Voice of the Family

A LAY INITIATIVE FORMED TO DEFEND

CATHOLIC TEACHING ON THE FAMILY

A tale of two children: doctors, disability and the law

By Liam Gibson   |   22 March 2023

On Sunday 19 March 2023, a “citizens convention” in France concluded a discussion on end-of-life care by calling for the introduction of assisted suicide.1 Opponents of the proposal have already warned that legalisation will lead to the killing of people who have not asked to die — beginning with children.2 Such concerns are well-founded. In the Netherlands, “the jurisprudential ‘legality’ of euthanasia that was fought for by advocates of voluntary euthanasia on the basis of the principle of autonomy and self-determination of patients, actually has increased the paternalistic power of the medical profession above its last limit, above the law.”3 Placing such power in the hands of doctors not only corrupts the medical profession but the whole of society — a danger that can be illustrated by the stories of two children born in England over 40 years ago.

“Baby Alexandra” was born in London on 28 July 1981.4 As with many Down’s children, she was born with additional complications and it was soon discovered that she had an intestinal blockage. Fortunately, this condition, which is not uncommon, can be remedied by a straightforward surgical procedure. With the blockage removed, Alexandra would have a life expectancy of 20 or 30 years, but without treatment, she was likely to die within a matter of days. While the hospital wished to operate, Alexandra’s parents refused to provide consent. Instead, they felt that the life-threatening blockage was providential — they believed that “God or Nature had given the child a way out”.5 The hospital contacted the Hammersmith and Fulham local authority and social workers attempted to persuade the parents to reconsider their decision. When they remained convinced that it was in her best interests to die as a baby rather than face the future with Down’s syndrome, David Plank, the Director of Social Services succeeded in having Alexandra declared a ward of court and then gave the go-ahead for the operation. Alexandra was transferred to Great Ormond Street Hospital but surgeons there refused to act without parental consent. Plank then turned to the High Court for approval for the intervention but, on hearing from the parents, the judge returned her to their care. Plank, however, did not give up. That afternoon, he successfully brought an appeal and the baby was once again a ward of court. When a compliant surgeon was found, the procedure finally went ahead. Following the operation, Alexandra made steady progress and was subsequently fostered.  

Although Alexandra’s case, known as Re B (A Minor) was over quickly — lasting only a matter of days from beginning to end — it was a landmark in English law. In an unprecedented ruling, Lord Justice Templeman agreed that Alexandra could have a happy life and that it was not for parents to decide if their children lived or died. In a brief ruling of just three pages, he states: 

“…whether the life of this child is demonstrably going to be so awful that in effect the child must be condemned to die, or whether the life of this child is still so imponderable that it would be wrong for her to be condemned to die … The evidence in this case only goes to show that if the operation takes place and is successful then the child may live the normal span of a mongoloid child with the handicaps and defects and life of a mongol child, and it is not for this court to say that life of that description ought to be extinguished.”6

Templeman’s decision seems all the more extraordinary given the outcome of another English case that followed just three months later. 

R v Arthur

On 5 November 1981, Dr Leonard Arthur, a consultant paediatrician at Derby City Hospital was acquitted of the attempted murder of John Pearson, a baby in his care, born on 28 June 1980. Rejected by his parents on the grounds of his Down’s syndrome, Arthur ordered John to be sedated, noting: “Parents do not wish it (sic) to survive. Nursing care only.” He ordered five milligrams of dihydrocodine to be administered at four-hour intervals instead of food. It was understood that this would result in the baby’s death. During the trial, the prosecution told the court that: “the sedative was to stop the child sucking and it repressed the part of the brain which enabled it to breathe and control the opening of its lungs.”

Later that day a nurse was permitted to feed him but no medical assistance was provided. 

“The next day, June 30, by 2:30 pm it was whimpering and [a] nurse comforted the child… Its stomach was distended because of the non-functioning of the bladder and bowels. A nurse pressed the bladder and the baby passed water and blood. Its feet and hands were blue and it was trying to get air, flinging its arms upwards. It dribbled mucus. It was incapable of sucking and at 11:50 pm it took all the dosage given to it by tube… At 5:10 the next morning the baby died… The cause of death was given on the death certificate as bronchopneumonia due to the consequences of Down’s syndrome.”7

Arthur was originally charged with murder but a post-mortem examination revealed that John Pearson had been born with damage to his brain, heart and lungs. It was impossible to establish with sufficient certainty that these conditions played no role in his death. Arthur, of course, was unaware of any of these problems and acted only on the basis that the baby had Down’s syndrome and his parents did not want him. Nevertheless, the findings of the autopsy led Mr Justice Farquharson, the trial judge, to have the original charge of murder reduced to attempted murder. He also wanted no one on the jury who had contacts with disabled children or links to any organisation concerned with disability. Farquharson even suggested, wrongly, that it was lawful to sedate a baby while offering no further treatment, drugs, surgery or food provided the child was “irreversibly disabled” — a term he failed to define — and had been “rejected by its parents”. He drew a distinction between taking direct action to end a baby’s life and allowing nature to take its course. This is perhaps true in the sense that denying nutrition to an unconscious patient will naturally result in his death. This false distinction would re-emerge in 1993 in the case of Airedale NHS Trust v Bland when the Law Lords permitted the withdrawal of food and fluids from a man with a severe brain injury.8 It has cast a long shadow over the treatment of the profoundly disabled ever since.

Before the Arthur trial, it was not unusual for disabled new-borns in some British hospitals to be “left untreated and allowed to die”.9 By the 1970s, advances in medicine meant that increasing numbers of disabled children were surviving after birth. In 1975, Dr John Lorber of the Department of Child Health at the University of Sheffield authored a paper setting out the criteria for the selective non-treatment of potentially life-threatening conditions in infants born with spina bifida and hydrocephalus.10 Lorber’s concern was not that the surgery would be futile but that the lives of the children themselves would be futile. “The main object of selection,” he argued “is not to avoid treating those who would die early in spite of treatment but to avoid treating those who would survive with severe handicaps.” In August 1981, Lorber told The Times that an estimated 300 children with spina bifida were allowed to die each year.11

English Common Law has consistently recognised even the most profoundly disabled individual as a person with the same right to life as every other human being. Nevertheless, Lorber’s candid admission regarding the passive euthanasia of disabled newborns demonstrates the significant gap that may exist between medical ethics and the law. Indeed, had it not been for pressure from the pro-life lobby group Life it seems likely that Leonard Arthur would never have been brought to trial.

“Eminent doctors”

These two cases took place within the space of a few months and yet, the courts showed very different levels of respect for the lives of the children involved. While the law intervened to save Alexandra’s life, the man who deliberately sought to end the life of John Pearson was exonerated. To explain this apparent contradiction, we need only look at the divergent positions taken by the clinicians. In Alexandra’s case, her care team had challenged the wishes of her parents and, crucially, no doctor faced the threat of prosecution. In the Arthur trial, however, the status of the medical profession was at stake and that mattered more than the death of a disabled child. The excessive servility of the legal system can be clearly seen in Farquharson’s direction to the jury when he stated: “I imagine that you will think long and hard before concluding that eminent doctors have evolved standards that would amount to committing a crime.”12

This same fawning deference can be seen on almost every occasion that medical ethics come into conflict with the law. It was on display in 1939 when Aleck Bourne stood trial for carrying out an abortion on a 14-year-old girl raped by a group of soldiers. When addressing the jury, the judge Mr Justice Macnaghten described the abortion “as an act of charity”, performed at no charge by a “man of the highest skill” who believed that he was doing “his duty as a member of a profession”.13 Unsurprisingly, Bourne, like Arthur, was acquitted.

The trial of Leonard Arthur turned a spotlight on the euthanasia of disabled new-borns in British hospitals and despite the acquittal, the threat of further prosecutions meant that a new means to eliminate such children would have to be found. When Britain’s abortion laws were liberalised in 1967, the legislation that resulted bore a striking resemblance to the recommendations of the UK’s medical bodies.14, 15 And when that legislation was amended in 1990, it legalised abortion up to birth for the type of babies that Leonard Arthur and John Lobber believed would be better off dead. Since that time, pre-natal testing for disability has become increasingly widely available. While the word “mongoloid” has virtually vanished from the English language, children born with Down’s syndrome are also disappearing. In England and Wales, around 90 per cent of babies diagnosed with Down’s syndrome are aborted.16 A statistic that is replicated in other countries where eugenic abortions are legal.

The UK, like France, also has a well-organised campaign to introduce assisted suicide. The position adopted by the various representative bodies of the medical profession will play a decisive role in the success of that campaign. However, until medical ethics regains a healthy respect for human dignity the threat to the weak, the ill and the disabled will only continue to grow.

Notes

  1. ‘French citizen’s convention speaks out in favour of euthanasia‘, Christian Network Europe News (20 March 2023).
  2. Solène Tadié, ‘Citizens’ convention endorses legalisation of euthanasia and assisted suicide in France’, Catholic News Agency (27 February 2023).
  3. Jos M Welie, ‘The Medical Exception: Physicians, Euthanasia and the Dutch Criminal Law’ (1992) 17 J Med & Phil 419, 435.
  4. For a full account, see: Janet Read and Luke Clements, ‘Demonstrably Awful: The Right to Life and the Selective Non-Treatment of Disabled Babies and Young Children’ (2004) 31 4 JLS  507.
  5. Ann Shearer, Everybody’s Ethics: What future for Handicapped Babies? (CMH, 1984) p 1.
  6. Re B (A Minor) [1981] 1 WLR 1421, CA.
  7. Arthur Osiman, ‘Doctor denies murdering Down’s syndrome baby, 69-hour life of a mongoloid child’ in The Times (London, 14 October 1981) p 2.
  8. Airedale NHS Trust v Bland (1993, AC 789).
  9. John Lorber, ‘Ethical Problems in the Management of Myelomeningocele and Hydrocephalus’ (1975) 10 J Royal Coll Phys, 1, p 48.
  10. Ibid.
  11. Annabel Ferriman, ‘Doctor tells of babies who are allowed to die’ in The Times (London, 13 August 1981) p 1. 
  12. R v Arthur (1981) 12 BMLR at 22.
  13. R v Bourne (1939) 1 KB 687; (1938) 3 All ER 615 CCC. R 689-90.
  14. John Keown, Abortion, Doctors and the Law: Some aspects of the legal regulation of abortion in England from 1803 to 1982 (CUP, 1988) p 85.
  15. 15. Harvard constitutional law professor, Noah Feldman has also described the US Supreme Court ruling in Roe v Wade as “a decision that actually emphasises the rights of the physician.” See: Noah Feldman, ‘A reminder: Physicians were the key to Roe v Wade’ in Charlotte Observer (North Carolina, 24 May 2016).
  16. 16. ‘24% increase in abortions where baby had Down’s syndrome, as landmark case against UK Govt to be heard by Court of Appeal’ in Don’t Screen Us Out (21 June 2022).

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