Infants and newborns for whom such end-of-life decisions might be made can be divided into three categories First, there are infants with no chance of survival. This group consists of infants who will die soon after birth, despite optimal care with the most current methods available locally. These infants have severe underlying disease, such as lung and kidney hypoplasia.So, like all Gaul, sick babies can be divided into 3 types: the hopeless, the very poor prognosis, and the infants that really are quite sick and the doctors should make a decision about their future quality of life. So far, so good. I don't think that the first two categories are as troubling as the third. In the first two cases, with or without care, there is no viable prognosis for the infant. However, in the third case an active decision is being made to terminate life that would otherwise survive (albeit in a limited context). Because the third category is the most troubling, the good doctors continue to explicate it:
Infants in the second group have a very poor prognosis and are dependent on intensive care. These patients may survive after a period of intensive treatment, but expectations regarding their future condition are very grim. They are infants with severe brain abnormalities or extensive organ damage caused by extreme hypoxemia. When these infants can survive beyond the period of intensive care, they have an extremely poor prognosis and a poor quality of life.
Finally, there are infants with a hopeless prognosis who experience what parents and medical experts deem to be unbearable suffering. Although it is difficult to define in the abstract, this group includes patients who are not dependent on intensive medical treatment but for whom a very poor quality of life, associated with sustained suffering, is predicted. For example, a child with the most serious form of spina bifida will have an extremely poor quality of life, even after many operations. This group also includes infants who have survived thanks to intensive care but for whom it becomes clear after intensive treatment has been completed that the quality of life will be very poor and for whom there is no hope of improvement.
Confronted with a patient in the third category, it is vital for the medical team to have as accurate a prognosis as possible and to discuss it with the parents. All possible measures must be taken to alleviate severe pain and discomfort. There are, however, circumstances in which, despite all measures taken, suffering cannot be relieved and no improvement can be expected. When both the parents and the physicians are convinced that there is an extremely poor prognosis, they may concur that death would be more humane than continued life. Under similar conditions, a person in the Netherlands who is older than 16 years of age can ask for euthanasia. Newborns, however, cannot ask for euthanasia, and such a request by parents, acting as the representatives of their child, is invalid under Dutch law. Does this mean that euthanasia in a newborn is always prohibited? We are convinced that life-ending measures can be acceptable in these cases under very strict conditions: the parents must agree fully, on the basis of a thorough explanation of the condition and prognosis; a team of physicians, including at least one who is not directly involved in the care of the patient, must agree; and the condition and prognosis must be very well defined. After the decision has been made and the child has died, an outside legal body should determine whether the decision was justified and all necessary procedures have been followed.
This wouldn't be an article in the Journal without data, however. Our authors now present a table of acceptable considerations used to end the life of a newborn in 22 cases of "very severe...spina bifida."
I think we're starting to see why people find this Groningen Protocol so troubling. There's a startling expansion of power on the part of the physician (admittedly parceled out into advisory bodies) to make decisions, early in life, about the individual's "predicted lack of self sufficiency" or "predicted inability to communicate" or even (irony) "long life expectancy."
Verhagen and Sauer conclude their article by suggesting that far more than 15 to 20 newborns a year are being euthanized and their hope that the Groningen Protocol will provide guidelines and requirements to more systematically implement infant euthanasia.
That's a very exhaustive protocol, including the need for parental informed consent, and advice for how the doctors should advise, consult, and clarify their decision about euthanasia.
Dilemmas regarding end-of-life decisions for newborns with a very poor quality of life and presumably unbearable suffering and no hope of improvement are shared by physicians throughout the world. In the Netherlands, obligatory reporting with the aid of a protocol and subsequent assessment of euthanasia in newborns help us to clarify the decision-making process. This approach suits our legal and social culture, but it is unclear to what extent it would be transferable to other countries.
Transferable indeed. Tony Sheldon, writing a near-instant response in the British Medical Journal notes how Verhagen became, almost overnight, a widely hated man.
Verhagen asks, "If I have no techniques, no options to treat, if palliative care is not an option, what do I do? Do I send the child away, or really help it and hasten its death?That's just not adequate, however. Verhagen is careful to locate his remarks within a Dutch consensus. It is certainly true that the Netherlands is more amenable to assisted suicide than other nations. Moreover, there is something admirable about Verhagen's frank address of these concerns. Far from shirking the question (or simply tolerating the status quo of unreported physican activity) he has directly confronted this sensitive medical issue:
"We are not making this up. Horrible diseases do exist where a child is suffering unbearably but will not die immediately."
Last autumn he attempted to make politicians in The Hague take notice by revealing that a joint local protocol had been drawn up by paediatricians and the public prosecution service in Groningen under which paediatricians who deliberately ended the lives of neonates would not be prosecuted for murder if they followed strict criteria. Verhagen then called for a national protocol and a multidisciplinary committee to advise in such cases.
Within weeks he had become an international hate figure. Doctors in Groningen were painted as barbarians proud of killing babies, and the Vatican compared the doctors' practices to those of the Nazis.
Verhagen's own desire to confront the issue was sparked by a dilemma involving a newborn baby with a severe and untreatable form of a rare inherited skin disease, epidermolysis bullosa. This causes the skin to blister on contact, which can result in infection, sepsis, and death. The child was in severe pain whenever the bandages were replaced and was unlikely to live long. The parents did not want their child to suffer. The public prosecutor said, "Do what you have to do," but gave no assurance that a murder charge would not follow. Verhagen decided that, in such circumstances, he could not help the child to die. The child was discharged and died a year later from an infection.I certainly agree that silence--or a unspoken status quo--is far more hazardous than a transparent and agreed-upon protocol. Although the cold facts might be distasteful it is important to confront the issues which are (apparently) routinely faced by medical practioners and families.
Meanwhile Verhagen became aware that doctors in his department deliberately ended the lives of newborns, but in secret.
A desire among the public prosecution service to encourage dialogue between the legal and the medical world allowed Verhagen to act. In 2001 he invited a local magistrate to tour a neonatal intensive care ward on a normal day. Verhagen claims that the magistrate was "amazed" at what he saw. "People do not understand. It is not just about deliberately ending life. We are dealing with death on a neonatal intensive care ward every day, children are dying, decisions are being taken to stop or whether to start treatment."These are, obviously, judgment calls, and, on balance, suspect ones. Why are teams of doctors making decisions about the "pointlessness" of treatment for disabled infants? What is unacceptable about Verhagen's own decision to let nature take its course with the child with the skin infection? Is not some life, even a year of life, more humane than euthanasia?
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Examining the medical reports, the local advice not to prosecute, and the national decision to accept that advice, Verhagen realised that in every case the same argument was accepted. Although the newborns were not dependent on intensive care, the doctors accepted "deliberate termination of life" because of "the presence of hopeless suffering, with no means of alleviating the suffering."
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So what kind of "exceptional cases" could the estimated 15 among 200 000 births a year be? The 22 reported cases were all of severe spina bifida or hydrocephalus. But Verhagen stresses that 99.9% of babies born with spina bifida are treatable and go on to lead fulfilling lives. However, different specialist teams all agree that in some cases of spina bifida involving brain damage and other congenital malformations treatment is pointless. Another example is severe hypoxia at birth where the brain, lungs, and heart are all damaged and the child may be having continual convulsions.
Critics argue that these decisions are not based exclusively on physical suffering but on other criteria as well, such as quality of life, future ability to communicate, and the chance of the child leading an independent life. Verhagen argues that all doctors already make such decisions. "We are not working in intensive care for the sake of intensive care but to be able to offer the child a better future. We are continually making decisions about a child's prospects."I find these closing paragraphs aggressively creepy. The idea that doctors are continually making decisions about their charges and that these decisions are not made on clear, unambiguous scientific determinations but rather on fuzzy concepts like "predicted lack of self sufficiency" is frightening. Without clear guidelines (and I'm not sure the ambiguous and broadly written guidelines of the Groningen Protocol apply) these decisions are to be made at the level of the physician, giving these Dutch pediatricans the unenviable responsibility of deciding whether a child deserves life or death. Responsibility, I dare say, that has been arrogated from God.
By raising these issues Verhagen believes he can encourage Dutch paediatricians to report their actions, as making the decision to end a life is "the most important decision a paediatric team will ever make." He believes that by not prosecuting doctors Dutch society has already accepted deliberate killing as an option, but "the politicians are leaving the doctors to struggle on."
A few things are clear.
1. Disabled infants are often euthanized and these decisions are rarely reported. This is not, according to this AP report, limited to the Netherlands where the kill rate is estimated to be five times higher than reported.
In France, 73 percent of doctors in one study reported using drugs to end a newborn's life, but those cases aren't reported to authorities. Meanwhile, 43 percent of Dutch doctors surveyed and between 2 percent and 4 percent of doctors in the United Kingdom, Italy, Spain, Germany and Sweden reported doing so.It seems that the debate, then, is over infants in category 3, infants that need to be deliberately killed, not infants that will die on their own without radical intervention or even with radical intervention.
In the United States, some doctors and ethicists - both supporters and opponents of euthanasia - say newborn euthanasia has happened occasionally for decades, although it is much more common, and accepted, to withhold or stop intensive treatment and let the baby die. Experts said the new Dutch report will generate discussion but won't change American public opinion or practices.
2. Fetal screening for a variety of diseases (Cystic Fibrosis, Tay-Sachs, Downs, etc.) are widely accepted as appropriate. This Lives piece in the New York Times follows one couple's discovery that their infant has Osteogenesis imperfecta type II. The mutation, in either the COL1A1 or COL1A2 genes, results in profound, fatal, defects in skeletal formation, with the long limb bones "severely shortened and bowed." Jonathan Tropper describes his response to the diagnosis:
We walked on rubber legs down the hall to Dr. Eddleman's office, where he emerged from behind his veil of jargon just long enough to impart that we hadn't done anything wrong. Osteogenesis imperfecta type II was his diagnosis, a freak mutation over which we had no control. I could see in Liz's expression that it would take some time for her to believe him.Tropper's grief is modulated by his unwillingness to see the deformed "Baby Boy Tropper" as fully human. An accident, yes, a terrible mutation, germline mosaic, preventing the appropriate patterning of the skeleton, forcing the developing life to fall too short of normality, of the (miraculous) we expect. I feel moments like this, not the severe embryonic lethal mutations that force early miscarriages, really can call into question what is human. Should the Troppers have insisted on naming their son? Should they have insisted on burying him? Should they not have given him up for tests, consigning him forever to be personless, just another data point in a paper to be published in Fetal Abnormalities Research or another obscure journal read by the depraved obstetrician?
The fetus might make it to term or die in the womb. Either way, it wouldn't survive for long after birth. This disease, the doctor said, is ''fatal in infants.'' You know you've arrived in a different universe when the word ''fatal'' comes as a relief. Because until that moment, I had been trying to extrapolate what the flesh-and-blood version of this baby would look like in the maple crib we'd ordered, asking myself if we had it in us to raise such a severely compromised baby. Liz would later tell me that she was also sadly relieved. ''Fatal'' was our absolution -- we would not have to learn darker truths about ourselves.
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Nothing can prepare a woman for 18 hours of labor to deliver something she knows will be dead on arrival. Inducing labor at 20 weeks takes longer than at full term. When it came time to push, they gave Liz a Valium-Demerol drip. She would remember nothing. No one offered me a drip, so I still remember what came out of her that day. We didn't want to know the sex -- we hadn't all along -- but there it was on a form: Baby Boy Tropper. I'd always thought it might be.
It felt strange, returning home the next day. We didn't know how to mourn, how to categorize what we'd lost. Certainly, it had been a traumatic event, but had we lost a baby or a pregnancy? It felt different on an hourly basis. When we were sad, we wept. When we were O.K., we felt inexplicably guilty. But as those first, long days wore on, we slowly began to treat it more like a late miscarriage and not a lost baby; a painful setback, but not quite a tragedy. Still, we couldn't help feeling we were somehow shortchanging our fetus-baby a measure of grief in the name of our own emotional well-being.
Would they feel differently had they aborted, as couples routinely do for Tay-Sachs or other serious malfunctions? Does it matter that Baby Boy Tropper was born, even if he was already dead?
Should humanity be defined not by the vast majority of us that have 10 fingers and toes and organs in the right place but by the margin calls, the babies in the tail who do not? Are they cautionary, reminding us of how fortunate we are to have developed appopriately or informative, reminding us of how mysterious life (and genetics) can be?
3. Peter Singer has a unique viewpoint on the issue. For Singer membership in humanity is not conferred by birth but by intellectual development and self-awareness. The prospective person must be aware that "he or she is the same being who exists now, who existed in the past, and who will exist in the future." Failing to meet this standard makes you less than human, more like a mouse. In fact, Singer poses the question of whether it would be better to save a human or a mouse from a burning building (I love Singer's perversion of this question, usually asked to differentiate between human lives):
Yes, in almost all cases I would save the human being. But not because the human being is human, that is, a member of the species Homo sapiens.There's the acid, at the end. Humans who are no longer human (incapable, in Singer's rubric of defining themselves as beings in time, don't count anymore. They are no more special than a fieldmouse. Singer's blatant disregard for life on the margin (infants, disabled, the elderly, anyone injured in a car accident) is monstrously consistent:
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But when it comes to a question of taking life, or allowing life to end, it matters whether a being is the kind of being who can see that he or she actually has a life -- that is, can see that he or she is the same being who exists now, who existed in the past, and who will exist in the future. Such a being has more to lose than a being incapable of understand this.
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That?s why, in general, it would be right to save the human, and not the mouse, from the burning building, if one could not save both. But this depends on the qualities and characteristics that the human being has. If, for example, the human being had suffered brain damage so severe as to be in an irreversible state of unconsciousness, then it might not be better to save the human. (my emphasis)
Q. You have been quoted as saying: "Killing a defective infant is not morally equivalent to killing a person. Sometimes it is not wrong at all." Is that quote accurate?Don't let Singer onto a maternity ward! That being said, there is something to be said for Singer's insistence that self-awareness and knowledge of existence in time should be prerequisites for personhood. Singer is at least as comfortable with post-natal abortions as he is with late-state pre-natal ones. Many others are not. In this sense, Singer is more honest than a lot of critics, asserting that viable fetuses and freshly born babies should both be seen as disposable. Now, this might strike everyone as a terrible formulation, a coarsening of human existence, and a slippery slope to euthanizing the disabled, the elderly, and the brain-damaged. Singer does little to disabuse us of this notion. Even so, this more stringent definition of humanity might allow us to more easily consider the validity pseudo-human-pseudo-teratomas that might be created for the harvesting of stem cells.
A. It is accurate, but can be misleading if read without an understanding of what I mean by the term ?person? (which is discussed in Practical Ethics, from which that quotation is taken). I use the term "person" to refer to a being who is capable of anticipating the future, of having wants and desires for the future. As I have said in answer to the previous question, I think that it is generally a greater wrong to kill such a being than it is to kill a being that has no sense of existing over time. Newborn human babies have no sense of their own existence over time. So killing a newborn baby is never equivalent to killing a person, that is, a being who wants to go on living. (my emphasis)
So what do I think? Well, I report, you decide. I realize that's a cop-out. I'm going to say a couple things, in no particular order, and I'll just leave it at that.
First, I think the distinction between pre-natal screening and abortion and post-natal screening and euthanasia is perhaps a subtle one. That being said, there's a lot more popular revulsion at the idea of Doctors making decisions about whether a child lives or dies and gassing them with CO. Aborting a fetus with known (and profound) abnormalities seems more acceptable. (Additionally, Ashenazi Jews have carried out the world's most sucessful screening program to eradicate Tay-Sachs in their population. Is genetic testing and pre-selecting healthy embryos wrong?)
Second, I think that there's a difference between euthanizing the disabled and preventing the disabled. This is probably the largest point, but if there's a safe and reliable way to insure healthy offspring do not parents have an obligation to pursue it? However, once a disabled child (or a normal person becomes disabled) society has a duty to preserve the life and functionality of that person. People, unlike horses, aren't shot when they break their leg. If people were being born unable to walk because their mothers were drinking apple cider during pregnancy, it would be advantageous to prevent pregnant women from drinking apple cider.
Finally, the troublesome bit of the Groningen Protocol is about the Category 3 infants. Category 1 and 2 infants are beyond current medical care: they should be cared for appropriately but have no chance at life. I further support Groningen's belief that hazardous and costly surgery that will not produce palliation or amelioration of the condition should be avoided. The problem I have with Groningen is suggesting that many conditions which can be lived productively should be euthanized anyway. Many of the infants that Groningen recommends should be euthanized suffer from spina bifida. The New York Times interviewed one man with spina bifida:
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."
That, in a nutshell, is what is wrong with Groningen. Sorocco has lived a rich life, with a wife and children. He's a president of a foundation. He's a lawyer. I dare say that his local community, the community of spina bifida sufferers, and, on balance, the world would be a poorer place had he been euthanized after birth by a (perhaps) over-zealous doctor concerned about his "predicted lack of self sufficiency" or his "long life expectancy." I'm by no means a pro-life activist, but I don't want to support a world in which potentially productive citizens are snuffed out, as a matter of course, because medical professionals have decided that their lives aren't worth living. I'm sorry, but that's a perversion of the principles of medicine and an arrogant abrogation of decisions that have no right to be made by anyone, even committees of MDs.
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