Nicky Chapman was born in 1961 with a rare condition called brittle bone disease. During her birth alone she suffered 50 fractures. Doctors told her parents that she would be blind, deaf and unable to communicateand with severely diminished mental functions.
The doctors believed that her 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.
Under a recently proposed guideline in Holland, 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. Known as the Groningen protocol, it was published by Drs. Eduard Verhagen and Pieter Sauer in the New England Journal of Medicine. If this were in place back in 1961, Nicky would probably not have survived.
Luckily, her parents did not take the doctors’ advice and brought Nicky 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, in October last year.
The Groningen protocol seeks 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).
The Netherlands boasts the most permissive laws on euthanasia in the world. Voluntary euthanasia was legalized in 2001, with the condition that the patient “suffers hopelessly and unbearably” without reasonable prospect of resolution. Those between the ages of 12 and16 must obtain parental approval.
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.
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.
Allowing this practice to continue can set a very dangerous precedent where infanticide may become legalized. As the abortion debate has shown, proponents of abortion have first lobbied this for “hard cases” such as rape or anencephaly. Once the extreme was permitted, it did not take long before abortion became legal on demand.
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.
It is not so surprising when one hears academics such as Peter Singer, Chair of Ethics at Princeton, advocating infanticide. In his book Should the Baby Live, Singer suggests that “a period of 28 days after birth might be allowed before an infant is accepted as having the same right to life as others … and would allow a couple to decide that it is better not to continue with a life that has begun very badly.”
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 protocol were approved, 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.
In their effort to gather support for this protocol, advocates are repeating the same argument used to make euthanasia legal.
Verhagen argued that newborns with severe malformations are already being killed each year in Holland without being prosecuted. He feels that it is wrong to keep it in secret: “In the Netherlands we want to expose everything.”
In stating that mercy killing is common practice among doctors and that legalization would bring this hidden practice out into the public for better control, this strategy worked to legalize euthanasia in 2001. However, a study by the British Medical Journal estimates that despite the new law, about half the physicians in Holland continue to conduct euthanasia in secret.
Many also worry that after children, who will be next?
There is a very real danger that accepting the Groningen protocol could lead to approval of involuntary euthanasia. Though this practice is still illegal in Holland, studies conducted by the Dutch government reveal that since 2001, many patients are put to death without their express consent. In fact, cases of killing without consent presently outnumber those conducted with consent.
In a recent court case in Holland, a doctor injected fatal drugs into an elderly woman after she told him she didn’t want to die. He was acquitted.
Such legally sanctioned abuses have created a climate of fear among elderly persons and hospital residents. They wear arm bracelets telling doctors not to end their lives prematurely, or they relocate to nursing homes across the border in Germany where euthanasia is still illegal.
The Groningen protocol is problematic because it is based on somebody else’s assessment of a child’s quality of life.
Bishop Elio Sgreccia, president of the Pontifical Academy for Life, criticized this guideline, since “the child or newborn infant is not capable of evaluating or defining his suffering as unbearable; the person who assesses it is the doctor, and those who consent and decide are relatives. Incidentally, is not this an issue of their own suffering?”
“Quality of Life and Ethics of Health” was precisely the theme of the annual meeting of the academy last month. On this occasion, John Paul II recalled that very often “the so-called quality of life is interpreted primarily or exclusively as economic efficiency, inordinate consumerism, physical beauty and pleasure.” (Evangelium Vitae N. 23). The Pope emphasized that every person has inherent dignity that “should be recognized and respected in any condition of health, infirmity or disability.”
Nicky — or rather —Lady Chapman would agree with this assessment. Employing her newfound status, Baroness Chapman of Reeds is actively working 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 think of that doctor’s 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.
Legionary Father Joseph Tham
is a medical doctor and teaches at the school of bioethics at the Regina
Apostolorum University in Rome.