Christine Busalacchi, a Missouri woman suffering from serious brain damage, died on the 8th of March, 1993. The cause of death was starvation. Her case was not a nationally famous one, but it does serve to raise certain disturbing questions”questions that must confront the families of anyone who is helpless and unable to communicate effectively and that will also continue to confront not only medical care givers but judges and law enforcers as well. For Christine’s death followed the deliberate decision of the state’s attorney general to allow those involved in her medical treatment to withhold food and water on the grounds that life support was no longer beneficial to her.
This decision and its outcome stirred a good deal of local protest from people who felt that Christine’s family and doctors had made a dangerous decision”tantamount, at least in the eyes of some, to murder. In answer to this protest, the director of the Center for Health Care Ethics at the St. Louis University Medical Center, a Dominican priest named Kevin O’Rourke, published a piece in the March 19, 1993 St. Louis Post Dispatch entitled “When Life Support Doesn’t Help.”
In this piece Father O’Rourke examines what he calls the “assumptions” of the protesters, and in the course of doing so reveals certain assumptions of his own, assumptions that are important, not because they are his, but because they lie at the heart of the whole debate about life support for the helpless.
Father O’Rourke’s first assumption, and the basis of all the others, is that a severely brain-damaged person is better off dead. He does not, of course, put the case quite so bluntly. He writes, “No benefit to the patient results if mere physiological function is prolonged. Does it help people to continue their physiological function . . . if they will never regain the ability to think, talk, love, or relate to other people?”
Now, there may be no question when such words are used to apply to a person who is brain-dead. Medical science simply cannot resurrect dead tissue. But, as it happened, Christine was not brain-dead. And living brain cells can learn some of the tasks that the dead cells once performed. The first question, then, is whether brain-damaged people should be treated as if they were brain-dead. This is where the term Persistent Vegetative State comes in. A person in PVS is supposedly someone whose cerebral cortex does not function, and who consequently feels neither pleasure nor pain. Even if it should appear that such a person is responding, such responses are purely random.
Father O’Rourke is convinced that Christine was in PVS because the doctors said so. At least six board-certified neurospecialists made this diagnosis, basing their opinions on “PET scans” and “thorough clinical studies.” But several of her long-term caretakers, including at least one doctor, testified in court that she was not in PVS, basing their opinion on observations extending over months or even years. Since brain cells can learn other tasks, it is possible that a severely brain-damaged person like Christine could regain at least some ability to feel pleasure and pain, and to relate to other people. But obviously, only long-term observation could answer such a question. Only those who were in close daily contact with Christine could watch her responses to see if they were meaningful. Those who had actually been taking care of her did watch her and did notice that certain responses kept recurring in the same situations. They concluded that the responses had meaning. If, for example, she smiled at jokes, they concluded that she was responding meaningfully, perhaps to the joke, perhaps to the caretaker’s tone of voice or smile. Had she smiled at jokes, and at sad stories, and at the stock market report, it would have been reasonable to conclude that her smiles were random. Her long-term caretakers testified that she felt pleasure and pain, that she responded to music, and that she did, indeed, smile at jokes.
Why was such testimony ignored by the legal and medical authorities? It would not have been ignored in a court of law. If PVS were a crime, Christine would still be alive, for there would be far too much reasonable doubt to allow a guilty verdict, let alone a death sentence. It is hard not to think that some people did not care whether Christine was in PVS or only had a very limited ability to respond.
Father O’Rourke, like most of us, assumes that doctors know best. But medical science has its limits. A doctor can use a scan to see which areas of the brain are badly damaged, and he knows what functions go with which areas. But without long-term observation he cannot tell if brain cells are relearning other tasks. Furthermore, he cannot assume that a brain-damaged person will respond to a strange doctor in the same way that she would respond to a familiar caretaker. Perhaps she did not respond when the doctor called her name, but this does not mean that she was unable to respond. We understand this point better when we are dealing with those whose cerebral cortexes are not yet fully developed. We know that a baby may choose to smile at Mama and not at us. We have all met a two-year-old who counts to ten for Grandma, but not for us. No scan or clinical study can measure a person’s willingness to respond.
And what of the quality of the response? How much ability to “think, love, talk, or relate to other people” must there be before a brain-damaged person’s life will be legally protected? To whom must this ability be demonstrated? Who will establish the criteria? What will these criteria be? Father O’Rourke does not say, but he is perfectly prepared to speak of the need to assess the economic and psychic burdens on the family and society represented by helpless people.
There are certainly plenty of burdens out there to assess. All of us are helpless burdens when we are very young. Some of us will be burdens when we grow old. Cancer and AIDS can turn us into burdens at any age. And those with physical disabilities are not the only burdens. In an economic sense, everyone in prison or on welfare is a burden. Is it wise to allow those who are burdened to dispose of those who burden them? Should individual families have the right to define “beneficial” and “burdensome” however they please, so that one brain-damaged daughter gets food and water while another gets the “benefit” of death by dehydration?
But Father O’Rourke does not think this case will set a precedent. He finds such reasoning misleading “because it fails to recognize the vital ethical issue: Life support may be withdrawn only if it is ineffective or extremely burdensome. We must distinguish between life support that is beneficial for a person and life support that is not beneficial.” He says that the family that withdraws food and water does not necessarily intend to kill the patient, but only to “stop doing things that are ineffective or futile.”
Now the words “ineffective,” “futile,” or “burdensome” have a certain medical meaning. A treatment is futile or ineffective if it does not cure or arrest the problem. No one will say that antibiotics are futile if they are killing the staph germs. That is their job. No one will say that radiation therapy is futile if it is shrinking the cancer. Such treatments can be considered burdensome if they cause more problems than they solve”the antibiotics are destroying the patient’s kidneys, or the radiation is causing pancreatitis. In such cases the patient may have to stop treatment. But to my knowledge, these are the only instances in which medical therapy is considered ineffective, futile, or burdensome”either it is not stopping the disease, or it is causing life-threatening side effects or extreme suffering.
Were these things happening with Christine? Were her food and water failing to arrest a disease or causing her serious side effects or extreme suffering? On the contrary, her food and water were giving her the only benefit they have to offer. They were keeping her alive in a fairly comfortable, healthy state. This is all food and water can do for anybody; they do not cure brain damage. How, then, could Christine’s food and water be considered “futile,” “ineffective,” “excessively burdensome,” and “not beneficial”?
We do not stop radiation therapy for a cancer patient because it doesn’t cure her arthritis, and we do not stop administering antibiotics because the patient still has cataracts. We do not call a treatment ineffective or futile if it does not cure something it was never supposed to cure.
Why is all this stood on its head when the patient in question is severely brain-damaged? Why were the meanings of “beneficial” and “not beneficial” reversed for Christine so that keeping her alive was “not beneficial” and giving her food and water was “futile” and “burdensome”? True, the chances were slim that Christine’s condition would improve, but no one (yet) suggests that it is acceptable to withhold food and water from quadraplegics, though their chances of recovering are about as likely as Christine’s were. No one says that food and water are “futile” for people with muscular dystrophy or multiple sclerosis. Some of these people cannot feed themselves, and food and water will not cure them. But since they are mentally alert, there is no movement to consider their food and water futile and withdraw them.
But such examples do not mean that no one else is in danger. The brain-damaged are not the only people who cannot “think, love, talk, or relate to other people.” There are autistic children. Stroke victims. People with Alzheimer’s. And my Aunt Helen. She was an elderly woman, single, no children or husband, living on social security disability. She had some health problems, but she was able to care for herself until about ten years ago, when she became so confused that she had to be hospitalized. Severe Alzheimer’s was the diagnosis. She refused to eat because she was afraid of poison. A nose tube was used until her throat became raw. Then doctors told us that they could put in a stomach tube, although they seemed reluctant to do so. Or they could do nothing, and we were told that in three or four days it would all be over. Helen was able to feel pain and had some ability to talk and relate to other people. But her ability to think rationally was not there. Obviously, her doctors had enlarged Father O’Rourke’s criteria. We could have chosen to let a confused elderly woman die of thirst. We did not. We demanded that her medications be carefully evaluated. Some were stopped and some were changed. The confusion cleared up and my aunt was again able to feed herself. It’s hard to believe that Aunt Helen was the only person with Alzheimer’s ever to have her food and water considered “not beneficial” by doctors.
We can see the same thing happening when surgery that would not be questioned for a normal newborn has suddenly become “not beneficial” for a Down’s Syndrome child. Of course, in such cases as Christine’s and Aunt Helen’s, we try to fool our consciences by saying that we are merely stopping treatment and that it is the “underlying pathology the life support has been circumventing” that really kills the patient. However, Alzheimer’s and severe brain damage do not affect the digestive system.They merely render the patient helpless. If I take away milk from a baby, does it die because it has an underdeveloped neuro-muscular-skeletal system? I myself happen to be living on artificial life support and I know the difference between food and water and “medical therapy.” There is a medical difference, and although Father O’Rourke says not, there is an ethical difference as well.
“Medical therapy” is something added. Something that a normal, healthy person does not need. And medical therapy is not neutral. If given unnecessarily, it will upset a person’s normal functioning. This upset may be quite mild, as it would be if we were to treat a normal person for shock. Or it could be fatal, as it would be if we gave a normal person injections of insulin.
My artificial life support, which is necessary to treat short bowel syndrome, would damage a normal person, since it bypasses the digestive system entirely. If the person continued to eat, he would become obese; if he stopped eating, he would be at risk for bile duct obstruction. My life support, parenteral nutrition, allows dextrose, amino acids, and electrolytes to go directly into the bloodstream. But Christine’s and Aunt Helen’s food and water went directly to the stomach and were digested. In neither case was there an “underlying pathology” that was preventing the digestive system from working. And while it is true that a stomach tube is not a natural method of delivering food, it is not in the same category as parenteral nutrition. To make such a comparison would be like comparing a patient who has a urinary catheter to one on kidney dialysis. The stomach tube and the catheter help the body to perform its natural functions”they do not replace major organs. Since I have no intestine to speak of, food and water are indeed futile for me. No matter how much I eat and drink I cannot keep myself alive. This was not the case with Christine. Food and water were beneficial for her, but only if we consider that her life was still a benefit.
Calling food and water medical treatment eases the consciences of those who request and those who decree that they can be turned off. After all, if a cancer patient elects to stop treatment, we are not murderers if we decide to let him do so, since the treatment being stopped is either causing intense suffering or failing to arrest the disease. But Christine was not suffering from any disease. How, then, could food and water be considered a cure? Everyone needs food and water, but only sick or injured people need treatment”and as we know, some of these do survive without treatment. But no one has ever been able to break the body’s absolute need for food and water. The only result of withdrawing them is death, always and everywhere, with no exceptions. Father O’Rourke says that family members do “not necessarily intend to kill the patient” when they withdraw food and water. This is confusing desire with motive. If a person is brain-dead, most of us do not want him to linger on and on. Some of us are glad when AIDS or cancer patients who have gone through months or years of pain die. We feel great loss, but we are not ashamed to say that we are glad that the suffering is over.
Therefore we can understand Father O’Rourke, and others who honestly believed that Christine was no different from a brain-dead person, desiring her death. The thought of a mere body, living with no awareness of its surroundings, no ability to exchange a smile with another person, no ability to enjoy the feeling of clean sheets on a bed”it does not seem wrong to wish such a person dead, set free from the broken body that stubbornly refuses even to get sick. But to deny that this is what we want when we take away the food and water is merely self-delusion. There is no other reason to take away a healthy but helpless person’s food and water. There is no other possible outcome. Such denial is like pouring water on someone while saying we don’t intend for him to be wet. We may have good reasons for drenching him”his clothes were on fire, he was starting to faint, or perhaps he was dirty. But whatever our reason for doing it, he must be wet in order to receive the benefit, and we are not afraid to say that we intend for him to be very wet indeed.
What benefit does a person like Christine receive from death? We don’t know. We cannot contrast the limited life she had here with some “benefit” in her life hereafter, because we know nothing about it. Her body is now rotting; this is the only “benefit” which we know for certain that death has given her.
Father O’Rourke says that allowing her this “benefit” is not opposed to Catholic doctrine. Catholic doctrine admits life after death, and purgatory too, along with eternal torment for those who have not pleased God. There is, however, no hint (I would like to be corrected if I am wrong) either in Scripture or Church tradition that death is such a good thing that we may allow those who are burdensome to us to die so that they can go on and be happy in heaven”this despite the fact that there were many more such “burdens” in the world back when the New Testament was being recorded and throughout the centuries as Church doctrine developed. Perhaps we have forgotten just how much human wreckage there was, burdening families and society. More children were born brain-damaged because there were almost no Caesarians. A simple cut could cause a brain-damaging staph infection. Those who succumbed to smallpox, diphtheria, tetanus, scarlet fever, and other such diseases didn’t all die. Many of them lived on as cripples”brain-damaged, disfigured, or both. We seem to have forgotten what back-breaking work was needed to care for a helpless person when everything had to be washed by hand, when water had to be carried from a well, when an invalid’s food had to be prepared completely from scratch and spoon-fed. Yet the Church championed those who were burdens and ministered to them, considering that in caring for the helpless, one was really caring for Christ Himself.
It is evident that to Father O’Rourke, and to those who agreed with the decision to let her starve. Christine did not have this value. To them, her life was useless. The simple pleasures that she could and did enjoy”ice cream, music, a trip outside in a wheelchair”were not enough, not deserving of legal protection or even the benefit of the doubt. Therefore her food and water were taken away, forever ending the possibility that improvement might be observed or that medical science might discover ways to help her. Is it “beneficial” to a society that wants to preserve individual liberty that people’s lives should depend on how burdensome or beneficial they are? “Burden” and “benefit” can be defined in many different ways, and will vary from family to family and from doctor to doctor. Even medical ethicists disagree with each other. Ultimately, these definitions depend on one’s deepest beliefs about the nature of God and man. There is the potential for terrible cruelty and injustice if a person’s life hangs on the definition of a word. Such a thing is far too frail to bear the weight of something that cannot be replaced.
Nancy L. Harvey, a new contributor to First Things , teaches French at Cuba High School in Cuba, Missouri.