The last 50 years have been a busy time for the field of medicine. We have made tremendous leaps in our ability to diagnosis and treat disease. For example, prior to the 1960s if a person's kidneys failed, he would be out of luck, but with the invention of dialysis this person can continue to live today. One specific area of medicine in which technology has made an incredible impact is in the treatment of premature infants.
Bob Boyle, director of the University Medical Center's neonatal intensive care unit, likes to illustrate this with the example of Patrick Bouvier Kennedy, the premature child born to President and Mrs. Kennedy in 1963. Patrick was born at a developmental age of 34 weeks, which would make him approximately six weeks early. Because his lungs were not fully developed, he was unable to breathe effectively, and he died two days later. Only 40 years ago, Boyle stressed, nothing could be done to save the child of the President of the United States of America; yet, even people without basic health insurance today can have children at a developmental age of 24 weeks that survive to go home and live a normal life.
A child like Patrick Kennedy, born six weeks premature, is now a "no-brainer" with a survival rate of 98 percent or higher. The difference between these two time periods is that we have become extremely skilled at treating undeveloped lungs by the usage of mechanical ventilators, peripartum steroids, and a chemical called "surfactant." Leaving the details of how these interventions work for another day, the big picture is that the premature infant can survive until his or her lungs are able to develop enough to survive without assistance. With such technology, even children born at 23 weeks developmental age have a chance to live.
When we focus solely on mortality (the percentage of premature infant deaths) our progress sits as a shining example of human triumph over tragedy, but if we dig deeper into the associated morbidity (the percentage of diseased or disabled infants), concerns begin to emerge. Imagine that we have two scales, one for mortality (baby lives vs. baby dies) and one for morbidity (child has no developmental delays vs. child has mild, moderate, or profound disabilities).
As we move from "full-term" (40 weeks) towards "extremely premature" (22 weeks or less), the mortality rate increases until we eventually get to 100 percent (or a survival rate of 0 percent). If we would look at the morbidity as we make this same move, it would be, on average, slowly increasing. This means that it is possible that while 15 percent of children survive, 25 percent of those survivors may suffer from a profound disability that does not even allow basic interaction with their environment. It is in this mixing of morality and morbidity that we find our ethical dilemmas, and it is where we run into the question of parental choice and authority.
Imagine a case in which a child is born at a development age of 23 weeks. The infant's physician tells the parents that according to the latest data collected from several different U.S. hospitals, the chance of this baby surviving is 10 percent. (I am just generating these numbers and though they have some basis in reality, they do not represent actual data). The parents seem willing to continue with treatment of the child until they learn that if the child lives, she will have a 50 percent chance of being profoundly disabled. The parents decide that they do not want to risk their daughter living a life where she could not interact with others, and they decide to stop treatment. In this case, although it may raise some flags in our minds about the devaluing of the persons with a disability, we could all probably understand how the parents' decision.
But begin to slide these numbers around a bit and watch the fog start to cloud our judgment. What if the morbidity rate was 30 percent or 20 percent, and what if the risk was only moderate disability? Would we still support the parental decision to withhold treatment?
Some people see this as the right of a parent; others see it as the equivalent of child neglect (in fact, laws forbidding the non-treatment of babies because of a disability such as Down Syndrome are often linked to state child abuse/neglect laws). This is question that we will continue to face in the future: Who has the power to make these decisions? Should the government establish laws requiring the medical treatment of all children? Should physicians make the call, or can parents decide what is in the best interest of their child?Also, what influence do the availability of free services for children with disabilities and the number of persons ready to adopt profoundly disabled children have upon our conclusions? Because of our medical successes, this difficult decision is now one of the problems we face.
If you are interested in bioethical issues such as parental rights in neonatal decision making, check out the Bioethics Society at U.Va. They host speakers and hold movie nights to increase interest in and discussion of such issues. Also, the mailing list "phil-bioethics" sends out notices of meetings and events associated with bioethics.
Patrick Jones is a bi-weekly columnist. He can be reached at pjones@cavalierdaily.com
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