BECAUSE MOST BIOLOGISTS AND MEDICAL SCIENTISTS CONTINUE TO operate on notions of reductionism—reducing parts of nature to their most elementary components—concepts and insights gained in the fragmented scientific way are often applied for limited purposes. Yet they may have profound moral and philosophical repercussions that ripple far beyond the restricted view of the scientist. Nowhere is this more apparent and difficult than in our ability to intervene in the fate of newborn infants.
In 1986, Baby Andrew, an eight-month-old boy in Ontario, was suffering from a rare form of blood cancer called myelomonocytic leukemia. His case focused interest on the question of where medical practices should stop.
During the 1950s, when I was a teenager, leukemia was a death sentence, and even today, all victims of the disease who are not treated soon die. But now the statistics on patients with its most common form, acute lymphoblastic leukemia, are astounding—with a regimen of radiation and chemotherapy, 90 percent have remissions, and more than half remain free of the disease five years later and are considered cured. Medical science richly deserves the accolades given it for many achievements of this century in improving the quality of our lives and the average life span we can expect.
Baby Andrew’s form of leukemia is less tractable to treatment, though up to three-quarters of the children with it who are treated may go into temporary remission, with perhaps a third of remissions lasting beyond a year or two. But treatment of children younger than a year old is far more difficult. They are usually treated more aggressively, yet their survival prospects are very poor.
Untreated leukemia patients do not suffer intense pain or prolonged weakness—they usually die from an inability to fight off an infection or from bleeding in the brain. Treatment involves the use of chemicals that kill rapidly dividing cells. In this way, blood-producing bone marrow is wiped out in the hopes of destroying the cancerous cells. However, rapidly dividing normal cells, most notably those of the gastrointestinal tract, are also affected. Thus, chemotherapy is accompanied by intense nausea and vomiting. The treatment creates a discomfort far more excessive than that of the disease itself. It takes four to six weeks for a doctor to determine whether the patient is responding to treatment. Overall, the prognosis was that at the very best, Baby Andrew had a one-in-four chance of long-term survival.
I have deliberately stuck to the statistical and medical facts, but they hide the terrible human dilemma of parents faced with the reality of a sick child, literally deathly ill at the very onset of life. Baby Andrew’s parents decided the odds of his survival after treatment simply weren’t worth the certain suffering that would be produced by the treatment. They chose, therefore, to refuse medical intervention, thereby assuring his early death. Child welfare authorities felt otherwise and took the case to the courts, where they succeeded in forcing the medical treatment of Baby Andrew.
The high degree of success of childhood leukemia treatment today is built on generations of parents who opted to allow doctors to try anything in the minuscule hope of some medical miracle. Those dying children were guinea pigs whose parents willingly let them become ciphers in accumulated data. And many of those children, though already assured of dying early, had their last weeks and months made all the more cruelly painful by the experiments of medical scientists. As a parent, I hope I’ll never be faced with that kind of terrible choice.
But the question still nags—how far do we go? I don’t know the current success rate of organ transplants, for example, but the first ones all had to end in failure, however carefully experiments were first done with animals. Perhaps there is a quality of life gained for liver or heart recipients that justifies the operation in young children today. But what was the rationale for the experience of Baby Fae, the infant recipient of a baboon’s heart? Her brief life was a grotesque media sensation that had no scientific or human justification. Will we soon transplant a miniaturized version of the Jarvik mechanical heart into younger and younger “patients”? Will we continue to create more children like David, who was imprisoned in a germ-free plastic bubble in the hope that there might be a breakthrough for dealing with his immune-deficient condition sometime in the future?
Somehow it seems to me that we have forgotten to ask a most important question—are there no limits? Has death become such an unacceptable prospect that we will pull out all stops to stave it off? In the name of medical “progress,” do we demand that everyone submit to medical intervention on the chance that a statistically significant prolongation of life may ensue? The imperative to fight death at all costs cannot stem from some profound commitment to the sanctity of life. If it did, doctors could not possibly support the current levels of abortion in major cities that terminate up to half of all pregnancies for reasons that have nothing to do with the health of the woman or the fetus.
In an increasingly secular age, science seems to have cut us loose from any sense of place and meaning. Cosmologists inform us that our Sun is a very ordinary star among billions in the Milky Way Galaxy which in turn is just one galaxy among billions. Biological science indicates that life arose on this planet by chance, that we have the form and shape that we do not from a divine creation but because of the vagaries of environment and natural selection. Bereft of meaning and alone in the universe, we find death all the more terrifying. So we choose to fight it, and each time death occurs we must admit to defeat by the forces of nature. But in fostering the notion that through science and research human beings can leap the boundaries of nature and free ourselves from the dictates of our own biology, we have created something even more frightening than death—massive medical intervention to prolong the process of dying. And it is an innocent infant with no fear of death who makes us face up to this terrible reality.
At the other end of the cycle of life, medical science and technology have derived powerful tools to intervene in the dying process, thereby rendering a definition of death much more difficult. Prolongation of life for its own sake has thrust us into the uncomfortable position of trying to play God.
On December 1, 1986, my twin sister’s eldest child, Janice, fell into a deep coma from which she never regained consciousness. She was twenty-seven years old. Viral encephalitis swept through her brain, causing massive and irreversible damage. For four months, my sister and her family sat in vigil as medicine’s arsenal of tools—tranquilizers to reduce the convulsions, antibiotics to limit bronchial infection, intravenous feeds to sustain nutrition and fluids—kept Janice “alive.” I was astounded by the tenacity of the evolutionary mechanisms operating in Janice’s body to maintain life.
Three years earlier, returning home from a movie with my father, my mother suffered a massive heart attack. She was seventy-four and for years had been showing the progressive memory loss of Alzheimer’s disease. Fifteen minutes after she collapsed, she was resuscitated by paramedics, rushed to a hospital, and put on a respirator in intensive care. Oxygen deprivation had permanently damaged her already deteriorating brain, but as with my niece, all Mom’s survival mechanisms had kicked into action and she “lived” for another week.
It is one of the ironies of the twentieth century that the great success of modern medicine has made death so much more ambiguous and, in many cases, agonizing for the patient and family. A century ago, my mother and niece would have had rapid and humane deaths. Don’t get me wrong. I wish my mother and niece were still alive and healthy, and I am grateful for the emergency centers and extraordinary techniques and expertise now available in crisis circumstances. But is it monstrous to hope for death when the medically managed process of dying seems driven only to stave off at all costs an inevitable death? Often those costs are increased pain without a corresponding improvement in the quality of life that is gained.
We should not forget that no doctor has ever “conquered” death; at best, death is postponed. Like all other life-forms, each of us will die, and no amount of scientific research and heroic measures will ever change that. What we are rapidly accumulating is an ability to intervene and disrupt the natural course of events that (still) lead to unavoidable death.
Today, medicine is a costly and complicated business. We have dramatic surgical techniques, diagnostic machines, and an array of powerful drugs. But in a society in which nutrition and sanitation have virtually wiped out major killers of the past, new technology itself drives doctors to the treatment of ever more rare and exotic conditions. Whereas premature babies weighing less than 2 kilograms (4 pounds) once had a poor chance for survival, today they routinely make it. But that means that a 1-kilogram (2-pound) baby becomes a potential target for intervention. Once-lethal congenital defects are being corrected by radical surgery on newborn infants and even, in some cases, on fetuses. At the other end of life, has death become so terrifying that we’d prefer to be tethered by a 2-meter (6-foot) tube to a machine that keeps a mechanical heart pumping than to die of heart disease?
Once medical science has made new techniques available, we can’t deny or revoke them. But when I read heart-rending stories about children who die before they can receive a third or fourth liver transplant, I feel relief for the child.
By intervening in the process of death, we create novel situations where there are often no biological models to guide us—essentially, doctors create a new kind of human being. A simple example is the development of a shunt to allow the draining of the fluid that often builds up in the skulls of children with spina bifida. Developed by an engineer who was horrified by the cranial swelling in his spina bifida child, that invention eliminated much of the brain damage and the disfiguring buildup of fluid in the skull. Children who before the shunt almost always died now survived.
Only then was it found that spina bifida is not a simple condition. The prognosis for life with the shunt varied from child to child. Based on experience, doctors found that the efficacy of installing the shunt depended on the spinal lesion’s position, size, and severity. So today, in many British hospitals, doctors assess spina bifida infants at birth and place them in different categories. Some receive the shunt and every effort to provide a high quality of life, whereas others are allowed to die. It was technology itself that created this sorrowful dilemma.
There are many who do not want to face up to the decisions that now have to be made. Aiming for life at all costs, regardless of its quality, simply does not take into account the reality of today’s technologically sophisticated world where issues are far more profound and difficult than they once were.
But medical doctors and all those who have lived with the agony of seeing loved ones suspended in that technological twilight between life and death cannot avoid the issues