To Die Or Not to Die: That Is the Question

22 September 2016

To Die or Not to Die:
That is the Question

Sir Alan Ward

To die or not to die, that is the question. It is a question which is now regularly having to be answered by judges in the Family Court. The answer is never easy. Hamlet asked the question when he contemplated his suicide asking

“Whether ‘tis nobler in the mind to suffer

The slings and arrows of outrageous fortune,

Or to take up arms against a sea of troubles,

And by opposing end them?

…

To die, to sleep;

To sleep: perchance to dream; ay, there’s the rub;

For in that sleep of death what dreams may come

When we have shuffled off this mortal coil,

Must give us pause.”

The decision whether someone is to die or is not to die places awesome, using the word correctly, awesome responsibility on the judge because there is no room for error, or, as Hamlet put it

“But that the dread of something after death,

The undiscovered country from whose bourn

No traveller returns, puzzles the will

And makes us rather bear those ills we have

Than fly to others that we know not of.”

When I started in law in South Africa as an articled clerk 60 years ago the decision whether someone was to die was taken by the judge trying a case of murder. There are no moments more chilling than when the judge is handed his black cap and pronounces, “You shall be taken from this court to a place of execution and there you shall be hanged by the neck until you are dead.” With the very recollection, the hairs stand on the back of my head as they did then. Visiting the condemned man in Pretoria gaol was a harrowing experience for a young lawyer. In one case I watched a tough husband full of bravado sentenced to death for shooting his wife and her lover, disintegrate into a stuttering, twitching wreck of a man eventually so sedated he had to be carried to the scaffold. On another occasion I had to tell a young African that his appeal had failed and that date for his execution had been fixed for the following week and I watched the wide grin of greeting change to a look of total terror. I need no persuading that the death penalty is a cruel degrading inhuman punishment.

With the abolition of the death penalty in 1965 I thought that deciding whether a fellow being should live or die would no longer trouble the judges. Far from it. The Family Courts and the Court of Protection are now regularly confronted with such problems and I can but give you examples from my own experience of 25 years on the Bench.

Is this child to die?

I was not long a judge and was out on circuit in Leeds when my list was interrupted to decide whether the hospital should insert a gastro-nasal tube to provide essential nourishment for a six-month-old baby. She was born with severe hydro-carefully hydro-encephalopathy requiring a tube to drain the excess fluid from the brain into the stomach. She was severely brain-damaged with the high-pitched whine of a child in that condition, curled in a foetal position, and requiring to be fed 5 ml, a teaspoon of nourishment drop by drop by the nurses devoted to her care. It was not enough and she was so undernourished that the draining tube was visible through her skin. The force-feeding would not save her and I held that the operation was not in her interests and that, in effect, she should be allowed to die with dignity. Although this was a case in wardship, I gave judgment in open court because I felt the public should know what the judges were doing. It was quite widely reported, one report to this effect:

“But one thing is fairly clear. Baby C was the victim of a conspiracy by doctors to kill her – a conspiracy to which a High Court Judge who was also her legal guardian, gave his support.”

Fortunately for me, the Court of Appeal upheld my decision see In Re C (A Minor) (Wardship: Medical Treatment) [1990] Fam 26. In truth it was not a difficult to decide that Baby C should die and I felt no remorse.

Is this child not to die?

Ordering someone to live was strangely much more difficult than allowing one to die. So I discovered when dealing with the case of my Jehovah’s Witness boy which so captured Ian McEwan’s imagination that he wrote The Children Act. This is the story. E was not quite 16 years old. He was a fanatical Spurs supporter but was taken ill on the terraces of White Hart Lane one Saturday afternoon. He had leukaemia and the hospital wish to treat him in the conventional way with a combination of drugs, one of which being non-specific attacked the bone marrow and so diminished the body’s ability to produce the necessary blood cells upon which our functioning depends. It is, therefore a necessary part of that conventional treatment for blood transfusions to be administered. E and his parents objected to blood transfusions because they were strongly devout members of Jehovah’s Witness and it was thus contrary to fundamental tenets of their faith. I heard the case as a matter of urgency on a Friday in September 1990.

The hospital’s case was stark. E’s haemoglobin, white cells and platelet counts had fallen to such dangerously low levels that E would die of a heart attack or a stroke or go blind before the cancer killed him. If he was not to have a blood transfusion by Monday, the hospital would have become very anxious for him. E and his parents opposed this with a quiet but powerful reliance upon their religious beliefs. My first and paramount consideration was the well-being of my ward - his welfare dictated my decision. I decided, perhaps a little unusually, that although I had a full report from the Official Solicitor on the boy’s wishes and feelings, I owed it to him to visit him to explain my role to him in person and so I took myself off to the hospital in West London at 5 o’clock on a Friday afternoon, leaving a Court of Appeal standing by to deal with the threatened appeal. Waving weeping relatives away I spent time with my ward. At times he became quite distressed and, as the hospital predicted in their evidence, he was already becoming worryingly breathless. I was quite satisfied that he did not have any sufficient comprehension of the pain he was yet to suffer, of the fear he was yet to experience and of the distress he would suffer as he watched his parents’and his family’s distress. I accepted the evidence of his father that life was precious and I concluded that I could not permit the parents to make a martyr of their son or for the child making a martyr of himself and so waste of a life of some promise. I finished my judgment at about 9:30 pm, now reported as Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 FLR 387, and was relieved to learn that my trip to the hospital had persuaded the family that contrary to their expectations, the court had heard their case with compassion and sensitivity and that they dropped their proposed appeal.

E did not resist the transfusion and recovered. In the paternalistic way in which judges had traditionally treated their wards, at one time mainly young runaway heiresses, with the Officials Solicitor’s consent, I was able to invite E and his father to the Directors’ box at Spurs to meet Gazza and Lineker and Venables and leave with an arm full of mementos. The light of life in his eyes made my decision all the more compelling. It was thus with shock that a decade or so later when sitting in the Court of Appeal I was referred to a subsequent decision following mine but with the sad footnote that E had a relapse in his mid-twenties, refused the necessary blood transfusion and died.

But what if one child has to die in order that another is not to die?

This was quite the most difficult decision I ever had to take. It arose in the case of In Re A (Children) (Conjoined Twins: Surgical Separation) [2001] Fam 147. It gave rise to extraordinary media attention and divided public and academic opinion.

The twins, Jodie and Mary, were four weeks old when the case came before the Court of Appeal in September 2000. Their parents were Maltese and reciprocal arrangements with Malta enabled an obviously difficult confinement to be entrusted under the National Health Service to a British hospital where, as it happened, the consultant paediatrician was himself Maltese.The girls were joined at the pelvis with spines and spinal cords fused. The bodies were fused from the umbilicus to the sacrum. Between two heads was a single torso about 40 cm long. Their legs and each perineum were rotated through 90° and pointed laterally. The nature of the conjoin produced a grossly abnormal laterally placed vulval configuration on each side. Internally each twin had her own brain, heart, lungs, liver and kidneys and the only shared organ was a large bladder. Jodie was capable of normal cardiac and pulmonary function and was described as

“Very sparkling, wriggling, very alert, sucking on a dummy and using her upper limbs in an appropriate manner, very much a with-it sort of baby.”

The tragedy was that Mary was severely abnormal in three key respects. Her brain was very poorly developed. Her heart was very enlarged and functioned very poorly. In terms of actually pumping blood out around the body it was doing very little work of its own accord. If Jodie were not covering Mary’s circulation Mary would not have been alive as a separate twin. Moreover there was a virtual absence of functional lung tissue and with the very abnormal cardiac function it meant that the doctors would not have been able to resuscitate her on birth. If separated from Jodie she was not capable of separate survival because of this grossly impaired cardiac and lung performance with no prospect of improvement or recovery. The harsh fact was that she lived on borrowed time, all of which was borrowed from Jodie.

Thus there were alas but two choices to be made for the twins. One was to leave them as they were, unable to move or even sit up appropriately. Jodie would, however, become increasingly at risk of heart failure because, as a cardiologist explained, it was like asking anybody’s heart to pump up to a 10 foot person. As her heart would progressively fail to pump blood through both babies, their kidneys would fail and their brains would be damaged. The prognosis was that Jodie’s heart would fail within 3 to 6 months. She would die and if Mary did not die simultaneously, she could not survive independently for longer than minutes rather than hours.

This was the option favoured by the parents. They were devout Roman Catholics whose priest accompanied them from Malta to give them comfort. They sincerely believed that the children were a gift from God, that God gave them to them as they were and if they were soon to die, that was God’s will and that was what should happen. They were adamant that everyone had the right to life and they could not countenance killing one of their daughters to enable the other to survive. Their faith in God left them happy for God’s will to decide what happened to their babies. So important was their faith to them that I invited submissions from the Archbishop of Westminster who appeared by counsel and submitted powerfully that human life is sacred and inviolable so that one should never aim to cause an innocent person’s death by act or omission. Because human life is a gift from God to be preserved and cherished, the deliberate taking of human life is prohibited except in self-defence or the legitimate defence of others. The good end of saving Jodie’s life would not justify the bad means of taking Mary’s.

The other option was surgically to separate the twins. Although surgically complicated, it was perfectly feasible. It was not expected that any structure or organ would be taken from either twin and donated to the other. The necessary new anal and genital reconstruction would be complicated but overall the prognosis was good. Separation of the spine would be achieved leaving reasonable normal mobility. There would be no major psychological consequences from the separation. In the result the twins would attain normal physical integrity. It would leave Jodie able to look forward to a normal life. But the consequence from Mary was, of course, that on cutting their common aorta, she would die soon afterwards. Despite Mary’s inevitable death, the hospital favoured separation in order to carry out their duty to Jodie and save her life.

The hospital applied accordingly for a declaration that would be lawful and in the children’s best interests to operate to separate the twins.

The main issues

Three areas of law fell for consideration, medical law, family law and criminal law.

The medical issue

It is well established that, as a general rule, the performance of a medical operation upon a person without his or her consent is unlawful, as constituting both the crime of battery and the tort of trespass to the person. Every human being of adult years in sound mind has a right to determine what shall be done with his own body and that right of veto is absolute notwithstanding that the reasons for making the choice may be regarded as rational or irrational, unknown or even non-existent. To this extent the principle of the sanctity of human life must yield to the principle of self-determination and the doctor’s duty to act in the best interests of his patient must likewise be qualified. Where the patient is a child, it is abundantly plain that the law recognises that there is a right and a duty of parents to determine whether or not to seek medical advice in respect of their child and, having received advice, to give or withhold consent to medical treatment. Because the parental rights and powers exist for the performance of their duties and responsibilities to the child, they must be exercised in the best interests of the child and the common law has never treated such rights as sovereign or beyond review and control by the court. In the event of disagreement about the course of treatment, the hospital fulfilled its duty to the patient by applying to court to resolve the dispute. The court would then have to make the decision and could not hide behind the decision of the parents or the decision of the doctors. In making its decision, the court’s first and paramount consideration is the welfare of the children.

The family law issue

Where did the best interests of the twins lie?

As for Jodie, prolonging her life and giving her the normal expectancy of life and the expectation of a normal physical, mental and sexual life was obviously in her best interest.

But what about Mary? The judge found that the remaining months of her life if not separated would be hurtful, worth nothing and very seriously to her disadvantage. With great respect I could not agree. The sanctity of life doctrine holds that human life is created in the image of God and is therefore possessed of an intrinsic dignity which entitles it to protection from unjust attack. The right to life is essentially a right not to be intentionally killed. There can be no question of approving, even in a case of the most horrendous disability, a course aimed at terminating life or accelerating death. The sanctity of life doctrine does, however, acknowledge that it may be proper to withhold or withdraw treatment where the prospective benefits of treatment do not clearly warrant the burdensome consequences it is likely to impose such as physical pain, psychological stress, or social dislocation. I concluded that it was impermissible to deny that every life has an equal inherent value and life is worthwhile in itself whatever the diminution in one’s capacity to enjoy it and however gravely impaired some of one’s vital functions may be to engage in an assessment of relative incapacity or infirmity. To conclude that one life is intrinsically worth less than another is the first step on a very dangerous road indeed and one which I was not willing to take. I could not find that bringing Mary’s life to an end before it had run its natural span was in her best interests. There was no countervailing advantage for her at all in being separated from Jodie. On the contrary it was against her best interests and looking at the matter from her position in isolation and ignoring, therefore, the benefit to Jodie, the court should not sanction the operation on her. The court was thus on the horns of the sharpest dilemma – how does the court reconcile these conflicting interests?

Regard for the parents’ wishes