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Some sick babies must be allowed to die, says Church

This article is more than 17 years old
· Bishop admits right to life for newborns is not absolute
· Nuffield inquiry to publish guidelines on premature births

Church of England leaders want doctors to be given the right to withhold treatment from seriously disabled newborn babies in exceptional circumstances. The move is expected to spark massive controversy.

The church leaders' call for some children to be allowed to die - overriding the presumption that life should be preserved at any cost - comes in response to an independent inquiry, which is to be published this week, into the ethics of resuscitating and treating extremely premature babies.

The decision by religious leaders to accept that in some rare cases it may be better to end life than to artificially prolong it is a landmark for the church. The Rt Rev Tom Butler, Bishop of Southwark and vice chair of public affairs of the

Mission and Public Affairs Council, states in the church's submission to the inquiry, that 'it may in some circumstances be right to choose to withhold or withdraw treatment, knowing it will possibly, probably, or even certainly result in death'.

The church's report does not spell out which medical conditions might justify a decision to allow babies to die but they are likely to be those agonising dilemmas such as the one faced by the parents of Charlotte Wyatt, who was born three months prematurely, weighing only 1lb and with severe brain and lung damage.

The report also suggests the enormous cost implications to the NHS of keeping very premature and sick babies alive with invasive medical care and the burden on the parents should also be taken into consideration.

Doctors wanted to switch off Charlotte's life support machine because they said her severe mental and physical handicaps left her in constant pain with an 'intolerable' quality of life. They pointed out that every time she had an infection, staff would have to give injections or set up drips that caused yet more pain.

After the case went through the courts, the child, now three, survived but with severe disabilities. She is now in care as her estranged parents found it too hard to meet her 24-hour healthcare needs.

The church's call comes in their submission to the Nuffield Council on Bioethics, an independent body that publishes guidelines on how doctors should deal with ethical issues. The council set up the inquiry nearly two years ago in order to consider the implications of advances which enable babies to be born halfway through pregnancy and kept alive.

Their statement comes the week after one of Britain's royal medical colleges called for a public discussion over whether to permit the euthanasia of the sickest babies. The proposal from Royal College of Obstetricians and Gynaecologists was welcomed by geneticists and medical ethicists, but described it as social engineering by others.

In its submission, the Church of England said that although it could not accept the argument that the life of any baby was not worth living, there are 'strong proportionate reasons' for 'overriding the presupposition that life should be maintained'. 'There may be occasions where, for a Christian, compassion will override the "rule" that life should inevitably be preserved,' wrote Butler. 'Disproportionate treatment for the sake of prolonging life is an example of this.'

The church states that it would support the withdrawal of treatment only if all reasonable alternatives had been fully considered 'so that the possibly lethal act would only be performed with manifest reluctance'.

But it accepted there were a range of reasons why the final decision to withdraw or refuse treatment should be made, including the question of cost. 'Great caution should be exercised in bringing questions of cost into the equation when considering what treatment might be provided,' wrote Butler. 'The principle of justice inevitably means that the potential cost of treatment itself, the longer term costs of healthcare and education and opportunity cost to the NHS in terms of saving other lives have to be considered.'

Very premature babies run a higher risk of brain damage and disability. If they are born at 22 weeks, 98 per cent of them die, though by 26 weeks the chances of survival has risen to 80 per cent. Different counties have different policies for very tiny infants.

Babies born before 25 weeks are not given medical treatment in the Netherlands and in certain conditions, euthanasia is permitted.

When the Nuffield Council produces its long-awaited report on Thursday, it is expected to reject a Dutch-style limit, with hospitals required to let a baby below a certain age die, arguing that even two infants born at exactly the same age can vary widely. Instead, they are likely to call for much clearer guidelines to doctors about the issues of viability.

Parents of very premature infants will also be asked to start talking to doctors at a much earlier stage about the likely health outcome of their babies, so that they can be prepared for the worst.

The church's submission counsels parents against expecting too much from medics, and asks doctors to refrain from giving parents false hope. 'The principle of humility asks that members of the medical profession restrain themselves from claiming greater powers to heal than they can deliver,' it said.

'It asks that parents restrain themselves from demanding the impossible from the medical profession and indeed from themselves and their own capacity to cope.'

· Read Gaby Hinsliff's original article on the premature baby debate here

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