“Doctors said they could do no more and sent me home to die – I’m still waiting.”– Nicky Chapman
Suppose you delivered a baby with osteogenesis imperfecta, a rare condition with defect in collagen formation that makes the bones brittle and easy to fracture. In this case, the condition commonly known as brittle bone disease was so severe that at birth alone the infant suffered 50 fractures. The prognosis was very poor, and the baby would probably grow up blind, deaf and unable to communicate and with severely diminished mental functions. What would you recommend the parents to do?
This was what happened in England in 1961, the doctors believed that the newborn child Nicky Chapman’s quality of life would be so poor that her life would not be worth living. They suggested that she be put into a home and sent away to die.
Did they give the correct advice? Some people today would even suggest that it would be much more compassionate to end the life of neonates born like this so that they would not suffer, or that their parents would not be burdened, or that the society cannot afford the expenses of caring for these children.
Infanticide is not a new idea. Ancient Greeks and Romans were documented to practice it. Plato recommended in the Republic to kill babies born with imperfections or certain diseases so as not to burden the state. The Judeo-Christian tradition, however, viewed every human person as valuable and prohibited its practice.
In recent years, when therapeutic abortion became widely accepted in many developed countries, the illegitimacy of infanticide is now put into question again.
Among the most famous proponents of infanticide is the Australian born bioethicist Peter Singer, Chair of Ethics at Princeton. He defines a “person” as someone identified by active “rational attributes” and “sentience.” Abortion is allowed since “fetuses have not preferences before they can feel pain.”
Similarly, the newborn cannot be a person: “Now it must be admitted that these arguments apply to the newborn baby as much as to the fetus. A week-old baby is not a rational and self-conscious being; and there are many nonhuman animals whose rationality, self-consciousness, awareness, capacity to feel, and so on, exceed that of a human baby a week, a month, or even a year old.” (Practical Ethics, 1993). Thus, he reaches the shocking conclusion that infanticide should sometimes be allowed.
While Singer has contemplated this in the case of severely disabled infants whose life would cause suffering both to themselves and to their parents, and in the past suggested twenty-eight days after birth as the cut-off, he now finds this limit as “impracticably precise” and when push comes to shove, concedes that, “A three-year-old is a gray case.”
The Dutch protocol on infanticide
While this may seem shocking at first, infanticide is already practiced in some parts of the world. In the Netherlands, for instance, voluntary euthanasia was legalized in 2001.
In 2005, two Dutch physicians justified their behaviors in the New England Journal of Medicine “The Groningen Protocol for Euthanasia in Newborns.” Under this proposal, if doctors at the hospital think that a child suffers unbearably from a terminal condition, they have the authority to end the child’s life. These authors believed that life-ending measures can be acceptable in cases when the child’s medical team and independent doctors agree the pain cannot be eased and there is no prospect for improvement, and when the parents consent to it.
The Groningen protocol sought to create the legal framework to actively end the lives of newborns suffering from incurable diseases or extreme deformities. Conditions cited in the paper are very premature births and severe cases of spina bifida and epidermosis bullosa (a rare blister-forming skin disease). These are not only newborns with no chance of survival who are left to die, but euthanasia was extended to “infants who may survive after a period of intensive treatment, but expectations regarding their future condition are very grim” and “babies with an extremely poor prognosis who do not depend on technology for physiologic stability and whose suffering is severe, sustained, and cannot be alleviated.”
It is alarming that four such killings have already taken place at the Groningen hospital, where lethal doses of sedatives were pumped into terminally ill babies. Although these cases were reported to government authorities, no legal charges have been pressed against the hospital or the doctors.
For those who are familiar with academic bioethics, this is not surprising. In fact, many prominent bioethicists, echo Singer’s utilitarian approach to ethics and his reclassification of person/non-person, which would justify infanticide.
Presently, the idea of extending the abortion rationale to infanticide is however gaining popularity. A year ago, columnist and writer Virginia Ironside, speaking on a BBC religious affairs programme, affirmed, “If a baby’s going to be born severely disabled or totally unwanted, surely an abortion is the act of a loving mother.’ She added: ‘If I were the mother of a suffering child—I mean a deeply suffering child—I would be the first to want to put a pillow over its face…” (See video clip of interview).
Ethical concerns with infanticide
Many people are uncomfortable with actively killing infants, even though they are gravely sick or disabled. Yet according to the utilitarian ethics of Singer and Ironside, voluntary euthanasia should be allowed when the autonomous person consents to end his live which he considers intolerable. Not surprisingly, Singer also permits non-voluntary euthanasia of “non-persons”, namely, those who never have capacities to reason and to choose (i.e., infants) or those who have lost them due to senility, disease or incapacitation.
The interests of “non-persons” are superseded by the preferences of “persons” whose greater interests are served by their death. Thus, according to their logic, non-voluntary euthanasia is at times permitted for “unwanted” newborns, the mentally ill, mentally retarded, senile patients, the comatose, and all other disabled human beings who could not decide for themselves.
Another problem with approving measures such as that proposed in Holland is that it might lead to further erosion of care for the neonates. Since euthanasia became legal in Holland, there has been a decline of palliative medicine, where the sick and dying are kept comfortable at the last stages of their lives. If the Groningen protocol became a standard of medical practice, a similar impact might occur in neonatology, where premature babies might not be revived, even though medical advancements are continuously increasing their chances of survival. Allowing this practice to continue can set a very dangerous precedent where infanticide may become legalized. On this ethical slippery slope, if infants could be killed for their supposedly low quality of life, one could eventually justify killing for less severe conditions. As Dutch bioethicist Henk Jochemsen wrote, “Hard cases make bad laws. As soon as a law is passed, it will expand the number of those who are considered extreme cases.”
Along with infanticide, this protocol would also pave the way for eugenic practices. As prenatal diagnosis becomes routine, when some genetic disease or congenital deformity is discovered, more often than not abortion is the option. This Dutch protocol can become an extension of the eugenic practice of killing deformed newborns not previously detected in utero.
The Groningen protocol is problematic because it is based on somebody else’s assessment of a child’s quality of life. Since the newborn infant cannot evaluate or define his or her suffering as unbearable, it is usually the physician who makes this assessment and the parents and relatives who give the consent to infanticide. The problem, we may ask, “Is this not more an issue of the suffering of the adults rather than the newborn in question?”
In his encyclical letter Evangelium Vitae, the late Pope John Paul II reminded us that very often “the so-called quality of life is interpreted primarily or exclusively as economic efficiency, inordinate consumerism, physical beauty and pleasure.” In contrast, it is important to stress that every person has inherent dignity that “should be recognized and respected in any condition of health, infirmity or disability.”
Getting back to the case of Nicky Chapman who was born with osteogenesis imperfecta, if the Groningen protocol were in place back in 1961, she would probably be left to die or actively euthanized. Luckily, her parents did not take the doctors’ advice and brought the baby home. Despite the 600 fractures in her life and a short stature of 2 feet 9 inches, she grew up, obtained education and work. In fact, Nicky Chapman managed to become the first person with a congenital disability to be appointed to the British House of Lords.
Nicky—or rather—Lady Chapman of Reeds actively works against legislation in the United Kingdom that could pave the way to euthanasia. As she adeptly maneuvers her electric wheelchair in the House of Lords, it is chilling to recall her doctors’ long-distant diagnosis that she had “no noticeable mental functions.” “That is a little bit different from what I have managed to achieve and where I am today,” she commented.
Author: Fr Joseph Tham, LC, MD, PhD. Assistant Professor of Bioethics, Regina Apostolorum University, Rome; Visiting Professor, Holy Spirit College Seminary, Hong Kong; Fellow, UNESCO Chair in Bioethics and Human Rights
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