Charlie Gard and best interests’ decisions

Charlie Gard – the legal journey

There has been a great deal of press coverage of the sad case of Charlie Gard who was born with a very rare genetic disease causing progressive muscle weakness and brain damage. Doctors at Great Ormond Street Hospital (GOSH) advised his parents that there was no prospect of recovery and that his condition was terminal.

From what we read in the papers, Charlie’s parents could not accept this advice. They wanted to take Charlie to America for treatment known as nucleoside bypass therapy (NBT). They had raised £1.35 million to pay for this.

In February this year, GOSH applied to the High Court for a ruling that life support should be withdrawn and replaced with palliative care.

GOSH experts gave evidence to the court that Charlie was blind, deaf and could not move. He could not breathe without a ventilator and was fed through a tube. They said that he had already suffered irreversible brain damage. They took the view that the NBT would not bring about any improvement in is condition and would only prolong his suffering.

It was impossible to know whether Charlie was in pain or not as he could not make any sound or move.

The parents’ case was that they wanted to exhaust all possible treatment and that the proposed treatment would not cause him any harm. They argued that Charlie’s brain damage was not as severe as the doctors thought. They felt that they as parents should be entitled to make decisions about Charlie’s treatment without the intervention of the State as long as the treatment would not cause significant harm.

In April, the court ruled that life support should end and palliative care be provided.

The parents then appealed to the Court of Appeal and lost. The Supreme Court refused permission to appeal. They then appealed to the European Court of Human Rights but the ECHR refused to intervene. The legal proceedings took several months during which Charlie’s condition continued to deteriorate.

In July, the parents returned to the High Court with fresh evidence from two hospitals that they would be prepared to treat Charlie. The court adjourned the case for two weeks to allow an American expert to examine Charlie. He did so and concluded that NBT would not improve Charlie’s condition.

The parents then gave up their legal battle, Charlie was transferred to a hospice and died on 28 July.

Managing the interests of brain injured clients

In my role as professional deputy, I manage the finances of brain injured clients and all my decisions must be made in the clients’ best interests. Under the Mental Capacity Act 2005, I have to take into account any evidence of the clients’ wishes and beliefs and I must also consult closely with family members who are caring for the client.

Making decisions in the client’s best interests is a sensitive exercise that requires humanity. Cases involving parents and their children are always fraught as it is difficult for parents to separate their own feelings from what is in the child’s best interests.

In this very difficult case, the court heard expert evidence that it would not be in Charlie’s best interests to receive NBT but also heard the parents’ evidence that they were desperate to try any possible treatment available.

Once an issue is litigated, the parties’ positions become entrenched and the outcome means that one side wins and the other loses. There are a number of commentators who have questioned the court’s decision. There is no doubt that if GOSH had agreed to let Charlie go to America for NBT, the parents would have avoided months of intensive litigation and the anger and bitterness that has resulted. It is impossible to say how the decision would have affected Charlie and that is why these decisions can be the hardest decisions that a court has to make.