With the widely documented “graying of America,” increasingly families wrestle with how to care for a terminally ill loved one. Pastors, who have long offered counsel and comfort to the sick and dying (and their families), find themselves asked questions such as:
How can we make Mom’s (or Dad’s) last days comfortable? How can we afford the staggering medical costs? Do we have an obligation to keep her at home? Mom’s in pain and wants to “go home.” What should we do?
Beth Spring, a contributing editor of Christianity Today and with Ed Larson the co-author of Euthanasia: Spiritual, Medical, and Legal Issues in Terminal Health Care, identifies the family’s options and the pros and cons of each from a financial, practical, and spiritual perspective.
Hewlett Robinson faced a dilemma. His father, William Paul, was dying of prostate cancer. The doctors told Hewlett they had done everything they could to treat his father. “How do you plan to provide for him after he is released?” they asked.
Hewlett was certain of the answer: he lived next door to his parents, and he and his wife were ready to care for his father at his home.
After several weeks, Hewlett, an only child, was having second thoughts. “I found I had taken on more than I had bargained for. I was at my wit’s end,” he recalls. He hired a nurse to come in three times a week. 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. They felt obligated to have someone with him twenty-four hours a day. The task became exhausting.
Finally, a neighbor told them about an option they had not heard of before-inpatient care at a hospice. The family agreed to admit William Paul to Southwest Christian Hospice, near their home in the suburbs of Atlanta. “He resented it for a couple of days,” Hewlett remembers. But his father quickly began appreciating the care he received there.
It was completely different from being hospitalized. Instead of aggressive treatment against every physical ill that beset him, William Paul received comfort, “palliative care,” at the hospice. The nurses expertly turned, changed, and bathed him so his extreme sensitivity to touch did not bother him as much. They all knew the hospice would do nothing to prolong William Paul’s dying. He remained at the hospice for two months and two weeks before he died, but placing him there rather than keeping him at home “saved my life,” Hewlett Robinson says.
As the Robinson family learned, dying is a complicated business. Their experience touched all three of the main options facing families with a terminally ill loved one: hospitalization, home care, and hospice. Determining how to care for a dying family member is a difficult choice. Families who seek the counsel of clergy about their options need to understand the benefits and difficulties of each.
Hospital or home?
When a life-threatening medical emergency or a terminal illness first arises, hospitalization is the natural choice. Hospitals are accessible to practically every American, and they offer state-of-the-art technology and treatment. In the initial stages of a terminal situation, a family yearns to have doctors and nurses do all they can for a patient. In a hospital, with specialists on hand, no-holds-barred aggression against disease may include artificially providing food, water, and air to patients losing the capacity to eat, drink, or breathe on their own.
At a certain point, however, the patient or his family may sense that the hospital is no longer an appropriate place for a terminal patient. It is exceedingly expensive to remain in a hospital, and when a patient approaches death, high-tech treatments finally become irrelevant. When families reach this realization-or when patients are suddenly discharged-they often react with shock and disbelief.
JoHanna Turner, with Hospice of Northern Virginia, says, “People just can’t believe that someone who is dying can be discharged from the hospital. Surely, they think, if you’re sick enough to be dying, you’re sick enough to be in the hospital. But a person may be dying for two weeks, and during that time the hospital may be unable to do anything for him. As a society, we are unprepared to deal with this.”
The only alternative many families know is home care. (Nursing homes generally will not accept patients who have been diagnosed as terminally ill.) Usually, home-based care requires a full-time commitment by at least one family member.
Home-based care offers concentrated, individualized attention. It may provide a time of deepening relationships and tying up the loose ends of a lifetime. Home care is not always as difficult as it proved to be for the Robinsons. A well-known instance of terminal home care is recounted by Edith Schaeffer in her book Forever Music (Nelson, 1986). When her husband, Christian apologist Francis Schaeffer, was dying of cancer, the doctors asked her if she wanted him placed in intensive care, hooked up to life-support machinery. “Once a person is on machines, I would never pull the plug,” a doctor told Edith.
She considered carefully her husband’s perspective and their shared commitment to the Lord and to one another. Finally, she told them she would take her husband home, to a house he had asked her to buy near the Mayo Clinic in Rochester, Minnesota. Ten days later, in a room filled with music and overlooking a garden, Francis Schaeffer died.
Hospice: a bridge
A bridge between hospital and home care is hospice care. Nurse Peggy Beckman, with Hospice of Northern Virginia, points out, “The need for hospice was identified when people saw what was happening to hospital patients when they became terminal or when doctors had decided that everything curative had been done. Many times they ended up very alone-not neglected, but by-passed. Hospice was a response to that. After someone has been given a prognosis that he or she is going to die, there is a lot left to be done.”
The contrast between a hospital physician’s saying “We’ve done all we can do” and a hospice nurse’s saying “There is a lot left to be done” illustrates how these two facets of the health-care system differ.
Both are, of course, appropriate for different types of patients. Hospice care is not nearly as accessible as hospitalization. There are only about 1,700 hospice programs in the United States today, according to the Virginia-based National Hospice Organization. Most of them are in or near large metropolitan areas.
But hospice care is considerably less expensive than a hospital stay-between 20 and 40 percent less. In the final weeks of life, one study showed those savings extend to 58 percent. Hospice care is covered by Medicare and by an increasing number of private insurers.
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 patient’s physical needs will concentrate on pain control, trying to prevent it 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 they will not die alone, and family and hospice staff wait with those who are near death. Up to one year of bereavement counseling is provided for family members after a death occurs.
Spiritual care
People involved in hospice care do not attempt to weigh a patient’s worth or determine when the patient has lived “too long”-both of which are characteristic of the right-to-die mindset.
“We joke about ‘God’s prognosis,’ because the patient we think is going to be with us for a couple weeks lives for a year, and the one we think has lots of time suddenly declines very fast,” says Jeanne Brenneis, a chaplain for Hospice of Northern Virginia. “No one knows when he or she is going to die, and that is one of the hardest and most frustrating things a patient and family have to deal with.” A sense of transition permeates a hospice, and attention to spiritual needs is central.
Southwest Christian Hospice, where William Paul Robinson spent his last days, is unique because it is fully funded by nearby Southwest Christian Church, a congregation affiliated with the independent Christian Churches and Churches of Christ. Minister Jim Dyer, who has served Southwest since 1956, started the hospice in 1984 after observing a Catholic home for terminally ill cancer patients. A cadre of sixty-five church volunteers visits patients, provides clerical support, and cleans the eight-bed facility.
Dyer explains the spiritual basis of their involvement: “As Christians, can we face death with dignity and loving comfort for each other? Our theme Scripture is ‘We sorrow not as others who have no hope’ (1 Thess. 4:13). We do sorrow; we’re not automatons. But our hope is in Christ.”
Still, there are no easy answers. Dyer met with a family one morning in which an elderly man wanted to refuse a pacemaker to keep his heart going. “He kept saying, ‘I’m tired. I want to die.’ I don’t know what their decision will be. He’s competent to make the decision himself. I’m going to be there to support them and pray with them. I don’t know the right answer. When my mom was dying, I didn’t want them to bring a resuscitator into the room. When her body could no longer sustain itself, I believe the Lord was calling her home. To keep her alive at that point would have robbed her of some dignity and some meaning in life.”
Because hospice care emphasizes spiritual concerns, and because it is not exclusively Christian, it has sometimes been associated in people’s minds with New Age spirituality. And in expressly nonsectarian programs, some staff members may be influenced by books and seminars theorizing on out-of-body experiences or communication with spirits. Pastors may want to contact the director of a particular hospice to ascertain the program’s orientation. In most cases, it will be amenable to a Christian world view.
Chaplain Brenneis, at Northern Virginia Hospice, has found that many terminal patients want to affirm a relationship with God. “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 your life is ending, there are bright spots-very bright spots-relationships they’re not finished with, children and grandchildren, good things to enjoy. We try to help people be fully alive while they’re dying.”
In the case of William Paul Robinson, creative caring meant identifying activities he could continue to enjoy until his death. After he entered the hospice, his granddaughter, Ruth Henry, remembered how much he had enjoyed watching the cardinals and bluejays that visited her bird feeder. She noticed that each patient room at Southwest has a balcony, overlooking a wooded hill alive with birds. So, with hospice staff permission, Ruth put up bird feeders for all the patients to enjoy.
“Dad watched those birds and was amazed,” Hewlett Robinson recalls. “He thoroughly enjoyed them even when he was in his worst pain.”
Roberta Paige, a nurse who established the first hospice program in a U.S. hospital, believes the movement will grow among Christians as they recognize how compatible it is with biblical concepts. “In a manner of speaking, we are all dying,” she notes. “A good hospice team sees individuals who are dying. The emphasis is on the individual first and then the dying. It is a subtle but important difference.”
-Beth Spring
McLean, Virginia
For More Information:
National Hospice Organization, 1901 N. Fort Myer Drive, Suite 402, Arlington, VA 22209
Southwest Christian Hospice, 7225 Lester Road, Union City, GA 30291
Special Ministries for Caring Churches, Robert E. Korth, ed. (Standard, 1986)
Euthanasia: Spiritual, Medical, and Legal Issues in Terminal Health Care, Beth Spring and Ed Larson (Multnomah, 1988)
Hospice Resource Manual for Local Churches, John W. Abbott, ed. (Pilgrim, 1988)
Copyright © 1989 by the author or Christianity Today/Leadership Journal. Click here for reprint information on Leadership Journal.
