[I thought this item would be of interest to many readers of this blog. --mp]
The NewYork Times
March 10, 2005
When Torment Is Baby's Destiny, Euthanasia Is Defended
By JOHN SCHWARTZ
abies
born into what is certain to be a brief life of grievous suffering
should have their lives ended by physicians under strict guidelines,
according to two doctors in the Netherlands.
The doctors, Eduard Verhagen and Pieter J. J. Sauer of the
University Medical Center in Groningen, in an essay in today's New
England Journal of Medicine, said they had developed guidelines, known
as the Groningen protocol. The guidelines have been described in some
news reports over the last several weeks, and the authors said they
wrote their essay to address "blood-chilling accounts and
misunderstandings."
"We are convinced that life-ending measures can be acceptable in
these cases under very strict conditions," the authors wrote. Those
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.
Stephen Drake, a research analyst at Not Dead Yet, an organization
based in the United States that views euthanasia and assisted suicide
as threats to people with disabilities, said "there's nothing
surprising about the medical profession wanting to formalize and
legitimize practices that have wide acceptance in the medical community
worldwide," and added, "Obviously, we're against that." The Groningen
protocol, he said, is based on "singling out infants based on somebody
else's assessment of their quality of life."
Doctors commonly abort fetuses when grave medical conditions like
Tay-Sachs disease are diagnosed in utero, and after birth will commonly
withdraw treatment from infants with no hope of survival, or even end
the lives of some of those newborns. In a telephone interview, Dr.
Verhagen said that he and Dr. Sauer were trying to bring a measure of
accountability to acts that go on every day around the world. "Given
the fact that it is already happening," he said, "we find it
unacceptable that it is happening in silence."
In the Netherlands, euthanasia is legal for patients older than 16 who request it.
"The question under consideration now is whether deliberate
life-ending procedures are also acceptable for newborns and infants,
despite the fact that these patients cannot express their own will,"
the authors wrote. "Or must infants with disorders associated with
severe and sustained suffering be kept alive when their suffering
cannot be adequately reduced?"
The doctors divided the newborns who might be considered for
end-of-life decisions into three groups. The first is made up of
infants "with no chance of survival" because of severe underlying
diseases. Babies in the second group 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." 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. Within
this group, the doctors include "a child with the most serious form of
spina bifida," a condition in which the spinal column does not close
completely.
According to the doctors, in the Netherlands there are 15 to 20
cases of euthanasia each year in newborns who fall into the third
group. Two cases reviewed by the authors resulted in court cases in the
mid-1990's, and in each case, the Dutch courts "approved the procedures
as meeting requirements for good medical practice." The authors also
examined 22 cases of euthanasia of newborns with severe cases of spina
bifida that have been reported to district attorneys' offices since
1997. None of those doctors were prosecuted.
Publishing the Groningen guidelines "is not about our preparedness
or joy in ending life," Dr. Verhagen said. "It's another phase, the
phase that comes afterward. If you end the life of children, are you
prepared to be accountable for it?"
Douglas J. Sorocco, a lawyer in Oklahoma City who has spina bifida,
said that doctors might be quick to classify a baby as a hopeless case
who might, with the right medical care, lead a happy and productive
life. He said he might be classified as having "the most serious form"
of the condition, since he was born with an open spine.
"People with spina bifida are having families, and making a
contribution to their communities," said Mr. Sorocco, who is chairman
of the board of directors of the Spina Bifida Association of America.
"I would say I have a life worth living. My wife would say I have a
life worth living. My family would say I have a life worth living."
Dr. Verhagen said that he did not question the quality of life of
people like Mr. Sorocco, but argued that there was no comparison
between those healthy people and the developmentally devastated
newborns described in his paper.
Arthur Caplan, a professor of bioethics at the University of
Pennsylvania, said he could not imagine such guidelines and practices
becoming the norm in the United States. "It's not acceptable to the
culture," he said.
The doctors in the Netherlands appeared to agree. "This approach
suits our legal and social culture," they wrote, "but it is unclear to
what extent it would be transferable to other countries."
OS
ANGELES - Aldous Huxley long ago warned of a future in which love was
beside the point and happiness a simple matter of consuming
mass-produced goods and plenty of soma, a drug engineered for pleasure.
More than 70 years later, Dr. Peter C. Whybrow, the director of the
Semel Institute of Neuroscience and Human Behavior at the University of
California, Los Angeles, has seen the future, and the society he
describes isn't all that distant from Huxley's brave new world,
although the soma, it seems, is in ourselves.
