Robert Hirschfield is a free-lance writer who lives in New York City.
This article appeared in the Christian Century, February, 18, 1987, p. 159. Copyright by the Christian Century Foundation and used by permission. Current articles and subscription information can be found at www.christiancentury.org. This material was prepared for Religion Online by Ted & Winnie Brock.
The primary aim of hospice is to help patients die with dignity. And one of the ways that is achieved is by allowing patients, whenever possible, to make choices about their treatment. Pain control is one of the most important services hospice provides, for a patient ravaged by pain has no dignity, and very often would prefer to have no life.
When I was just beginning to do volunteer work at Cabrini Hospice in Manhattan, I visited an emaciated, dispirited man who was dying of cancer of the larynx. It was all but impossible for him to speak. The few words he did manage emerged in a whisper that seemed to come from the elaborately bandaged crater by his throat. A nurse stopped by and noticed his sluggishness. "Do you want us to give you less methadone, Mr. DeVoe? Or should we continue with the dosage that we have been giving you?" Turning away from her, Mr. DeVoe remained silent for awhile. But the nurse hung on to the question until she had his answer.
The primary aim of hospice is to help patients die with dignity. And one of the ways that is achieved is by allowing patients, whenever possible, to make choices about their treatment. More methadone or less methadone? Radiation treatment or no radiation treatment? The patients at Cabrini are not led to their deaths blindfolded.
Like most of America’s approximately 1,000 hospice programs, Cabrini’s is based on home care, with a 15-bed in-patient unit to care for crisis cases. Cabrini is one of New York’s largest hospices, capable of handling up to 65 patients at a time. It is run by laypeople under the auspices of the Missionary Sisters of the Sacred Heart. To be admitted to the program one must be diagnosed as having six months or less to live. Medicare covers most patients, private insurance the rest. At Cabrini, life-prolonging devices such as respirators and naso-gastric tubes are dispensed with. Cancer patients predominate, along with a growing number of AIDS victims.
Hospice has succeeded in expanding and energizing the often narrow, airless world of the crisis-stricken family. Cabrini provides a social worker, nurses, a doctor and volunteers. ("Hospice may be one of the last places left where a doctor still makes house calls," maintains Barbara Rice, Cabrini’s director of volunteers.) There are also weekly support meetings for all primary caregivers.
Sister Loretta Palamara, Cabrini’s director of pastoral care, who has been with the hospice since its founding in 1980. tells endless stories of her relationships with patients, their families and their friends. Once, at three in the morning, a dying man summoned her to his bedside and told her to have his two sisters and his daughter come to him. The women came, stood around, said nothing, then withdrew to the lounge. "You see that," the patient remarked to Sister Loretta, "no one spoke." "But Jack," she said, "it’s four in the morning. What do you expect?" Jack would not be placated. "You don’t understand. They never speak. You must go and tell them they have to forgive each other for what happened 17 years ago." The sister did as she was told. The women broke into sobs and embraced one another. Jack died the next day. Sister Loretta never learned the nature of the wound she had helped to heal.
Most volunteers’ involvements with families are not that dramatic. Volunteers bring supplies and listen to patients’ complaints, fears and family legends. One volunteer simply played Scrabble with his patient week after week.
The families that 4~hoose hospice are unusual in a culture that banishes the dying from the world of familiar faces, furniture and kitchen smells, and entrusts them instead to hospitals and nursing homes, to the wilderness of pills and medical gadgets. The families that decide to care for their terminally ill loved ones at home are motivated by an uneasy mixture of love and guilt. Courageously, they learn to change diapers, give injections and endure the chastening smells and sights of the dying. They have resurrected in this country the mislaid ritual of communion at the rim of extinction.
But hospice is not only for patients who have family and friends to care for them. It also helps patients to die alone in their own homes. All that is needed is a volunteer willing to provide care.
I have cared for two patients who died alone. One was an old woman named Ruth Levy. To get to Ruth, one had to pass through two doors -- the door of her home and the door of her solitude. Of the two, the latter was often the harder to penetrate. There were days when she could barely bring herself to acknowledge my arrival. Death, which looked out at me from the crags and caverns of her face, went forever unmentioned by her, as if it could be made to take offense and go away.
In contrast, Fred Smith was able to face death squarely. He once said, "Every night I pray, ‘God, I thank you for this day, but please see to it that I don’t have to live through another one like it."’ Unlike Ruth Levy, whose lung cancer caused her no physical pain, Mr. Smith’s tumor pressed against his spine and kept him in agony much of the time. While Ruth could still court denial, Fred had seen all his illusions burned away by pain.
Failure is woven into every success at hospice -- that is the terrible paradox of it. The friendships that for a time bridge the void are consumed by the void. Hospice teaches detachment.
In We Die Before We Live, his book about St. Rose’s Home for terminally ill cancer patients, Daniel Berrigan writes: "I am beginning to sense it; you have to be in good form spiritually to work here," At Cabrini, as at St. Rose’s, not everyone is in good spiritual form, but it helps if you are. All around you is the question of suffering, the questions of life and death and God and afterlife. And nowhere are there any answers.
"Volunteers," says Barbara Rice, "find it a good atmosphere in which to practice self-reflection."