PrintMarch 12, 2011
Futilitarians
In his novel That Hideous Strength, C. S. Lewis wrote of a government-funded organization with the innocuous title of the National Institute of Coordinated Experiments (NICE). The novel was something of a "what-if" history of England, wherein the utilitarian tenets of eugenics and sterile materialism governed the policies and initiatives of government.
In 1999, life imitated art when the National Health Service (NHS) of Britain established an eerily similar government organization with the perhaps not-so-coincidental same acronym. In this case, however, NICE stands for National Institute for Health and Clinical Excellence. Like in Lewis' novel, this very real counterpart places formula above compassion, with the bored aplomb of an accountant balancing books.
Established by the Labour Party, NICE decides which treatments and medications are to be utilized by the NHS based on the principle of "the greatest good for the greatest number." Of course, this is not determined in a solely arbitrary fashion. Specific formulas are employed to monetize the value of life. Subjective judgments regarding "quality of life" and "suffering" are simmered down to a neat mathematical theorem by which life-sustaining treatments are awarded.
As I have previously written, NICE has an international arm that exports it's "valuation" formulae to foreign governments, including our own. With all aspects of personhood, including personal behavior and social usefulness, subject to a strict cost-benefit rationale, NICE parses human life into QALYs (quality-adjusted life years). The decisions regarding eligibility for treatments become necessarily subjective, since assessments such as "social usefulness" can't possibly be determined without discrimination. Once the words "I feel" have entered the equation, the result is no longer science, but instead white-coated opinion.
Baroness Mary Warnock, chief medical ethicist for the NHS, has previously stated that she felt dementia sufferers and other similarly burdensome people have a "duty to die." Whether that burden falls on their family or the state, Lady Warnock says she hopes that people will soon be "licensed to put others down" if those afflicted cannot care for themselves.
In 2006, The Royal College of Obstetricians and Gynecologists in Britain expressed the opinion that "active euthanasia" should be considered to spare parents the emotional and financial burden of bringing up seriously disabled babies. The Dutch have gone one better; they created the "Groningen Protocol" establishing a procedural standard for ending the lives of severely impaired newborns. Published in 2005 and named after the city where it was developed the protocol identifies three groups of children for whom doctors must make end-of-life decisions.
Group 1 represents children with no hope of survival, needing immediate and sustained artificial life support to remain alive. However, it should be noted that if such a child is removed from life support and does not immediately die, the protocol calls for the physician to intervene "on the child's behalf" -- and, quite bluntly, kill it. Of course, this is in the child's best interest, the parents are told, and to relieve the child's inevitable suffering.
Group 2 comprises infants who "may survive after a period of intensive treatment, but expectations regarding their future condition are very grim." Here the protocol veers farther from human decency by inserting the subjective assessment of "quality of life." What the profoundly disabled tolerate daily appears utterly intolerable to the able-bodied. There are millions of happy and contented people who have known life no other way.
Group 3 involves nothing more than the cold, brutal calculation of cost and convenience. These are babies with a poor prognosis "who do not depend on technology for physiologic stability and whose suffering is severe, sustained and cannot be alleviated." These are children who, with proper care, can live well into adulthood. These children are not necessarily presently suffering, but they are expected to in the future. The expectation that physicians should be empowered to make such determinations is grotesque in the extreme. Whether they are correct in their diagnoses or not is irrelevant. The question itself lies out of bounds.
Before we begin to think that the business of killing unwanted children just barely on one side of the womb is some odd Dutch idiosyncrasy, consider the fact that the information above was gleaned from a lengthy apology for the Groningen Protocol written and published by the esteemed American bioethics think-tank, The Hastings Center of New York.
Also consider the statements of one Dr. Daphne Austin, a leading official in the British NHS. She said recently that children born prematurely -- at 23 weeks or earlier -- should be left to die, as the cost of treating them could be better-spent on others with chronic conditions instead. She added, "There's a lot of emphasis on the parents' views and what they want. But somewhere in there, there needs to be an advocate for the baby." Presumably, the baby prefers death, and the quicker, the better. Perhaps it is instructive to note that Dr. Austin is in charge of telling hospitals and doctors how they should spend their NHS budgets.
Although recent reports have indicated that President Obama's recess appointment of Dr. Donald Berwick to be the Director of the Centers for Medicare and Medicaid Services will be allowed to expire at the end of 2011, it is important to remember that Berwick was one of the architects of NICE as well as a close colleague of Ezekiel Emanuel (elder brother of Rahm), who has written extensively on Comparative Effectiveness Research, the animating principle underlying the NICE structure. Emanuel, in addition to being a fellow of the above-mentioned Hastings Center, has also been named to the newly formed Federal Coordinating Council for Comparative Effectiveness Research, which received a staggering $1.1-billion funding endowment from the Obama stimulus bill. It would seem that NICE has arrived on our shores to a billion-dollar welcome.
At this point, I think it is appropriate to inform the reader that my wife and I have a profoundly disabled grandson who resides with us. We are solely responsible for his care. By way of clarity, I will say that his care involves all the same tasks as would be required in caring for a newborn, in addition to several other tasks related to his medical condition. But he and children like him are special in ways that only those who have spent time caring for them know. He is the happiest human being I've ever met.
We unabashedly consider our grandson the greatest blessing of our lives -- a gift so humbling as to drive us to our knees in gratitude again and again for every moment he is with us. I do not overstate this. His smiles are glowing, and his laugh is so infectious that crowds of strangers in stores, on the street, or simply within earshot always begin to laugh with him. At the time of this writing, my grandson is ten years old. If he had been born in the Netherlands, he would be a memory. He would have been in Group 2.
The author writes from Omaha, NE and may be reached at readmorejoe@gmail.com.
