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Colum Kenny: Life or death - when parents don't get to choose for their child

His parents do not agree that their young son has to die. Using the internet, his father has found a doctor who will treat the boy for $30,000 on a Caribbean island.

The boy's dad has been clinging to hope that his severely brain-damaged son, aged six, might somehow yet have a life worth living.

Last week, the Irish High Court disagreed. Its president, Mr Justice Nicholas Kearns, ruled that SR (as he was identified in court) should not be resuscitated in the event of an acute deterioration requiring invasive treatment where medical advice dictates that not resuscitating SR is in the child's own best interests. SR can be left to die. His parents do not get to decide what is in his best interest.

When SR was almost two, he nearly drowned. He suffered prolonged cardiac arrest and extensive irreversible brain damage. He now lives in a children's home with special facilities.

The court heard that SR is cortically blind and has no voluntary movement of his limbs: "He requires carers to move him regularly while in bed to prevent bedsores. He is incontinent and has no method of communication, although he does cry out at times. He appears to feel pain, for example, when blood samples are taken."

On the other hand, SR also seems to be soothed by contact with his parents. It is an excruciating case and the judge said, "No words of mine would be adequate to describe the extent of the concern, love and support demonstrated at all times for SR by his parents. Their suffering can only be imagined."

So is it acceptable to let SR die? The case raises ethical issues about the rights of the disabled and of parents, and about the efficacy and ethics of stem cell medical treatment.

Not every parent is as dedicated as are those of SR. In at least one English case, the unwillingness of parents to take care of their child has even been allowed by a court to count as a factor in its decision to let a child die.

In that 1981 case, the child was born with apparently uncomplicated Down Syndrome and the baby's parents did not want their child to live. The baby was prescribed medication to keep it sedated but did not receive nourishment or sustenance and so died three days after birth. The child, it seems, was effectively starved to death.

In that case, the English court took on board the opinion of the President of the Royal College of Physicians who stated that: "It is ethical to terminate life, providing other considerations are taken into account, such as the status and ability of the parents to cope in a way that the child could otherwise have had a happy life."

The fact that a sick child's life may partly depend on the ability or willingness of parents to look after it, and the fact that food may be withheld from a child to let it die are both disturbing factors that raise ethical questions similar to those that arise when late abortions are permitted in practice for the convenience of parents.

But the case in Dublin was different. Here SR's parents have been fighting to keep their son going, and it was the withholding of further resuscitation (not ongoing nourishment) that was at issue.

Judge Kearns said last week: "The court will, in exceptional circumstances, authorise steps not being taken to prolong life, but could never authorise a course of action which would accelerate death or terminate life."

SR's father believes that SR could benefit from foetal or embryonic stem cell transplantation. The father found through the internet a doctor in the US who provides this treatment. The treatment is illegal in the US and in Ireland, but the doctor uses a private clinic in the Dominican Republic and Mexico for $30,000 per treatment.

However, six-year-old SR is so ill that he cannot travel by plane. His father would bring him by boat to South America, with stop-offs in hospitals along the way. But doctors on this side of the Atlantic say that SR is not fit for long distance travel due to the high risk of negative medical consequences that could prove life-threatening.

A doctor here has also advised that there is no evidence that stem cell treatment confers any benefit for children with neurological impairment and it would not generally be recommended treatment.

During 2008, the Irish Council for Bioethics noted in an opinion that: "Foetal stem cell transplantation has also been used in patients suffering from Huntington's disease. The extent of clinical benefit is, however, unclear. One trial documented cognitive and motor improvements, whereas in another trial no effect was seen."

The transplantation of human foetal stem cells to treat neurodegenerative disorders is also limited by the availability of embryonic tissue, and the process itself is regarded as unethical by the Catholic Church and others.

In 2009, the BBC reported that a boy treated with foetal stem cells for a rare genetic disease later developed benign tumours. This raised questions about the safety of the treatment. The boy had received stem cells in 2001 at a Moscow hospital.

Last week, the Irish High Court pointed out that it was the duty of the court to put the interests of the child first in every such case.

The judge found in SR's case, on medical advice, that further resuscitation would involve "undue pain and suffering and would merely constitute a prolongation of life for him with no prospect of improvement". He added that he could not conceive of any judge forcing a doctor to adopt a course of treatment that in the clinical judgement of the practitioner was not in the best interests of the patient.

Last week's case was an example of how to deal with an ethical problem of great complexity. It was addressed with calm and sensitivity, and the judge considered both the feelings of the parents and available scientific evidence. He tried as best as anyone could to decide what SR would choose if the child himself were in a position to make a sound judgement.

Sunday Independent