"The college’s submission was also welcomed by John Harris, a member of the government’s Human Genetics Commission and professor of bioethics at Manchester University. “We can terminate for serious foetal abnormality up to term but cannot kill a newborn. What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?” he said."

http://www.timesonline.co.uk/article/0,,2087-2437921,00.html

Doctors: let us kill disabled babies
Sarah-Kate Templeton, Health Correspondent
The Sunday Times, November 05, 2006

ONE of Britain’s royal medical colleges is calling on the health profession to consider permitting the euthanasia of seriously disabled newborn babies.

The proposal by the Royal College of Obstetricians and Gynaecology is a reaction to the number of such children surviving because of medical advances. The college is arguing that “active euthanasia” should be considered for the overall good of families, to spare parents the emotional burden and financial hardship of bringing up the sickest babies.

“A very disabled child can mean a disabled family,” it says. “If life-shortening and deliberate interventions to kill infants were available, they might have an impact on obstetric decision-making, even preventing some late abortions, as some parents would be more confident about continuing a pregnancy and taking a risk on outcome.”

Geneticists and medical ethicists supported the proposal — as did the mother of a severely disabled child — but a prominent children’s doctor described it as “social engineering”.

The college called for “active euthanasia” of newborns to be considered as part of an inquiry into the ethical issues raised by the policy of prolonging life in newborn babies. The inquiry is being carried out by the Nuffield Council on Bioethics.

The college’s submission to the inquiry states: “We would like the working party to think more radically about non-resuscitation, withdrawal of treatment decisions, the best interests test and active euthanasia as they are ways of widening the management options available to the sickest of newborns.”

Initially, the inquiry did not address euthanasia of newborns as this is illegal in Britain. The college has succeeded in having it considered. Although it says it is not formally calling for active euthanasia to be introduced, it wants the mercy killing of newborn babies to be debated by society.

The report does not spell out which conditions might justify euthanasia, but in the Netherlands mercy killing is permitted for a range of incurable conditions, including severe spina bifida and the painful skin condition called epidermolysis bullosa.

Dr Pieter Sauer, co-author of the Groningen Protocol, the Dutch national guidelines on euthanasia of newborns, claims British paediatricians perform mercy killings, and says the practice should be open.

Sauer, head of the department of paediatrics at the University Medical Centre Groningen, said: “In England they have exactly the same type of patients as we have here. English neonatologists gave me the indication that this is happening.”

Although euthanasia for severely handicapped newborn babies would prove contentious, some British doctors and ethicists are now in favour. Joy Delhanty, professor of human genetics at University College London, said: “I would support these views. I think it is morally wrong to strive to keep alive babies that are then going to suffer many months or years of very ill health.”

Dr Richard Nicholson, editor of the Bulletin of Medical Ethics, who has admitted hastening the death of two severely handicapped newborn babies when he was a junior doctor in the 1970s, said: “I wouldn’t argue against this.” He spoke of the “pain, distress and discomfort” of severely handicapped babies.

The college’s submission was also welcomed by John Harris, a member of the government’s Human Genetics Commission and professor of bioethics at Manchester University. “We can terminate for serious foetal abnormality up to term but cannot kill a newborn. What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?” he said.

Edna Kennedy of Newcastle upon Tyne, whose son suffered epidermolysis bullosa, said: “In extremely controlled circumstances, where the baby is really suffering, it should be an option for the mother.”

However, John Wyatt, consultant neonatologist at University College London hospital, said: “Intentional killing is not part of medical care.” He added: “The majority of doctors and health professionals believe that once you introduce the possibility of intentional killing into medical practice you change the fundamental nature of medicine. It immediately becomes a subjective decision as to whose life is worthwhile.”

If a doctor can decide whether a life is worth living, “it changes medicine into a form of social engineering where the aim is to maximise the benefit for society and minimise those who are perceived as worthless”.

Simone Aspis of the British Council of Disabled People said: “If we introduced euthanasia for certain conditions it would tell adults with those conditions that they were worth less than other members of society.”

Haunted mother who backs mercy killing
Sarah-Kate Templeton and Steven Swinford
The Sunday Times, Nov. 5, 2006

JONNY KENNEDY lived and died in agony. From the moment he was born until his premature death at the age of 36 he was covered with blisters and sores, the result of a rare genetic skin condition called epidermolysis bullosa (EB). The mildest touch caused his skin to bleed and sheer off.

When he died of skin cancer on September 26, 2003, his mother Edna, who lives in Newcastle upon Tyne, admitted that her primary reaction to his death was relief, not grief.

In the Netherlands doctors are permitted to carry out mercy killings of babies born with disabilities including severe forms of EB and spina bifida. Now a professional medical body in Britain says that society should consider “active euthanasia” here for the sickest babies.

Kennedy says she is instinctively opposed to euthanasia but after almost four decades of caring for Jonny, she believes it should be an option in some circumstances.

“Jonny actually contemplated suicide at the age of 18, unbeknown to me. But, as a mother, it was much more difficult. I remember the doctor said, ‘Just leave him at the hospital, forget about him’. But I couldn’t have done that — it wouldn’t have been in my nature. He was my responsibility. I had to deal with him,” Kennedy said.

“I never thought about euthanasia, but it did cross my husband’s mind. He offered when Jonny was little to put a pillow to his head and end the suffering. I couldn’t condone it.

“But knowing what I know now, I couldn’t in all conscience bring a child into the world who was going to suffer like that. In extremely controlled circumstances, where the baby is really suffering, it should be an option for the mother.”

Five years ago Dr Pieter Sauer, now head of paediatrics at the University Medical Centre Groningen in the Netherlands, agreed to the mercy killing of a baby boy born at the hospital with EB. The infant was in constant pain but, because his skin was so tender, his parents could not touch or lift him to offer comfort because even the most gentle contact increased the agony. They could only watch helplessly as their baby, covered from head to toe in layers of bandages, suffered. They appealed to Sauer for help and the child died at three months old.

Sauer insists the killing offered relief to the infant, his parents and hospital staff. “The parents came to me and said, ‘Please help us because this is suffering without any purpose. In no way is this in the interests of this child’,” he said.

Every day in hospitals across Britain doctors and parents are faced with fraught decisions about how far they should go to keep alive severely disabled babies. At the moment medics can offer high-tech intensive care or, if everyone agrees that it is pointless to give the infant invasive treatment that would be unlikely to succeed, the baby is fed and kept warm but allowed to pass away in their own time.

While raising the issue of euthanasia of newborns, the Royal College of Obstetricians and Gynaecologists has stopped short of specifying the level of disability which would justify it.

However, the case of Charlotte Wyatt, the severely handicapped infant whose parents fought a series of lengthy court battles to stop doctors letting her die, crystallises many of the dilemmas.

Portsmouth Hospitals NHS Trust, which runs St Mary’s hospital where Charlotte is a patient, won a High Court ruling, against her parents’ wishes, to allow doctors not to resuscitate her. Doctors told the court that ventilating Charlotte, who was born at 26 weeks, would be “purposeless and intolerable to her”. They also said that Charlotte was in constant pain and would be unable to have any quality of life (although an independent medical report later disputed this), and that she was unlikely to make it through the winter of 2004.

Charlotte has defied the predictions and, at the age of three, is well enough to leave hospital. However, the burden of caring for her played a part in the break-up of her parents’ marriage and she will not be able to leave hospital until a foster family is found for her.

Advanced medical treatment means that babies born after only 23 weeks can be saved but doctors point out that many live with severe disabilities, creating a lifelong burden for their parents and considerable costs to the taxpayer. A study, EPICure, led by researchers at Nottingham University, found that by the age of six, only 20% had no disabilities.

The cost of treating very premature babies is high. A neonatal intensive care bed costs about £1,000 a day and extremely premature babies can require intensive care for four months.