People instinctively shy away from situations where someone–implicitly or explicitly–must decide who should live and who should die.
A few doctors—transplant surgeons, neonatal specialists—make such decisions. But the rest of us don’t, nor do we bring them up when discussing the broader problems of health care.
Unfortunately, our unwillingness to talk more openly about life-and-death questions means that more people die than should.
This observation came to me, ironically, when I heard the pleasant news on Monday that the twin Guatemalan girls, born joined at the head 18 months ago and separated in August by doctors at a California hospital, returned home. With so much news of violence and suffering, it’s nice to hear something positive.
However, one article I read about the girls contained some cruel ironies. It said that, in addition to time donated by physicians, the cost of the twins’ seven-month stay at a UCLA was about $2 million. It also noted that most of the population of Guatemala has poor access to medical services and that child mortality there remain very high.
Health program specialists in developing countries assert this rough rule of thumb: If the mortality rate between birth and age 5 exceeds 100 per 1,000, a life can be saved for $250 or less. If the rate exceeds 250 per 1,000, as it still does in some very poor areas of Latin America, saving a life costs $100 or less.
If someone controlled $2 million and could save 8,000 small children from death in Guatemala or instead give two conjoined twins a tenuously better life, the optimal decision might be distressing, but it would be clear. Spend the money on 8,000 rather than two.
That wasn’t the situation with the twins, however. Various people and charities donated money for their medical expenses. But would the same individuals and institutions offer the same amount to fund programs to reduce child mortality in Guatemala? Not likely, even though many more lives could be affected.
This disparity is unfortunate, but it is a fact of life, driven in part by the willingness of people to give money when the need somehow gains broad media attention. For example, after the World Trade Center attack, blood donations nearly overwhelmed the Red Cross. Just this week, on the other hand, newspapers reported that many blood banks are down to only a few days’ supply.
Given human idiosyncrasy in charitable giving, the question of how society can allocate resources to minimize premature deaths is a difficult one.
Throughout human existence and in most traditional societies, neonatal death rates for children with birth defects are often an order of magnitude higher than the already high rates for poor children as a whole.
They die because of a lack of appropriate medical care but also because of neglect. When families are at the edge of physical survival, expending time, money and food on a malformed or chronically ill child may threaten the survival of the family as a whole.
The young Guatemalan parents who succeeded in getting their daughters to Los Angeles for treatment did so under the most basic and human of motivations. They are, however, exceptional. Most children born with similar birth defects in poor households around the world would eventually just die.
Not long ago, the same was true in Minnesota. A much-loved country doctor in my hometown had a saying: “If I had only gotten there in time, that child would never have lived.”
His irony was intentional. He was emphasizing it was his practice to kill babies born with any but minor birth defects. This took place decades ago; the good doctor has been dead for half a century.
I hasten to add that, while the doctor practiced in a conservative Christian Dutch Calvinist town, on none of the three completely independent occasions that I heard his statement repeated did anyone utter any hint of moral condemnation. Rather, there was a pragmatic consensus that the tradeoffs in rural life during the first decades of the 20th century were harsh.
Nor was the old doctor alone in his actions. Neurologist and popular writer Oliver Sacks, in his marvelous recent memoir “Uncle Tungsten,” relates how his mother, a physician in London in the 1930s and 1940s, similarly snuffed out the lives of children born with serious problems.
Dr. Sacks and the old physician back home made a quick resource allocation decision when they delivered babies whose survival would have placed inordinate demands on their families. It was better that such children die quickly and painlessly than after a prolonged struggle that would only serve to drain family resources.
Many will argue that times have changed, that we no longer live in an age where resources are so constrained that all families cannot have full health care.
I think this is true. But it is also clear that, for whatever reason, our democratic political system has not devised a health care delivery system that is efficient in providing such care to all.
We continue to have a very patchwork system. Most people do eventually get some care regardless of their circumstances, but our society spends a very high proportion of total output to achieve health outcomes that are no better than those in nations that spend much less. We continue to spend inordinate sums of money on heroic interventions in the late stages of life and to not spend enough on basic public health measures, which save more years of life at a lower cost.
Many people are dissatisfied with the U.S. health care system, for a wide variety of reasons. There is no consensus on how to change it.
Part of the reason why is because we shrink from discussing these tradeoffs. We tinker at the edges and continue to drift at best or, at worst, spend more money to achieve less.
© 2003 Edward Lotterman
Chanarambie Consulting, Inc.