The Malta Independent 20 May 2024, Monday
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A Matter of life and death

Malta Independent Sunday, 10 December 2006, 00:00 Last update: about 11 years ago

In Britain, a furore has been ignited by the Royal College of Obstetrics and Gynaecology, which has suggested that babies who are born severely premature should be allowed to die or killed. Being allowed to die is not the same as killing, but more of that later. The report, signed by the college’s head of ethics, Dr Susan Bewley, asks for the consideration of active euthanasia, non-resuscitation, and withdrawal of treatment for babies born at 25 weeks and under. The full pregnancy term is 40 weeks.

The Royal College of Obstetrics and Gynaecology has intimated that there is growing support for these views among paediatricians and those involved in the medical care of newborn babies. The college is to debate a motion that it is unethical to provide intensive care on a routine basis to babies born at 25 weeks and under. Each year, 800 such babies are born in Britain, putting such pressure on neonatal care units that healthier babies with a better chance of survival are being neglected in their favour. Our own Karin Grech Hospital has some experience of this problem with the increasing number of babies born through IVF, which frequently results in multiple births and babies born before term, putting the Special Care Baby Unit under great strain. The statistics are these: 39 per cent of babies born at 24 weeks survive; 17 per cent of those born at 23 weeks survive; most of them have significant disabilities that render them dependent on others for the rest of their lives.

The debate in Britain is conditioned by wide acceptance of the abortion of foetuses with physical problems, and the two issues are becoming enmeshed. The views of the medical professionals who favour the “kill them or let them die” approach have been put forward singly by the RCOG. Perhaps understandably, because they risk being labelled “baby-killers”, no doctors have been quoted in the British press as saying that they believe severely premature babies should be allowed to die. The only exceptions have been the doctor who signed the report, Dr Susan Bewley, and the president of the RCOG, Professor Sir Alan Craft, who emphasised the fact that “there is a lifetime cost” for these babies.

Those who are against the proposal have been more willing to speak to the newspapers. John Wyatt, consultant neonatologist at University College London, said: “Intentional killing is not part of medical care... once you introduce the possibility of intentional killing into medical practice, you change the fundamental nature of medicine.”

The debate follows closely on the news that Charlotte Wyatt, who was born three months premature and with severe brain and lung damage, has been abandoned by her parents at the age of three. These are the same parents who made headlines at her birth when they battled doctors in the courts to secure treatment for her. The doctors had advised them against, saying that Charlotte should be allowed to die with dignity as survival would mean a short life of great pain. The hospital imposed a “do not resuscitate” order against the parents’ wishes and they successfully sued to have it lifted. Charlotte has never left the hospital since. For the first two-and-a-half years of her life, she was seriously unwell and linked up to machines. Then, when the doctors told her parents that they could take her home and care for her there, they announced that they wouldn’t be taking her after all, because they were separating. One parent can’t look after her alone because she needs round-the-clock attention, and they are refusing to cooperate in living together so as to look after her, even though the only reason she is alive in the first place is because they fought the doctors to give her treatment. They have made her somebody else’s problem. Having screamed and shouted about their parental rights when she was born, they think nothing now of washing their hands of their parental duties.

Charlotte celebrated the third birthday no one thought she would see in the children’s ward of St Mary’s Hospital in Portsmouth, with a party thrown by the nurses. Outside hospital, she has nowhere to go. There is no children’s home that can cope with her medical care. She will stay in the hospital, mothered by nurses, while social workers search, probably in vain, for a couple who are willing to foster her. In Malta, she would have been sent to Dar il-Providenza, which was set up in the 1960s for this very purpose: the care of severely disabled babies and children whose parents reject them, or who are simply unable to look after them.

* * *

The tragic case of Charlotte Wyatt appears to give weight to the RCOG’s proposals. Caring for her has been hugely expensive and demanding, drawing resources away from other babies. She needs 24-hour attention, will never be independent, will not live for much longer, and her parents, after fighting the doctors for her survival, have decided that they don’t want her after all because she’s too much trouble. So the doctors were right: she should have been allowed to die. Or were they?

This moral dilemma is clarified somewhat by the expedient of not creating a separate class of people called “babies”. Babies are people. The principles that apply in the medical care of adults apply also to babies. Without two discrete categories of humanity – one called “babies” and the other called “people” – there is less moral confusion.

Alan Craft’s insistence on the financial burden and “lifetime cost” of such babies is, considered in this context, a complete non sequitur. The expense incurred in looking after people can never be cited as justification for killing them to relieve one’s burden. We can no more argue for the killing of a crippled baby on the grounds that looking after it costs a great deal, than we can for the killing of an old woman who costs a fortune in pensions, medical treatment and residential care. If we may not kill expensive old people then we may not kill expensive babies either.

It follows that if we may not kill off chronically ill adults who require long periods of hospitalisation, on the grounds that they are “bed-blockers” who divert scarce resources away from others, then we may not kill premature babies on these grounds either. Also, if abandonment by parents and the inability of parents to cope are not grounds for the killing of healthy babies born at full term, or older children for that matter, then they cannot be grounds for the killing of premature babies who are seriously ill. Children’s homes all over the world are full of babies who have been abandoned by their parents. Nobody is suggesting that they should have been killed at birth, or that they should be machine-gunned now. Equally, we do not kill burdensome old parents or bed-ridden spouses, even when they need 24-hour care.

* * *

The three alternatives put forward by the RCOG should be considered in this light, too: that babies – even severely crippled premature babies – are people. Doing so immediately rules out active euthanasia. The principle in which the legal ban on euthanasia is rooted applies equally to babies born before term. The thinking that euthanasia is wrong is not qualified by age nor derived from it. The other two alternatives proposed by the RCOG – non-resuscitation and withdrawal of treatment – are not ruled out by classifying babies as people. They are not illegal and are used on a routine basis in the medical care of adults. Machines are switched off and treatment is withdrawn by doctors in consultation with the patient’s next of kin, if the patient is not in a position to take this decision. The headline-making American case, in which a woman who had been brain-dead for 10 years had her life support machine switched off after a horrible battle between her husband and her parents, may have led us to think that this kind of thing is exceptional – and exceptionally wrong. Yet it is neither.

Patients who are in full possession of their faculties sometimes give instructions for the withdrawal of their treatment. Some of them reject the suggestion of any form of treatment. Many people with cancer refuse to undergo chemotherapy.

Jehovah’s Witnesses don’t accept medical intervention. It’s their choice and their business, and it’s up to them to decide. Others leave instructions – called “living wills” – which stipulate that they are not to be resuscitated or hooked up to life support machines, should they collapse.

If non-resuscitation and withdrawal of treatment are legal and acceptable for adults, then they are also legal and acceptable for babies, and the proposal by the RCOG is not as shocking as it seems at first. A letter published in one of the better London newspapers made the important point that if allowing very premature babies to die is “social engineering”, then so is bringing on the heavy medical artillery to help them survive. I would go further than that and say that allowing such babies to die is not social engineering but allowing nature to take its cruel course, while bringing in advanced medical technology to force survival is social engineering of the first order.

* * *

Here lies the rub: premature babies cannot decide for themselves. They are not in a position to issue instructions or make living wills, and their next of kin is inevitably an emotionally fraught woman who has just given birth in circumstances even more traumatic than they ordinarily are. The next of kin is in no position to make a rational decision about resuscitation or withdrawal of treatment, because she is hardwired for the protection and survival of the baby, no matter how desperately premature and how undeveloped its brain and lungs. That is why doctors, as in the case of Charlotte Wyatt, are over-ruling parents and taking the decision themselves. That parents have the right to decide such things is already a moot point. Parents do not have rights of ownership over their children; they only have the duty of care. They certainly have no right to decide whether their children live or die. In the case of the conjoined twins from Gozo, which made world headlines, the highest court in England – where they were born - ruled clearly and unequivocally that the decision as to whether one child should be saved, rather than allowing both to die, was not the parents’ to take. The parents wanted both babies to be allowed to die, arguing that the operation would kill one of them even if it saved the other, and this was ‘against their religion’. The doctors thought this utterly disgraceful, and fought the parents all the way in court, winning the battle. That little girl is alive today only because her parents were over-ruled.

* * *

There is another point to be made here. Whatever is suggested for premature babies must follow on for other babies. Any debate on whether to kill, resuscitate or withdraw treatment from very premature babies who will be crippled and dependent must be extended to babies who are born full term but with severe disabilities. You can’t discriminate between babies on grounds of whether they were full term or not. This is where the argument for lack of treatment – intentional killing is already ruled out by the law – becomes complicated. How severe does a disability have to be to allow for the withdrawal of treatment or non-resuscitation? A sliding scale of disability, sorting out those who should be left to die from those who should be allowed to survive, is ugly and repulsive in its cold-hearted pragmatism. We cannot decide that a baby with Down’s Syndrome should be allowed to live, but a baby with cerebral palsy or the lung disease of a severely premature infant should be allowed to die. The moral ramifications would be enormous.

All considered, it appears that the existing situation is the safest one, even if it is also the most expensive: giving care to all babies, no matter how badly off they are or how premature. Deciding who will live and who will die creates unsafe situations. And yet, and yet – I can’t help feeling that subjecting really ill babies to painful intervention, so that they will live for a brief and unpleasant few years, is neither moral nor correct, but a modern form of cruelty. In medieval times, it would have been called torture.

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