On Dying Poorly: The Gracelessness of Euthanasia

If you believe, as many Americans do, that artificial feeding by stomach tube is part of recent medical technology, you should know that European surgeons were developing it while Queen Victoria reigned. It was done successfully in the frontier state of Texas as early as 1879, during the presidency of Rutherford B. Hayes.

The European surgical pioneers were not working from idle curiosity, but from the desperate need of cancer patients who were starving to death because they could not eat by mouth. In 1875, British surgeon Sydney Jones operated on a 67-year-old engineer who had cancer of the esophagus and “complained much of hunger.” Jones used the experimental method of gastrostomy. (The name, taken from the Greek, means “stomach mouth”; it involves making an opening in the stomach so a tube can be introduced for feeding.)

If the patient later protested the indignity of feeding by stomach tube, the Lancet account did not mention it. Possibly he viewed gastrostomy as a major aesthetic advance over the old method of emergency feeding, which was by enema. A combination of both methods sustained him for 40 days; then he succumbed to bronchitis.

Soon there was an explosion of gastrostomy reports in the medical press. Most involved cancer patients, but several in the United States were done to save small children who had sustained major esophageal damage after swallowing lye. In 1879, Dr. F. Herff of San Antonio, Texas, operated on little Jessie Lumly, who was “nothing but skin and bones” because she had swallowed lye the previous year. The gastrostomy saved her. In 1880 Dr. L.L. Staton of Tarborough, North Carolina, saved Lewis Lyon, a “colored” boy of eight years, with a gastrostomy. The child was then able to eat by chewing his food and spitting it through a rubber tube into his stomach. (This was before nutritious liquid foods like Carnation Instant Breakfast were invented.) Not very dignified, certainly, but young Lewis apparently favored it over starvation.

Feeding coma patients by nasogastric or stomach tube was done in the U.S. at least as early as the 1940s. A noted case involved Elaine Esposito, who lived for 37 years after she failed to regain consciousness following anesthesia for an appendectomy. Esposito, only six years old at the time of the anesthesia accident, was cared for at home by her family. Their excellent nursing undoubtedly had much to do with her survival, which until recently was the longest on record for anyone in coma. Some Catholic theologians now suggest that an unconscious patient cannot have a spiritual life; but a Catholic bishop gave Esposito her First Communion and confirmation while she was in coma. “She was a peacock,” her mother later told the Tampa Tribune. “She had on her dress and veil and she knew something was on.”

Yet many doctors, lawyers, and ethicists now argue that patients like Esposito and the late Nancy Cruzan should be “allowed to die” when they have no realistic chance of awakening. “Allowed to die” is a euphemism for withdrawing food and water so the patient will dehydrate and starve to death, as Cruzan did in 1990. A surprising number of Catholic moral theologians—and now some bishops—agree with this position.

Why “surprising”? Didn’t even the conservative Pope Pius XII, in a much-quoted 1957 address, say that “normally one is held to use only ordinary means” to preserve life? And didn’t the Sacred Congregation for the Doctrine of the Faith make a similar statement in its 1980 Declaration on Euthanasia? “Yes” to both questions, but that does not meet the issue of dehydration and starvation. Pius XII did not answer it, and the Congregation insisted on “normal care due to the sick person.” Traditionally, normal care has included food and water, comfort and cleanliness. Despite pleas from euthanasia opponents, however, the Vatican has not issued a specific statement on feeding those in coma. It is reportedly studying the issue, on which there is great conflict among theologians.

Opponents of starvation argue that tube feeding is neither extraordinary nor burdensome. In fact, huge numbers of people in our hospitals and nursing homes rely on it for short or long periods, depending on their condition. Providing it for some, but withdrawing it from others because of their mental condition is, opponents say, a lethal form of discrimination against the disabled.

They also argue that withdrawing food and water involves the intention to kill. Withdrawal supporters deny this, saying that family members simply realize that tube feeding is a futile method of treatment and decide to end it—foreseeing the patient’s death, but not intending it. Yet tube feeding is not futile. It achieves for the severely disabled precisely what eating by mouth achieves for the rest of us: It keeps them alive. Many people can live without medicine, nursing care, resuscitation, respirator, dialysis, and so forth; but no one can live without food and water.

Some ethicists insist that withdrawing food from coma patients is not direct killing because such patients have a fatal pathology, that is, the brain damage that prevents them from eating normally. According to this view, if we take away their food and water, they actually die from the underlying pathology.

By the same logic, withholding insulin from a helpless diabetic patient would not cause her death; rather, diabetes would cause it. Withholding critically-needed medication from a heart patient presumably would not cause her death, either. We could clear out our nursing homes and solve our medical-cost problems rapidly with this approach, but we might then have a problem of severe and well-deserved guilt.

This is not to say, however, that everything must be done to keep everyone alive as long as possible. I would argue that cardiopulmonary resuscitation, in particular, has often been used when it should not have been and that this is bad medical practice. It has resulted in some of the coma cases, including that of Nancy Cruzan (who was revived when she had no respiration, pulse or blood pressure and who probably had stopped breathing 10-20 minutes before the paramedics arrived at the accident scene). Extraordinary means should not be used to snatch everyone back from the very door of death, thus creating more hard cases for our bewildered society to handle. Medical people should not, however, try to “correct” their mistakes by starving patients. Abuse should not be compounded.

Writing in Critical Care Medicine in 1988, Dr. Kenneth F. Schaffner supported withholding food and water in some cases, but called this “generally a surrogate for rational assisted suicide.” He said that such withholding “controls or dominates and may well completely override other contributing causes in the causal explanation.” A different construal, he added, “may be a convenient legal (and possibly moral) fiction.”

Catholic ethicists should read Schaffner carefully. They should also think about Dr. Jack Kevorkian’s “suicide machines” and the Hemlock Society’s efforts to legalize euthanasia. The ethicists are playing with a powder keg. They do not have a good answer to the question of why deliberate dehydration and starvation are permissible while lethal injection is not.

Yet their support of the starvation option is accepted by Catholic Health Association leaders and by some administrators of Catholic hospitals. Starvation and dehydration could become “Catholic euthanasia,” just as indiscriminately granted annulments have become “Catholic divorce.”

Feed the Hungry

The Scriptures and the Christian tradition of caring for the helpless both have bearing on the starvation issue. There is the negative of Exodus 20:13 (“You shall not kill”), but also the many positive commands to feed the hungry. Both the letter and the spirit of the Scriptures agree on this point. Of prime importance is Christ’s role as healer and comforter of the sick and disabled. He showed special concern for lepers and other outcasts. He did not abandon anyone, much less someone who was severely disabled.

In both the Old and New Testaments, there are many references to the claims of the hungry. We read of God’s provision of manna to his people in the desert; Elijah’s being fed by the ravens and by a widow; the Psalms’ praise of the Lord who “gives food to the hungry”; the Proverbs’ admonition to give food and drink even to one’s enemy; and Isaiah’s declaration that God does not want ceremonial fasting but, rather, “sharing your bread with the hungry… and not turning your back on your own.” Christ taught His disciples to pray for their daily bread; He multiplied the loaves and fishes to feed a hungry crowd; and He promised salvation to those who feed the hungry and give drink to the thirsty.

Added to all of this is the wonderful story of the Good Samaritan, who was “moved to pity” at the sight of the man beaten by robbers and left “half-dead.” As Father Robert Barry, O.P., has written in The Thomist, the Good Samaritan did not ask whether the crime victim would “survive a long period of time, fully recover his capability for human action, or be able to act for human spiritual and affective ends.” The Good Samaritan did not weigh benefits and burdens. He simply rescued a fellow human being in desperate need.

These Scriptural examples have been honored through the centuries by nursing sisters, parish priests, Saint Martin de Porres, Saint Louise de Marillac and Saint Vincent de Paul, Father Damien, Catholic hospitals and orphanages, Dorothy Day and the Catholic Worker movement, Mother Teresa, the Catholic Relief Services, and countless lay people who have nursed hopelessly ill family members with great fidelity and love. Their work is a glory of the Catholic tradition. It is like a great cathedral, built stone by stone and with much sacrifice. It is admired by many people outside the Catholic fold, including this writer.

How can theologians speaking from that tradition support withdrawing food and water from severely disabled people? Undoubtedly they do so for what they believe are good reasons, including compassion for families whose loved ones are in prolonged coma or “persistent vegetative state” (PVS). This is a term for an unconscious state in which patients alternate between sleep and a quasi-awake state. When “awake,” they show little if any awareness of their surroundings. They may sneeze, cough, open their eyes, respond to loud noise, and even indicate a feeling of pain; but they cannot speak or respond in a normal way. (An older term for this condition is coma vigile. The phrase “persistent vegetative state,” now widely used in the medical community, tends to dehumanize the patient.)

Overlooked Witness

We have all heard a great deal about the family of the late Nancy Cruzan. The mass media generally have ignored families in the same situation who emphatically do not want food and water stopped. Some of them, such as Kathryn O’Bara of Miami, nurse their loved ones at home. O’Bara’s daughter Edwarda has been in a diabetic coma for 23 years. The physical strain of caring for her has been enormous; so have the financial strain and worry. “I know things are rough for everyone,” Mrs. O’Bara wrote in one fundraising appeal to supporters, “but I trust God will move enough people to get me through another crisis.”

After Earl Appleby, Sr., went into coma following a heart attack, his wife, Madeleine, and two of his children nursed him at home for eight years until his death in 1990. Visiting them in their Berkeley Springs, West Virginia, home in 1989, I found a patient who received skilled nursing care and a great deal of love. I also found family members who felt under siege by medical “profiteering” and pro-euthanasia sentiment. Earl, Jr., remarked that if anyone tried to subject his father to euthanasia, he would have to go “over all the Applebys.” I imagined that it would take an army unit to charge up the West Virginia hillside and overcome this devoted, fiercely protective family.

Anyone who visits such families hears stories that should be told by the national media—and pondered by Catholic ethicists.

The Reverend Kevin O’Rourke, O.P., is an influential ethicist who believes it is morally permissible to withdraw food and water from PVS patients. Writing in Issues in Law & Medicine in 1989, O’Rourke emphasized that such patients “are considered to have no potential for meaningful mental activity,” whereas other mentally handicapped people “have some degree of active mental function.” This distinction may not be enough to keep Alzheimer’s patients and the profoundly retarded from being the next groups to have food or medical care withdrawn. Moreover, as the Association for Retarded Citizens and other disability rights groups noted in a legal brief in the Cruzan case: “Many forms of care commonly given to persons with disabilities are far more ‘intrusive’ or ‘burdensome’ than feeding and hydration by tube.”

Father O’Rourke contends that PVS patients are incapable of spiritual life. Yet many people who have awakened from short-term coma have recalled things that happened, and words they heard, while they were “unconscious.” Some PVS caregivers say their patients at times show awareness. Thus Earl Appleby, Jr., described his father as a “night owl” who could be talked to sleep at home but couldn’t sleep in the unfamiliar environment of a Veterans Administration hospital. And Elaine Esposito, as her mother said, “knew something was on” at the time of her First Communion and confirmation.

The late Father John Connery, a Jesuit theologian writing in Health Progress in 1985, said of those in irreversible coma: “All we are sure of is that they cannot communicate to the outside world. We are not at all sure that they do not receive communication from the outside world, at least in some limited way. And how can we exclude an internal life?”

There have been spectacular cases of people who awakened after they were said to be permanently unconscious. At least two of them, Marylander Jacqueline Cole in 1986 and New Yorker Carrie Coons in 1989, were patients whose key family members had tried to stop their feeding. Three years ago in Wisconsin, a man awakened from a “vegetative state” that had lasted about eight years. Some of the awakenings are difficult to explain. Japanese doctors, however, have reported some success in using deep-brain stimulation by electrodes to awaken PVS patients. Pharmacology also offers hope.

Catholic ethicists who want to make a positive contribution should encourage better medical treatment of coma patients. According to a 1991 New York Times report, inadequate care in many trauma centers means that “people are being left with permanent brain damage that could have been avoided.” Ethicists should also stress simple measures, such as safe driving and use of seat belts and motorcycle helmets, which can prevent many brain injuries that result in coma.

Instead of such a positive approach, Dominican Sister Diana Bader of the Catholic Health Association once suggested that money spent on Nancy Cruzan’s care was money taken away from other Missouri citizens, since Missouri did not “have enough money to provide basic, primary care” for many. In media interviews, Father John J. Paris, S.J., has questioned spending a large sum for a PVS patient when welfare families receive relatively little.

Will people who are bedridden for many years with multiple sclerosis or other degenerative diseases be the next to have their care questioned? How about long-term cancer and AIDS patients? Bader and Paris may have good intentions about helping people on welfare, but their approach could do enormous injustice to others. They seem to place the most helpless people in competition with other vulnerable groups.

Why not suggest, instead, that money needed for the relatively small group of PVS patients should come from parts of the U.S. government pork barrel? On the private level, why not suggest that well-off Catholics contribute to the care of the helpless rather than spending large sums on a second home, a third car, a fourth television, and so forth? A few wealthy and middle-class families could lift crushing financial burdens from the shoulders of heroic people like Kathryn O’Bara. By volunteering to give respite care, others could greatly alleviate the psychological strain of long-term nursing.

Finally, all of us should occasionally ask ourselves how much of a burden we are to others, and how much we take from the national economy. In a “Peanuts” cartoon, one of the kids complained that Snoopy “is more trouble than he’s worth.” Charlie Brown responded: “Most of us are.”

By

Mary Meehan writes and speaks on issues of life and death.

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