In a recent episode of the podcast Freakonomics, Dr. Atul Gawande contrasted the adoption rate in the 1800s of two new technologies: anesthesia and antisepsis. An anesthetic gas, which could be used in surgery, was discovered and first used in Boston, and “…within two months of publishing the result that a gas could render people insensible to pain, it was being used in every capital in Europe. There’s no internet. You had to send news by boat and horse. And within two months people were using it in the capitals of Europe, and by six years later there wasn’t a hospital in the country that was not delivering anesthesia care.”
Compared to anesthesia, the adoption of antisepsis was very slow, even though sterilizing equipment and washing hands could cut the rate of infection by up to eighty percent. Since infections were often fatal, an eighty percent reduction meant a huge savings of lives. And yet, according to Dr. Gawande, “a generation later, you still haven’t gotten to half of the profession doing it.”
The difference in the adoption rates of the two new technologies was caused by the fact that anesthesia helped the doctors as much as it helped the patients: “Surgeons don’t like having a screaming patient on the table. They had to do their operations in 60 to 120 seconds because you just didn’t have that much time when the orderly is holding people down. And having a patient asleep meant you could be meticulous—you were so much happier as a surgeon. And so this was a win-win for both.” By contrast, antiseptic protocols didn’t do anything for the doctors, and so they had no incentive to use them.
This brings us to the fundamental fact that medicine is not practiced solely for the good of patients. The care that a patient receives is impacted by many other considerations, including the good of caregivers, plus financial issues, and also the broader ideology of society regarding health care.
Which brings us to Alfie Evans, the young child who died after a hospital in England removed his life support and refused to release him to his parents so that they could seek other treatment elsewhere.
In such cases, we are often told by doctors or by jurists that they are acting to relieve suffering. But we have to ask whose suffering is being relieved? It can’t be the suffering of the actual patient. In these days of closely monitored anesthesia and even medically induced comas, there’s no reason to think that young Alfie or any other patient needs to be in chronic pain.
They were not relieving the suffering of the parents who wanted to keep him alive. His parents were willing to do whatever they could in support of their child.
No, it seems that the suffering to be relieved was the suffering of other people who had to see him in a pitiable condition. The people unwilling to suffer were those caring for him—doctors, nurses, other hospital personnel—who were forced to see him every day and did not think he would improve physically and so had no reason to be burdened by him any further. Caring for a seriously ill child is inherently emotionally draining, after all, and it is only natural to wish for an end to it. Misery may love company, but company hates misery.
His caregivers likely looked at him and thought, “If I were in that situation, I wouldn’t want to live.” So, part of the suffering being relieved is the vicarious suffering of those seeing a bad situation, thinking about how they’d feel, and deciding they’d rather be dead. It’s ever so much easier to decide that being dead is in someone’s best interest when you aren’t that someone.
The empathy of saying “I wouldn’t want to live like that” is one of the most pernicious emotions in modern society. It is perhaps the main reason why almost no Down Syndrome children are allowed to be born. Down Syndrome children certainly don’t appear to be unhappy. In truth, they seem quite happy. The problem isn’t the unhappiness of Down Syndrome children, but rather the unhappiness of others looking upon them, seeing their developmental delays and challenges, and thinking that they wouldn’t want to live that way. It’s certainly understandable that a parent would be reticent of taking on the challenge of raising a Down Syndrome child, not so much because of the extra physical care needed as because of the psychic burden involved. We can all understand that.
We can all empathize with such parents.
But that doesn’t make it right.
Scientists are developing more and more tests that move us closer to the day when no unhealthy baby need ever be born. The day may come when seeing a child with Down Syndrome or spina bifida or cerebral palsy will be as unusual as seeing a child in an iron lung. CBS recently ran a segment reporting that the abortion rate for children in Iceland who test positive for Down Syndrome is approaching 100 percent. In Denmark, the termination rate is 98 percent. (The United States lags behind Europe with only a 67 percent termination rate.) The day cannot be far off when most or all genetic disorders will be similarly eliminated—not by fixing the disorder but by killing the carrier.
Down Syndrome and other prenatal testing isn’t health care for the patient. It is health care meant to shield the rest of us from the patient.
As at the beginning of life, so at the end of life, where “death with dignity” does not spare elderly or sick patients from indignity so much as it lifts a burden from the rest of us.
More and more these days we work to put suffering and death where we can’t see it. As we move further away from a religious understanding of the world, we can perceive less and less purpose in suffering. One of the great indictments of God by modern society is that he permits suffering. Once Man is in charge, you can be sure he won’t make that mistake.
So in a sense, the doctors and the courts of England spoke for us all when they put Alfie out of our misery. We should thank them, right?