Hunger and thirst, starvation and dehydration-ugly words to most of us, bringing images of tormenting weakness, agonizing muscle spasms, the ultimate cannibalism as the body devours itself to stay alive. But not everyone views such words with disgust. Last May, St. Louis University, a private Catholic school, held a conference on medical ethics that included a workshop entitled, "Dying of Dehydration-Does it Hurt?" Last April, some contributors to the symposium in First Things on medical ethics, "The Sanctity of Life Seduced," recommended starvation and dehydration for certain terminal patients and those in a "persistent vegetative state" (PVS). Living wills list artificially administered food and water as things that may be taken away, and newspaper and magazine articles continue to suggest that modern technologies for continuing food and water cause the terminally ill to suffer long and agonizing "bad deaths," or (if they are in PVS), "bad lives" without human capacities.
The people who recommend starvation and dehydration are not monsters or throwbacks to the Third Reich. They seem to be genuinely concerned with the pain and ugliness of "bad death," and some of them are worried that the horrors of technological death increase grassroots support for the euthanasia movement. Those who favor removing food and water have impressive credentials. They include lawyers, doctors, and medical ethicists. However, I wonder how many of them have experienced dehydration and starvation almost to the point of death; how many of them have spent time in the sick bed?
I am a patient-not terminal or in PVS, but very expensive to keep alive, and more and more aware, as I grow older, of what it means to regard food and water as options instead of necessities. I have had scurvy, liver damage, compression fractures, staph infections, seizures, kidney failure, and many episodes of severe dehydration and malnutrition (one almost fatal). Having had surgery for Chrohn's disease, I am kept alive by very expensive hydration and nutrition that goes directly into the bloodstream. Poor health has been a part of my life for twenty-three years.
During this time, I have not noticed that my doctors are afflicted with the hubris that regards death as an accident that can be prevented. Perhaps because they work with chronic disease, my doctors tend to have a very fatalistic attitude. They know they cannot overcome death. All they can do is buy time-and few of them want to buy time for a dying patient in great pain.
Yet ordinary people seem to have gotten the impression that this is exactly what doctors most want to do. Ordinary people seem haunted by the nightmare of the technological "bad death." An old woman full of cancer has her heart stop. Instantly the medics rush in with the paddles to start her up again. A respirator is hooked up. Her gut shut down a couple of days ago, so she already has a central line. Her kidneys quit yesterday, and she is now on dialysis. The medics shock her heart back into action, make sure the beat is regular, check all systems, and leave, after hooking her up to a heart monitor. But late that night the nurses are called away from their stations to tend to others. There is no one watching the monitor. The woman's heart stops-this time forever.
Such a death would certainly be an example of technological hubris, but no one should believe that this is routine care for elderly patients with terminal conditions. The extreme, high-tech procedures imagined by ordinary people are rarely the subject of debate; it is simple feeding tubes and common antibiotics that are labeled "unnatural" by "ethicists"-in the thought that the life which they sustain is also unnatural and should not be continued. Feeding tubes are artificial and unnatural, of course, although they are low-tech and simple to use. They are necessary only for a person who cannot swallow. In most cases, spoon-feeding can be, and used to be, done instead, though it is more expensive. Spoon-feeding must be done by hand and spoon-fed diets have to taste good. It is unfair to blame feeding tubes for keeping people alive when many patients (including even some in PVS) could be nourished by other methods. This does not change the fact that feeding tubes are unnatural. But the nature of man is to live in an unnatural environment. There are many people in our society who are kept alive by unnatural technology. There are many people with mild chronic diseases or physical handicaps who are not robust enough to live without electricity, running water, air-conditioning, cars, microwaves, and telephones. Placed in the natural environment of a third world country, they would soon die- unless, of course, someone was willing to care for them. But is such care "natural"? Is it natural for a person or family or society to assume the burdensome care of an adult who will never get better? Is it more natural to help a crippled adult limp to the toilet than to diaper and wash an incontinent adult? Is spoon-feeding a paralyzed man who can only open his mouth and swallow more natural than tube-feeding a paralyzed man who can turn his head and smile?
Perhaps we should ask a different question. Perhaps we should ask, "Is it natural or unnatural for man to use technology to increase his physical comfort?"
Having spent a fair amount of time dehydrated and malnourished, I can confidently say that hydration is far more pleasant than the opposite. Anyone who doubts this can forgo fluids for a few days or nourishment for a few weeks and experience the reality. And after my experiences with staph infections, I would want antibiotics even if I were dying of cancer.
Of course, there is an art to the practice of medicine, part of which involves looking at the patient as well as the chart, and knowing what will help and what will hurt the whole person. There may be times when antibiotics cannot be given, perhaps because the side effects are worse than the staph or because the kidneys or liver cannot take the strain. There may be times when a cancerous mass or fluid retention causes tube feeding to be painful. And there comes a time when the gut and kidneys shut down. The body cannot use food and water after that point, and death is very close. But I cannot understand taking away food and fluid before the body itself decides to quit.
Although food, water, and antibiotics add greatly to a patient's comfort, there are still people who fear a technological "bad death." They have, I think, two reasons for their fear. Hospital deaths with IVs and feeding tubes are the only deaths they see, and, with or without medical technology, dying tends to be a long and painful struggle. This is not the fault of the feeding tube. It is nature's fault. Our bodies are constructed to fight death. Everything from our bone marrow to the wax in our ears continually defends the body against invasion, attacking invaders who have breached the barriers and repairing injury. Death may be natural in that it is part of nature, but our bodies do not find it so. It is natural for them to struggle against death until there is nothing left to fight with, and anyone watching the struggle is going to be upset. It is hard to watch even when the patient is kept as comfortable as possible-even harder if the patient is in pain.
I believe this is the strongest reason for the fear of a technological bad death. Many of us who have lost friends or relatives have seen them suffer great pain. Unfortunately, we have sometimes seen doctors or nurses treating dying patients as though they were merely surgical cases, allowed only so much sedation every four hours. It may well seem more compassionate to starve and dehydrate a patient rather than to allow him to live on in such pain. And food and water are, of course, futile for a dying patient. But so is bedding, so is clothing, so is shelter. None of these will cure disease or prevent death except for the death that results when they are taken away. We can take away the bedding and the clothing and leave the helpless patient naked, so he dies of hypothermia or pneumonia. We can take away the artificial shelter of the hospital and leave the patient in a natural setting, so he dies of exposure. Or we can take away his food and water so he starves and dies of thirst. We can then soothe our consciences by saying that we have not killed anyone or intended anyone's death, but merely allowed nature to take its course.
But we are in control of nature. We decide what we will take away, and when, and from whom. Nature becomes our tool and does our dirty work for us, allowing us to feel blameless as we pull the stomach tube and disconnect the IV.
Most ordinary people, however, know there is a difference between omission and abandonment. They do not accept the idea, so popular with those who would remove food and fluid, that taking away a helpless person's food and water is morally superior to giving him a lethal injection. My distant cousin, a man with cancer, died from the removal of his food and water. His sister was not allowed to be in on the decision, but she watched him die in torment. While he was still able to feel pain, he was racked by agonizing muscle spasms. When he was finally dead, he was so contorted that the undertaker was unable to make him presentable. His sister, a registered nurse, considered it the most horrible death she had ever seen.
Of course, those who would remove food and fluid do not wish to torture the helpless: therefore, I can only assume that they have no idea of the quiet torment of starvation and dehydration. Doctors may say that it doesn't hurt, but knowledge of suffering cannot be gained second-hand. I do not understand how a headache feels by reading about constricted blood vessels. I know how those blood vessels feel because I have a headache. My experiences with starvation and dehydration have not encouraged me to think of them as a comfortable alternative to the "bad death" of feeding tubes, nor as a superior rival to the swift, painless, merciful death promised by those who support euthanasia.
But those who would remove food and fluid do not stop with the terminal patient. They are also concerned with those leading a technological "bad life"-those in PVS. They feel that many people are afraid of ending up in such a state, and this fear encourages grassroots support of euthanasia.
I agree about the fear, but I believe it has a different cause. I have had high school students express concern about ending up in PVS, perhaps because they have been taught that it can result from drinking and driving. But the older people I know are simply afraid of helplessness. In the celebrated case of Christine Busalacchi, the St. Louis papers and TV stations were full of debate on whether her cerebral cortex was functioning. The case was an example of medical arrogance-CAT scans and neurological tests were used to measure a human relationship, and the testimony of caregivers from different institutions was ignored. But most of the people I talked to about the case did not care about her cerebral cortex. They did not care whether or not Christine was capable of experiencing pleasure or pain or responding to the love of others. They saw a helpless person dependent on others for her care, without control over her basic functions, and they did not like the picture.
Some of those concerned with this problem would not remove food and fluid from those who are not terminal and who have a functioning cerebral cortex. But the ordinary people I am referring to do not want to live with a damaged but functioning cerebral cortex that results in limited or deranged behavior. They dread living with severe Alzheimer's Disease-unable to recognize family and friends, unable to care for themselves, obsessed with the idea that someone is stealing their clothes. Many feel the same about strokes and fear mental impairment, loss of bodily control and simple dignity.
The publicity surrounding PVS cases has certainly been used by the media as a stimulus for the euthanasia movement, but there is also a great deal of quiet publicity-in newspapers, in women's magazines, and on local TV stations-that shows an ugly picture of the lives of those who simply need care. These stories deal with the problems of living with Alzheimer's Disease or stroke damage, the abuse of the elderly by their children, nursing home horror stories, the cost of long-term care, and the problems of those who must work, care for their children, and also care for elderly relatives. The message is often veiled but clear-there is a strong possibility that the last years of life will be spent in a miserable state, devoid of human dignity, plagued by demented behavior and physical suffering, costly and burdensome to others. How much kinder it seems to give such people the blessing of a swift, painless, dignified death.
This is the great attraction of euthanasia: to spare ourselves the experience of the body's struggle with death. I believe that the only way to resist the seduction of euthanasia is to care-to nurse the terminal person with love, to manage pain better, to recognize and respond to the dying person as Ruth or Helen or Fred instead of as a problem to be solved. Dying people do not lose their personalities or their humanity. They still like lemon sherbet, fingernail polish, baseball news. They still need humor, consideration, loving caresses, and companionship.
Dying people can and should be nurtured-but what of the helpless person who is not dying? I believe the same things hold true. The quality of the helpless person's life depends to a great extent on the care received-on the competence, cheerfulness, and affection of those who do the caregiving. My grandfather, who lived for twelve years in a nursing home, was so paralyzed from the effects of Parkinson's Disease that he could hardly open his mouth, yet the nurses loved him and his family came and came often, bringing all the grandkids for him to enjoy-once even celebrating Christmas in his room so he could watch them open presents.
And as for people in PVS, we will never know what their damaged brains are capable of relearning unless we are willing to nurture them. It is highly unscientific, at the very least, to think that we know everything we need to know about the brain and that any behavior from a PVS patient that contradicts the current theory of "vegetablism" is irrelevant. Neurological tests and CAT scans do not constitute a theory. The behavior of the patient linked with the tests and scan are what we use to construct the theory. And since there is conflicting evidence about behavior, and since diagnosis is not infallible, it is inhumane to deprive people of food and water simply because current theory holds that they cannot feel it.
If our current theory is wrong, we will have caused a "bad death." Starvation and dehydration do cause suffering. They add to the cruelty and ugliness of death and reinforce the idea that the helpless person is no longer a member of the human family. I am sure that some will say that the sufferings of thirst and starvation can be alleviated, but it is asking a great deal of nurses and doctors to expect them to take away food and water and then treat the problems caused by taking away food and water. And if some compassionate doctors or nurses make an effort to discover effective sedation to remove the torments of thirst, if they try to keep the patient's electrolytes balanced and carefully adjust the amount of food and fluid (still using the feeding tube) in order to lessen the suffering as much as possible, then nature is no longer allowed to take its course. This death also becomes technological-and for the same reason: to make the patient as comfortable as possible while he dies.
If we are serious about fighting the euthanasia movement, I believe we must fight the idea that our status as members of the human family depends on our health, that under certain circumstances we will no longer be nurtured, our basic needs will purposely be ignored, and we will be abandoned to suffer and die. If we establish the idea that people no longer have lifetime membership in the human family, the practice of abandonment could become widespread-strongly encouraged perhaps by insurance carriers to cut costs. Then we may find ourselves no longer able to choose to die a death befitting the dignity of a man living to the end of his natural life, surrounded by concern for his comfort, and given the basic care his body still needs. Instead, our death will resemble the death of an unwanted dog who is abandoned by his owners and left to die of starvation and dehydration. Every responsible pet owner knows that it is a cruel fate for an animal, no matter how old or sick. And those who see a worn-out horse or an old dog left without food and water can call the police.
But if we decide that it is acceptable to treat humans worse than we treat animals, it should not surprise us if many people at the grassroots level decide that as along as they have to die like a dog, they would rather not suffer the fate of an abandoned stray. We should not be surprised if they work long and hard for the legal right to be quickly and painlessly "put to sleep" by the family "vet." Once this is accomplished, the evil inherent in such a practice will become all too apparent. As any member of the humane society can testify, disease and infirmity are not the only, or even the most common, reasons why Fido is put to sleep.