Are life-ending procedures for newborns acceptable, or should infants with severe disorders like spina bifida be kept alive even when their pain cannot be reduced?
In other words, is it okay to euthanize infants under some circumstances?
Such is the question posed by Dutch physicians Eduard Verhagen and Pieter J J. Sauer in an essay that appeared in this week’s New England Journal of Medicine. In case you were unaware, the Netherlands does permit euthanasia under certain circumstances, and I have to say, at least they are up front about it. Here we just choose to starve a person, and call it a “natural death.” Does the name Terri Schiavo ring a bell?
The doctors have developed guidelines, known as the Groningen protocol. “We are convinced that life-ending measures can be acceptable in these cases under very strict conditions,” the authors wrote.”
These conditions include the full and informed consent of the parents, the agreement of a team of physicians, and a subsequent review of each case by “an outside legal body” to determine whether the decision was justified and all procedures had been followed.
Newborns who might be considered for end-of-life decisions were divided into three groups. The first is made up of infants “with no chance of survival” because of severe underlying diseases. In the second group are babies who have “a very poor prognosis and are dependent on intensive care.” Although intensive treatment might help them to survive, “they have an extremely poor prognosis and a poor quality of life.”
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The third group has a “hopeless prognosis” and experience “what parents and medical experts deem to be unbearable suffering,” whether or not they need intensive medical care.
There are 15 to 20 cases of euthanasia each year in newborns who fall into the third group, in the Netherlands. The authors of this paper reviewed two cases about 10 years ago, and in both cases, the Dutch courts “approved the procedures as meeting requirements for good medical practice.”
I have seen quite a few infants die over the course of my nursing career. In the majority of cases, they were premature and just not viable. In other cases, the infants died after attempts at resuscitation–the full nine yards. And still in other cases, we pulled the plug on the ventilator.
There were yet other infants who arrived in the NICU only to die. We did nothing for them–they were either too small or too deformed. One that was particularly tortuous to look upon was a baby without a face. There was a small hole for a mouth, which allowed air to reach the lungs, and a gash in the head which I first mistook for an eye–then realized that it was bits of the brain peeking through. Yes, grotesque. The resident who brought the baby into the unit was white faced, like he was about to faint. It (sex was unknown due to lack of genitalia) was tightly swaddled, and the resident said that we were better off “not looking.” I thought so too, and didn’t.
But in a case like this, you have to wonder–was the baby suffering? Would it have been more humane to euthanize it? Or do we just let nature take its course?
I’m just throwing out questions, as I don’t have an answer. But matters of life and death because far less abstract when you have actually dealt with them up close. The faceless baby died about an hour or two after birth, but others like it can linger on.
What I admire about this paper is that the Dutch doctors have brought this issue out into the open. And they tell it as it is, and for what it is. They don’t try to pretend that they’re going to “allow a natural course of events” by not feeding the infants, for example. It’s euthanasia.
Now I know that people reading this are going to be horrified at the thought of intentionally killing an infant, no matter how badly the suffering, or how severe the deformities. But I once again must bring up Terri Schiavo, and the unnamed Terri Schiavos who have suffered a similar fate in our country. Why is humanely ending the life of an infant with a “hopeless prognosis” wrong or terrible, while starving a disabled woman to death fine and dandy? For anyone who thinks that killing the baby is wrong, but “passively” killing Terri Schiavo is right, I would be curious to hear the explanation.
And lest we be too critical of the Netherlands for their euthanasia policy, we have to remember that no one in that nation is denied healthcare. They have one of the lowest infant mortality rates in the world, as well as a very low rate of both abortion and unintended pregnancy. Citizens are cared for there, while in the US, we have over 40 million people without any type of health insurance.