From a medical study at Mediscape, excerpted at First Things
Neonatal survival after withdrawal of artificial hydration and nutrition can last up to 26 days, according to a case series presented here at the 18th International Congress on Palliative Care. Although physical distress is not apparent in the infants, the psychological distress of parents and clinicians builds with the length of survival, said Hal Siden, MD, from Canuck Place Children’s Hospice in Vancouver, British Columbia.
“These babies live much, much longer than anybody expects. I think that neonatologists and nurses and palliative care clinicians need to be alerted to this,” he said. “The time between withdrawal of feeding and end of life is something that is not predictable, and you need to be cautioned very strongly about that if you are going to do this work.” He presented a series of 5 cases that clinicians at his hospice had overseen over a 5-year period. Two infants had severe neurologic impairment, 2 had severe hypoxic ischemia, and 1 had severe bowel atresia.
Despite this, there is one factor that medication cannot alleviate, and that is the visual signs of emaciation, said Ms. Keats. “The longer a child lives, the more emaciated he or she becomes. This is something that we as clinicians need to anticipate. You can alleviate some of the physical symptoms, but this is one symptom, or result of our action, that we can’t relieve. A critical factor for counseling is to anticipate the kind of suffering that comes with witnessing the emaciation. It isn’t something people can prepare themselves for.” Autopsies are often encouraged in such neonatal palliative care cases to help both parents and medical staff gain a better understanding of the reasons for the death, said Dr. Siden. Parents should be warned that the report will document the technical cause of death as “starvation” — a loaded word for all concerned. It is important that parents separate this word from any notion of suffering, he said.
“All of the children we’ve cared for have been in a very quiet, low metabolic state — not an agitated state — with no overt signs of hunger behavior. Whether they are neurologically capable of hunger behavior is another question, and I don’t know the answer. That’s why I am trying to understand better what they are going through, because I don’t want them to suffer,” Dr. Siden explained.
He emphasized the importance of more research into the physiologic processes that occur after withdrawal of fluids and nutrition so that clinicians can both inform and reassure parents. “There’s an ethical component to doing research. If you don’t do research yourself, you need to support those who do, because we desperately need to know more,” Dr. Siden asserted. “There’s a technical aspect to what we do, and we need to become really good at that because we need to be able to say to people, without a doubt, that we are going to do this and there is not going to be any kind of suffering. You’ve got to be very on top of your game.”
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By all means, let us distance ourselves from the implications of that loaded term "death by starvation." After all, these are infants who are severely defective. They have what the Germans used to call lebensunwertes Leben, or "life unworthy of life." What comment is necessary beyond the mere posting of this mengelestic research?