds to 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 to hospices, hospital rooms, and homes where they sing for the dying, who may or may not be conscious.

“We don’t walk into the night; we walk into 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 drifted in and out of consciousness. During the chant, the man’s eyes widened and he yelled, “Enough! What the hell do you think you’re doing here?”

We are always learning at the hospice that good intentions are never enough. Kate says lullabies are the most requested.

It is always moving to see a dying person be able to forgive and let go of any resentment or grudge they may have. 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 who is filled with anger seems tough and grief-stricken.

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 twinkle in his eye. Even at 80, he was teaching that elegant bard from England, Shakespeare, in a program for adults.

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 for not remembering something. He says: “Everything is leaving.”

He has this gigantic Shakespearean Concordance perched regally on his mechanical bed. I think how lucky we are to share our beds with our loves. I give Pops and his wheels a push until morning mass and give him our last goodbye hug 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, dear elegant and long-legged Chinese, crying, touching him for the last time, saying “I love you”.

Some crying, and certainly sadness, but dad’s serene face and feeling of peace dominated. Happy that Dad was not suffering in body, she brought two friends, Bhante and Ven. Dao Yuan, who are Buddhist monks, to be with dad and comfort mom and family. I remember how easy it was to live dad, without bothering or causing trouble for others. She was a kind person, who did not “want to get something” from others. He seemed content and full within himself.

I was going to visit dad after teaching, around 10 pm. Sometimes Dad would gasp through a tube in his throat, to the Swoosh-Ahh-Swoosh-Ahh-Swoosh of a shiny new fan. He would stand next to his bed of tubes entangling his withered body. There are also moments of calm and acceptance, cradling his sweet dome in my palm, gazing with him, holding and massaging his slender, wrapped hands, now in need of restraint as I instinctively wanted to pull out the tubes encroaching on 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 aloud to him some of his favorite texts, sending him good wishes, my wish for him to be happy and calm. May his transition into the unknown Mystery be graceful, may he rest in holy peace.

From Tilopa’s Song to Naropa, he would recite: “White clouds moving across the sky constantly changing shape rootless, groundless, dwellingless as shifting thought patterns float across the sky of the mind. When the formless expands awareness sees clearly, obsession with our thoughts ceases easily and naturally Just open to transparency with a 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 neither envious nor boastful; it does not rejoice in evil, but rejoices in the truth… Love endures everything, believes everything, everything is expected, everything endures. Love never ends.” Sacred words for Papa Fu, holy person.

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