The hospice movement can be a powerful force for undercutting the campaign for euthanasia.
The church is no stranger to terminal illness. Yet in many cases, it remains aloof from a debate that rages over how the dying are treated and whether they are worth treating. A societal bent toward accepting an inherent “right to die,” and perhaps even a “duty to die,” is increasingly evident in court decisions, such as the one granting paraplegic Elizabeth Bouvia permission to starve herself to death under the auspices of a hospital. It is evident in states such as California, where an attempt was made to place an initiative on its November ballot to permit physician-assisted suicide, and in the popular media, which paint the “hard cases” of terminal quandaries in shades suggesting euthanasia as a reasonable, even merciful, alternative.
Repelled by right-to-die utilitarianism and perplexed by the high-tech terminology of the debate, many evangelicals have opted out of the conversation. Yet many others are discovering a different approach to terminal illness that is readily understood, compatible with biblical views on dying, and within the reach of most congregations seeking a meaningful way to participate in the lives of the sick and dying. It is the hospice movement.
Hospice is not new; the first U.S. hospice was founded in 1974. But hospice is taking on new significance today not only for the patients and families it serves, but also as an important force in society for challenging the prevailing philosophy that accommodates, and even encourages, a right to die.
Hospice And Euthanasia
Euthanasia is generally understood to be a deliberate act or omission that causes the death of another person. In the view of most Christian ethicists who have addressed it, euthanasia is the wrong answer to the right question, a question sure to be posed with growing frequency as the U.S. population gets proportionately older: How should modern medicine treat a dying person who does not want to live any longer, or whose capacity to understand and enjoy life appears to be irretrievably diminished?
People who are terminally ill may be confronted with doctors and nurses trying to do all they can to preserve every last ounce of life. This may mean prescribing antibiotics to cure pneumonia in a cancer patient who might more mercifully die; it may mean a “full-court press” to resuscitate a terminally ill person who suffers cardiac arrest. Yet even more crucial, for some families, is the question of how to care for a terminally ill loved one who is discharged from hospital care after doctors determine there is nothing more they can do. The question becomes all the more urgent, to many observers, because of skyrocketing costs for quality medical care, a scarcity of insurance coverage or federal benefits for custodial care, and the threat posed by aids to the resources of America’s health-care facilities.
Hospice has an answer, based upon a philosophy of caring for the dying that recognizes the inevitability of death, respects the patient’s wishes for treatment or nontreatment, and offers physical, emotional, and spiritual comfort to enable a terminally ill person and his or her family to make the most of the time that remains. With a few exceptions, it rejects euthanasia as being incompatible with its purposes.
The founder of the modern hospice movement, British physician Cicely Saunders (see below), believes legalized euthanasia would undermine the very basis of trust in which medical practice is rooted. She has written, “I believe that to make voluntary euthanasia or assisted suicide lawful would be an irresponsible act, hindering help, pressuring the vulnerable, and abrogating our true respect and responsibility to the frail, the old, and the dying.”
Coping With The Truth Together
Perhaps because of the prominent figure of Elizabeth Kübler-Ross, hospice’s roots are often thought to be humanistic, with little regard for a Christian understanding of life and death. But the founder of the hospice movement, Cicely Saunders, is a devout Anglican. Largely because of her, a bias against euthanasia is evident in the beginnings of the modern hospice movement.
In 1947, Saunders was making her hospital rounds as a social worker in England. She met a man from Warsaw who did not yet know he was dying. Saunders knew, and she eventually told him. She recalls, “The foundation of Saint Christopher’s is how we coped with that truth together.” What the patient needed most, she discerned, was not state-of-the art medical treatment. She has written, “David needed peace from distress to sort out who he was, to find how he could gather the scattered fragments of what looked an unfulfilled life somehow into a whole at its ending.”
Saunders’s intense interest in meeting the needs of the terminally ill led her to become a physician. She is widely recognized today for her pioneering work to control the pain of terminal cancer patients. And she continues to administer Saint Christopher’s in London, the first modern hospice.
By Beth Spring.
In its early days, hospice was associated with some questionable trends and ideas, such as Elisabeth Kübler-Ross’s spiritualism. Christian hospice workers admit they now face a challenge from the New Age movement. In particular, programs that are expressly nonsectarian may find their staff members influenced by books and seminars theorizing on out-of-body experiences and communication with spirits. Darlene Kloeppel, a social worker who directs bereavement care for Southwest Christian Hospice (near Atlanta), has worked at three other hospices. She has observed New Age inroads in hospice circles. “It’s growing everywhere, not just in hospice. The hospice movement has always encouraged personal growth, spiritual growth, and alternatives to traditional ways of doing things. New Age thought has crept into that, as well as [into] things like life after death experiences. Those sorts of things have always been openly discussed and workshops offered to hospice personnel.” Because of Southwest’s explicitly Christian outlook, Kloeppel said, New Age thought has no bearing there.
Although some hospices may be infected by the New Age movement, with respect to the more and more pressing issue of euthanasia, evangelicals have a potential ally in the hospice movement. As American Roman Catholic nun Anne Munley puts it, “As far as hospice is concerned, legalization of euthanasia would be nothing more than a cheap, expedient solution to the problem of terminal care at the expense of the patient’s best welfare.… Rather than being a ‘foot in the door’ for euthanasia, the hospice movement can be a powerful force for undercutting a movement for active euthanasia.”
How Hospice Works
On a wooded hill south of Atlanta, Southwest Christian Hospice welcomed an elderly cancer patient last year. William Paul Robinson, afflicted with prostate cancer at age 88, had been discharged from hospital care one month before he entered the hospice. When the doctors prepared to release him from the hospital, they asked his son, Hewlett, how he intended to provide for his dying father. Hewlett, who lived next door to his parents, was prepared to accept the challenge of providing home-based care.
But, as he recalls, “I did it for a month and I found I had taken on more than I bargained for. I was at my wit’s end.” Hewlett, an only child, hired a visiting nurse to come in three times a week. Meanwhile, as the cancer spread and his father’s condition deteriorated, Hewlett changed the bedding three times each day and bathed his father. His wife prepared meals for both her in-laws. Calls came in the middle of the night, and within days the task became exhausting.
A neighbor told them about Southwest Christian Hospice, and the family agreed to admit William Paul. “He resented it for a couple of days, and we had to calm him down,” Hewlett Robinson says. His father quickly began appreciating the care he was receiving. “There are so many people praying for me,” he told his son. And the nurses expertly turned, changed, and bathed him so his extreme sensitivity to touch did not bother him as much. He remained at the hospice for two months and two weeks before he died. Placing him there rather than keeping him at home “saved my life,” Hewlett Robinson says.
Southwest Christian Hospice is unique because it is fully funded by nearby Southwest Christian Church, an independent congregation affiliated with the independent Christian Churches and Churches of Christ. Minister Jim Dyer, who has served Southwest since 1956, started the hospice after observing a Catholic home for terminally ill cancer patients. Initial skepticism—from his own congregation and the Atlanta health-care community—has given way over the years since 1984 to enthusiastic support and a cadre of 65 church volunteers who visit patients, provide clerical support, and clean the eight-bed facility.
Dyer explains the spiritual basis of their involvement: “The hospice program grew out of a consciousness that we need to grapple with the time of death itself as Christians. Do we really believe what we say we do? Can we face it with dignity and understanding and loving comfort for each other? That was the philosophical background for our involvement in it.”
Twenty-five percent of the church’s annual budget maintains the hospice program (in 1987 the total was $373,000). Because of the church’s support, Southwest charges no patient fee. It accepts patients of any or no religious background, and it has served as a refuge for families who run out of money to pay for terminal health care.
The way in which Southwest is financed and staffed is unique, but it resembles other hospice programs in providing a team approach to patient care. Hospice nurses, social workers, clergy, and volunteers, as well as family members and the patient’s own doctor, meet together to determine what needs to be provided. Patients given hospice care generally have a life expectancy of six months or less, and approximately 95 percent of them have cancer.
Hospice care holds out several promises to its patients. First, their personal wishes regarding treatment will be respected. If they have determined not to receive further chemotherapy, for example, no one will try to persuade them otherwise. Second, attention to the patients’ physical needs will concentrate on pain control. The key, according to hospice medical personnel, lies in preventing pain from occurring rather than relieving it on demand. Emotional and spiritual support are available to assist patients in coming to terms with their illness. Patients are assured that they will not die alone, and family and hospice staff wait with those who are near death. And up to one year of bereavement counseling is provided for family members after a death occurs.
An overarching goal, according to hospice personnel, is to concentrate on providing a patient with all the “quality of life” possible. Sometimes this term, which is used extensively by right-to-die advocates, leads to confusion. Families who believe a hospice will assist their loved one in dying are firmly told that euthanasia has no place in hospice care.
Peggy Beckman, a nurse at Hospice of Northern Virginia in Arlington, has an answer that resolutely resists death as an easy way out. If a family inquires about assisted suicide or lethal injections, Beckman says, “The first thing we have to let them know up front is that that is not something we can help them accomplish. Some families have the idea hospice is a place that will help people die. We have to clear up those misconceptions. What I have found, when I have had to deal with this personally, is that most of it comes down to fear of what patients are going to suffer. If you reassure them you are here to see that they do not suffer, it helps.” Northern Virginia Hospice has seen only four patients out of many thousands commit suicide in its ten years of operation.
Hospice In The United States
In the United States, there are approximately 1,700 hospice programs, according to the National Hospice Organization. Most offer assistance for families, such as the Robinsons, who are caring for a terminally ill loved one at home. In addition, many programs offer inpatient care at or adjacent to a hospital. And some, including Southwest Christian and Northern Virginia, have freestanding inpatient facilities.
At an inpatient unit, the sterile, high-tech, scrubbed-white feel of a hospital is entirely absent. It has the ambiance instead of a country inn, with spacious sitting rooms and kitchens where family members might prepare a special treat for a patient. At Hospice of Northern Virginia one afternoon, an elderly cancer patient was wheeled out of his room for a change of scene. A visitor arrived with a white toy poodle, eager to leap into his old friend’s lap. Throughout the building, attractive watercolors decorate the walls. A meditation room is equipped with an altar, chairs, and a wide selection of devotional reading material.
Weekly staff discussions about patient needs illustrate how the priorities of hospice care depart from traditional medical concerns. An AIDS patient, newly baptized by the hospice chaplain, wants to get in touch with other Christians. Concerns are raised about a deceased patient’s sister who refused to visit the funeral home. One patient, a former top executive, had vented his anger and discomfort at two team members. The team agrees to order a more comfortable adjustable bed for his home.
Integrating Medical And Spiritual Care
All the components of hospice care add up to a whole that reveals a markedly different attitude toward death and dying. While the right-to-die movement, and increasingly the rest of society, tends to use terms such as “hopelessly” ill or “incompetent,” hospice personnel are careful to avoid suggesting that a patient’s life has irretrievably lost its meaning.
Roberta Paige, a nurse in Portsmouth, Virginia, who founded the first hospice program based in a U.S. hospital, explains how hospice care can affirm a seemingly worthless life: “A retarded patient who lived alone in a single room looked at me and said, ‘I look like a monster, don’t I?’ I winced, because he was very unpleasant to look at; the whites of his eyes were red. I knew, though, that this was a patient who desperately needed love and acceptance. Love took the form of the chaplain going to his room and making nutritious, appetizing meals. Love meant taking him for a ride in a wheelchair to other parts of the hospital so he could listen to some piano music or attend a tea party. The hospice team and the hospital staff became his family. His memorial service was held in the hospital’s chapel.”
For Christians involved in hospice care, attending the needs of the dying offers a unique opportunity for minis try. According to chaplain Jeanne Brenneis, at Hospice of Northern Virginia, affirming a relationship with God may be a terminal patient’s most important task. An AIDS patient provided a case in point. He is the son of a Baptist clergyman and a Methodist, and he had never been baptized. He decided, during the course of his illness, that God was calling him to a visible sign of commitment through baptism. Brenneis recalls, “In early September I baptized him right here in the inpatient unit. His sister and brother-in-law came here for it, as well as his mother, home-care nurse, and social worker.
“He is more at peace, he has repented, and he feels washed and clean. He would love to belong to a church, but he cannot go out.”
Brenneis often hears the despairing refrain, “I just wish it were over. I’m tired of this.” She reminds patients of the good things in life that remain for them to enjoy. “I pray with people regularly, giving thanks for this day and for all the signs of God’s love in it. In my counseling, I try to nudge people to see that even in the despair of knowing that their life is ending, there are bright spots—very bright spots. There are relationships they are not finished with, children and grandchildren. We try to help people be fully alive while they are dying—to the very end.”
Southwest Christian Hospice takes a similar approach. It calls itself “the hospice of hope,” and claims 1 Thessalonians 4:13 as its theme Scripture: “Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope” (NIV.)
Patients at Southwest who desire spiritual care may call on their own church’s minister for visits and support, or they may turn to one of Southwest Christian Church’s six ministers. Each of the six is assigned one day of the week to be on call for hospice care. Dyer, the church’s senior minister, visits once or twice a week and does volunteer work at the hospice on Friday afternoons.
The value of hospice care for family members came home to Dyer when his father died. He suffered a stroke the day before his ninetieth birthday, and within three weeks, doctors found he had brain cancer. He stayed in the hospital for two months, then asked to be moved to Southwest’s inpatient unit. “He had lived across the street from it, he saw it being built, and it was a part of his life,” Dyer recalls.
“He lived here for about a week-and-a-half, and my brother and I were able to be sitting beside him holding his hand when he breathed his last breath and went to be with the Lord. The support we were given by the people here and the love shared with us vindicated all we are doing here.” Dyer was contacted, as all next-of-kin are, for bereavement care. At first he resisted, thinking, “I do that all the time.” But he discovered he needed it as much, if not more, than anyone else.
Not giving up on a patient, even one who appears to have given up on himself, is a hallmark of hospice care. Paige remembers a “very angry young man” she met. “My initial contact with him was when he threw a urinal across the room. He hated the hospital and was angry about his diagnosis. He had severe pain and learned that he was sterile because of chemotherapy and could not father any children. He then became paralyzed from the waist down.
“The hospice team controlled his pain and arranged for him to give a guitar concert to the staff. On steaming hot days, the chaplain would visit him in his apartment, bringing the patient’s favorite flavor of ice cream. The patient received a lot of love, and in the process learned something about Jesus. He made Jesus Lord of his life and spent his last days praying for his roommates in the hospital, rejoicing when they seemed to be getting better. He was and remains an inspiration to me of what the Spirit of God can do in and through a person.”
Challenges Facing Hospice Care
The hospice movement, in the last decade, has come of age as a legitimate and even essential part of the larger health-care system. More and more, patients come to hospice programs out of necessity rather than ideological commitment to its particular view of death and dying, nurse Peggy Beckman says. Patients are discharged from hospitals more swiftly now, and decisions to forgo treatment are becoming more routine.
AIDS confronts the hospice movement, as well as the rest of society, with perhaps its greatest medical challenge. Most of the terminally ill cared for by hospices, so far, have been elderly. Assisting AIDS patients, most of whom are young, to find meaning and fulfillment in the life that remains may present hospice staff members with a new and daunting task. But the ways in which they accomplish their goals among people afflicted with AIDS may teach the rest of us—including the church—how to respond compassionately and appropriately to a major health crisis.
Another challenge to hospice organizers and advocates involves the extent to which the movement may become a vehicle for rendering the right-to-die debate virtually irrelevant in society. Cicely Saunders has long taught that the hospice movement should cast itself in this role. In a 1980 article, she wrote, “When someone asks for euthanasia or turns to suicide, I believe in almost every case someone, or society as a whole, has failed that person. To suggest that such an act should be legalized is to offer a negative and dangerous answer to problems which should be solved by better means.”
The difficulty confronting the hospice movement is the growing persuasiveness of the right-to-die movement and its attempts to embrace hospice as part of itself. Many right-to-die activists pay scant attention to hospice, dismissing it as a solution for only a very few terminal cancer patients. At the same time, Hemlock Society founder Derek Humphry (who advocates legalizing assisted suicide) paints the movement as being compatible with euthanasia. He writes, “Put bluntly, hospice makes the best of a bad job and they do so with great skill and love. The euthanasia movement supports their work.… We do not feel there is any cross purpose between euthanasia and hospice; both are appropriate to different people, with different values.” Promoters of voluntary suicide and active euthanasia emphasize individual choice and autonomy, but they concede that “… almost all euthanasists would probably resist the idea of dying in a hospice.” The difference between the two movements appears to originate in different spiritual orientations. Humphry and coauthor Ann Wickett note in their book, The Right to Die (Harper & Row), that hospice workers who are religiously motivated are much more likely to oppose euthanasia.
The Church And Hospice
Those who work with dying and elderly persons often say the church is the best institutional friend these people have. The recently published Hospice Resource Manual for Local Churches (Pilgrim Press) encourages congregations to understand how well suited they are for this sort of ministry. “The church is responsible for whether its members are prepared to die and for how they die,” editor John W. Abbott writes. “The church is responsible for any degree of spiritual pain felt by those who are part of its family.”
Hospital visitation, ministry to members confined to their homes, and special concern for congregants who are ill mark the ministries of practically every church. These aspects of church life resemble hospice care, and can in fact become part of ongoing hospice programs. Janice Weaver, who directs Southwest Christian Hospice, has written an article encouraging churches to become involved in the hospice movement. She notes that Southwest’s 900-member congregation enables the church to run an entire program by itself. But she writes, “The size of a congregation is a secondary consideration to the starting of a hospice program. The desire to serve is vital.” She suggests that smaller churches pool their resources in order to assist an ongoing hospice program or begin one of their own.
By serving the needs of the dying, the church does indeed enter the larger debate over the right to die. It does so with an eloquence that shrugs off high-tech language and convoluted situation ethics. Without drawing much attention to itself, the hospice movement has been modeling an approach that is compatible with biblical attitudes on death and dying. It discerns a critical distinction drawn by U.S. Surgeon General C. Everett Koop, who advocates giving patients “all the life to which they are entitled” while not “prolonging the act of dying.” Koop says the right-to-die camp has it backwards: “The quality of life we talk so much about is nowhere as important as in the reflection those decisions make in the quality of our own lives.”
A contributing editor of this magazine, Beth Spring is the author, with Ed Larson, of the recently published Euthanasia: Spiritual, Medical, and Legal Issues in Terminal Health Care (Multnomah).
