When is euthanasia for newborn babies a good idea?
Two doctors in the Netherlands believe they know. They have developed a checklist that would allow doctors and families to determine whether a newborn is suffering so greatly, and without hope of a cure, that death would be a mercy.
Writing in today's New England Journal of Medicine, Drs. Eduard Verhagen and Pieter J J. Sauer ask an important question: 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?
Never an Easy Issue
The question is not a new one in medical circles. As the doctors themselves acknowledge, many infants' lives are ended each year in the Netherlands without any report to authorities.
Decisions to end life-prolonging treatment, or to not begin that treatment, are made regularly throughout Europe and the United States. In many cases, families wrestle with the issue by consulting with doctors and clergy. Authorities are not alerted and there is no media spotlight.
But situations like the Terri Schiavo case in Florida -- where the parents and husband of a severely brain-damaged woman have taken their fight over whether to withdraw her feeding tube to court -- reveal that euthanasia is never an easy issue to discuss, especially when it involves those who cannot speak for themselves.
The question of infant euthanasia is "part of appropriate pediatric medicine," said Glenn McGee, director of the Center for Medical Ethics Research at Albany Medical Center in New York state and editor of The American Journal of Bioethics.
"These babies are not being killed -- they are being appropriately cared for," McGee said. "Our society has gone off the edge in terms of protecting the vulnerable by forcing them to suffer."
Can Anyone Measure Pain?
But notions of suffering and quality of life are highly subjective and almost impossible to quantify. As Verhagen and Sauer write, "Suffering is a subjective feeling that cannot be measured objectively, whether in adults or in infants."
Dr. Ian R. Holzman, director of the newborn medicine program at Mount Sinai Hospital in New York, has struggled with making a prognosis for newborns throughout his professional life.
"When I was younger I believed I had a 'prognostiscope' that could tell who would do OK and who wouldn't," said Holzman.
"I am much less sure now since I have seen infants with conditions thought to be dismal who have survived and gone on to have lives much better than predicted," he said. "Sure, they are the exception, but it is such exceptions that should give all of us pause."
Developing the Groningen Protocol
The procedural checklist developed by the two Dutch doctors, both from the University Medical Center in Groningen, outlines four strict conditions under which euthanasia be considered acceptable.
The parents must agree fully to euthanasia, and a team of doctors must also agree. The medical condition and the prognosis must be clearly defined. And after the decision has been made, an outside legal body should determine if the decision was justified and if all procedures were followed.
One of Verhagen and Sauer's motivations in developing their checklist, which they call the Groningen Protocol, is to address the cases of newborn euthanasia that go unreported every year.
"We believe that all cases must be reported," they write, "if the country is to prevent uncontrolled and unjustified euthanasia and if we are to discuss the issue publicly and thus further develop norms regarding euthanasia in newborns."
Are We Sliding Down a 'Slippery Slope'?
But even the careful development of protocols for euthanasia is unlikely to quell professional and ethical concerns.
"I am troubled by the active termination of life for conditions that many would consider neither hopeless nor filled with unbearable suffering," said Holzman.
"The practice reported and protocol advocated represent a significant slide down the slippery slope," said Susan M. Wolf, professor of law and medicine at the University of Minnesota in Minneapolis.
Wolf noted that many people born with spina bifida go on to lead highly productive lives.
"The supposed requirement of unbearable suffering seems actually to mean that doctors and parents project a poor quality of life in the future," she said. "Allowing euthanasia on those grounds should cause great concern."