NHS Hot Topics: Understanding The Charlie Gard Case

NHS Hot Topics 2017: Understanding The Charlie Gard Case


The situation of Charlie Gard is one of the key NHS hot topics of this year due to the legal and ethical issues surrounding the case.

The case:
Charlie Gard, born on the 4th August 2016, was diagnosed with infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) by doctors at Great Ormond Street Hospital. This meant he suffered from severe organ failure causing his body to deteriorate. After several months on life support UK doctors and the High Court recommended that Charlie’s life support be discontinued. This ruling came against the parent's wishes to take Charlie to the US for continued treatment by Dr Michio Hiarno, an America neurologist what advocated nucleoside bypass therapy, untested on either humans or animals with MDDS. Charlie's parent's managed to raise the £1.3 million needed for the treatment largely due to the impact of digital media channels. The battle between Charlie's parents and UK Doctors and The Courts raised huge ethical questions.


What were the legal issues surrounding the case?

  • In situations where the doctors and parents cannot agree on the best treatment for a child, the case is presented to the High Court. They ruled that it was in Charlie’s best interests to withdraw his life support.
  • Charlie’s parents also appealed to the European Court of Human Rights, but it was concluded that undergoing experimental treatment with ‘no prospects of success… would offer no benefit’.
  • Charlie Gard’s life support was duly removed and he died on the 28th July 2017, at 11 months old.

What were the ethical issues surrounding the case?

Autonomy - the rights of parents to make decisions for their children.

Much of the media attention to the Gard case has focussed on the rights of parents in decision-making for children. However, The 1989 Children's Act makes it clear that where a child is at risk of harm the state can and should intervene. This sees doctors oppose the decision of parents as was the case with Charlie Gard.

Daniel Sokol, a medical ethicist and barrister, says the case has shone a light on this issue. "It reminds us that the rights of parents over their children are not absolute. They are limited by what is in the best interests of the child."

Best interests

  • The High Court concluded that the chance of success was too low to justify the trauma that Charlie may have experienced as part of the treatment, and that a successful procedure wouldn’t have yielded a sufficient quality of life.
  • The decision was, of course, highly controversial. Dr Hirano, for one, argued that the alternative to ongoing treatment and care was certain death, and that a slight chance was better than none.
  • This argument then raises the question of where the threshold for what is worth attempting should lie – even a 0.1% chance of success equates to a saved life for every thousand cases. Ignoring the statistics, many question whether one can ever declare another human being’s life worthless.

What might I be asked about the Charlie Gard case?

  • What are the ethical issues surrounding the Charlie Gard case?
  • Should doctors or parents decide on the best treatment for a child?
  • Should patients have the right to experimental treatment?