Dame Elizabeth Butler-Sloss, President of the Family Division of the High Court, recently addressed a conference on Withholding Treatment. She said that the law had a crucial role to play in resolving difficult decisions where patients, families and doctors did not agree on what would be in the best interests of a critically ill patient. It was often the role of the law to set limits on what was appropriate. She explained that, at the end of the day, it is for the judge to say whether the proposed management of the case is lawful and for the doctors to go away and decide what to do. In her words, "the buck stops with the doctors and not with the judge".
There have been three recent high profile cases, involving a terminally ill man and two seriously ill babies. In July, Mr Justice Munby allowed Mr Leslie Burke the right to decide for himself whether he should receive artificial nutrition and hydration after his congenital degenerative brain condition had deteriorated to the extent that he could no longer give or withhold consent. He considered that there was a strong legal presumption in favour of life. Treatment should only be withdrawn if certain criteria were met, in particular that it would be intolerable for treatment to continue.
In October, Mr Justice Hedley ruled that Charlotte Wyatt should not be revived if she stopped breathing again. Charlotte had chronic respiratory and kidney problems, coupled with the most profound brain damage that left her blind, deaf and incapable of voluntary movement or response. In making his ruling, the judge agreed with the views of Charlotte's doctors as to what was in her best interests and did not accept her parents' submissions.
Dame Elizabeth herself presided over the case of Luke Winston-Jones, who suffered from Edwards's syndrome, a rare genetic disorder. She gave permission for Luke's doctors to withhold treatment by mechanical ventilation if his condition deteriorated. That moment arrived on 12 November and Luke died. His mother has now made a formal complaint to the police about the refusal of the doctors to carry out procedures that the family believe would have prolonged Luke's life.
These cases show how difficult it is to apply the established legal principles to individual cases. Even if the principles are clear, the way in which they are applied may be vigorously disputed by the interested parties.
In the case of withholding treatment from a child, the guiding principle is the child's best interests. The court requires the fullest possible medical evidence as to the nature of the underlying condition, the present state of health of the individual and the prognosis if each of the available treatment options is followed. It is very important for the doctors to work in partnership with the parents of a terminally ill baby and to keep them fully informed and enlist their consent at every turn. As well as being good practice, this approach acknowledges that they hold parental responsibility by virtue of sections 2 and 3 of the Children Act 1989. It includes the right to consent to or refuse treatment on the child's behalf. No one else has that right except the court where its jurisdiction has been invoked.
If there is no unanimity between the doctors as to the way ahead, the court will examine the options and seek to resolve the impasse. The aim is to establish what is in the best interests of the child. The concept of best interests encompasses medical, emotional and all other welfare issues. It therefore goes far wider than purely medical issues.
In a case in 1991, the Court of Appeal said that there is without doubt a very strong presumption in favour of a course of action which will prolong life, but it is not irrebuttable. Account has to be taken of the pain and suffering and quality of life the child will experience if life is prolonged and what is involved in the proposed treatment itself. There will be cases where it is not in the interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefit.
Where children are concerned, the law places final responsibility on the judge because the court is discharging its historic duty of overseeing the best interests of those who cannot make decisions for themselves. In exercising this jurisdiction, the court has the power to override the views of the parents as to what is best for their child. (There is no equivalent power in the case of an adult patient.)
In both Charlotte's and Luke's cases, the judges came to the conclusion that further aggressive treatment, even if necessary to prolong life, would not be in the best interests of the patient. It was recognised that the child might die earlier than otherwise would have been the case but the moment of death would be only slightly advanced.
Having reached its decision, what form of relief does the court grant? There will not be an injunction or a positive declaration. The court’s order does not relieve the doctors of the right or responsibility for advising or giving the treatment they and the parents think right in the circumstances. All the court did in Charlotte Wyatt’s case was to authorise them not to send the child for artificial ventilation or similar aggressive treatment. The case of Luke Winston- Jones illustrates that the parents may still be distressed at the eventual outcome, despite the best efforts of the court to examine all the evidence dispassionately.
Medical staff and their employing trusts will continue to need experienced legal advice in steering a course through the minefield these cases represent.
Originally published in January 2005.
© RadcliffesLeBrasseur
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