THE PRICE OF LIFE : How High the Cost Before It Becomes Too High?
MARTHA'S VINEYARD, MASS. — Was the fiercely expensive Philadelphia operation to separate Siamese twins who shared a single heart a humanitarian tribute to the sanctity of life? Or was it an unjustified waste of public funds and medical resources needed by others who are poor and sick? The parent’s own doctors in suburban Chicago said the babies should be kept free from pain and allowed to die. But surgeons at Children’s Hospital of Philadelphia offered to separate the twin girls, even though one would certainly die, the other would have only a 1% chance of surviving more than a few months, the quality of any life she could live if she did survive was doubtful and the total cost of the procedure might exceed a million dollars.
Kenneth and Reitha Lakeberg, the parents of the twins, decided to take the gamble. He said, “It’s like people win the lottery every week. Why can’t we win on life? Why can’t we gain a life here and defy the odds?” (They have no health insurance, but their home state of Indiana will contribute $1,000 a day and hospitals will assume the rest of the cost.) The operation was performed, and one twin, Angela, is still alive and doing well eight days after the operation, though she remains in critical condition.
Lakeberg’s question--Why not defy the odds when life is at stake?--is an important one, particularly now, when the United States is trying to make its medicine cheaper, fairer and more rational. The chief surgeon at Children’s Hospital gave one answer: “There has been a unanimous consensus,” he said, “that if it is possible to save one life, then it is worth doing this.” For ages, doctors have celebrated this “rescue” principle--never give up on life when any hope remains.
But we must face the fact that this is an impossible, even absurd, ideal. Scientists continue to develop phenomenally expensive diagnostic techniques and more and more heroic transplant procedures, for example, that offer significant life-saving opportunities in some circumstances, but only a remote chance of saving life or prolonging it beyond a few marginal months in others. Any nation that tried to provide every possible treatment, no matter how expensive, even when the treatment had only a small chance of working, would have little money left for obviously valuable medical policies, like immunization for children, or for education, or for sustaining an economy so that its people could have rewarding jobs. Its people would probably not, on balance, lead longer lives, and they would almost certainly lead worse ones.
So the rescue principle, noble as it seems, must be abandoned. What should replace it? President Bill Clinton’s health-care proposal is expected to guarantee all Americans a basic package of care. How should we decide what that basic package should contain--whether, for example, it should provide stupendously expensive neo-natal operations with only a marginal chance of success? Lakeberg’s remark about lotteries offers a helpful clue, though we should be thinking about the right kind of lottery--an insurance policy--and about an insurance decision made at the right time--in advance.
Suppose the Lakebergs had been people of average wealth, and that when they were married they had been offered the opportunity to buy, for an annual premium reflecting the true actuarial cost, one of two insurance policies. The first provided that if any of their children were born with a life-threatening defect, neo-natal treatment would be covered only if it offered a reasonable (say a 25%) chance of success. The second--much more expensive--provided that such treatment would be guaranteed even if it offered only the barest hope.
The Lakebergs might well have decided that it would be better for them and their family to buy the first policy, and to use the premiums they would save each year to benefit their healthy children in other ways--to provide better routine medical care, or better housing, or better education, for example--even though they knew that they were giving up the chance for a desperate gamble if they ever did have a defective child. Most people would make that choice, and it seems wrong that public money and scarce communal health-care resources should be distributed according to priorities so different from those people would have chosen for themselves, in advance, if they had an opportunity to do so.
We can generalize this approach. When we ask whether money the community might spend on high-tech medicine for particular conditions would be better spent in other ways, we should answer that question from the perspective of ordinary people’s own priorities. We should ask: Would most people buy insurance, in advance, to provide that technology for those medical conditions if they had the opportunity and could afford the probable premiums?
If we adopt that method, we will take into account not only the cost and expected benefits of that treatment, but also the age and prospects of the patient. Few people would pay additional insurance premiums year after year, and so sacrifice money that could make their real lives more rewarding and enjoyable, just to provide expensive medical treatment that might prolong their insensate lives if they ever become permanently unconscious. If so, it would be wrong for a national health-care system to provide expensive life-prolonging treatment for patients in persistent vegetative state.
Most people would, I think, make a similar decision about insurance for expensive medical care that could keep them alive for only a few months longer: They would think it much more rational to spend the money such insurance would cost, year after year, on better professional training or housing or more travel or recreation when they were young, because that would make their lives more rewarding and interesting, even though, perhaps, a few months shorter. That is an important conclusion, because a vast proportion of America’s health-care budget is spent on the last six months of people’s lives. If we base overall health-care decisions on judgments about what people would decide for themselves in this way, we will try sharply to reduce that kind of expenditure.
The Lakeberg’s tragedy poses a different question, however. How shall we allocate medical care at the other edge of life, at the beginning rather than at the end? We cannot answer that question without posing another that many people will regard as religious. What is the true tragedy of early death? Is it just that years of possible life will never take place? If so, we should spend more money and take more risks to save an infant’s life than an adult’s, and, on that reasoning, the Philadelphia operation may have been justified.
But the idea that the tragedy of death lies just in years of life lost doesn’t fit the convictions of most people. Most of us think that a late abortion is a greater tragedy than an early one, and that the death of a child or an adolescent is more heartbreaking than the death of a day-old infant. Most of us think, in other words, that the most terrible aspect of premature death is waste --the waste of the biological investment nature has made in every human life, and also of the personal, human investment made by family and society and, above all, by the person whose life it is, whose emotions, struggles, plans, projects and hopes give life a value that premature death cheats. On that view, the death of a young child or an adolescent, whose own investment of love and project is already very great but is as yet almost entirely unrealized, is the most heart-wrenching tragedy of all.
The death of newborn infants is a terrible sorrow, and, of course, we should use all appropriate resources to prevent it. But, at least for most people, an infant’s death is not as tragic as the premature death of someone older, whose life is under way in earnest. The investment others have made in the infant’s life is not as great, and it has itself made hardly any investment at all.
That is at least part of the reason, I believe, why so many people reacted to the news from Children’s Hospital not with excitement but with pain that resources had been spent that would have done much more good--avoided more genuine tragedy--used in other ways, to save lives of children already well begun, perhaps, or to make those lives less poor, frustrating and barren. True respect for human life was sacrificed, in Philadelphia, to bad slogans about sanctity and rescue, and, perhaps, to a dangerous love for heroic medicine for its own sake.*
