The Charlie Gard Case

The Charlie Gard case was a ‘best interests’ case in 2017, concerning an infant boy with Mitochondrial DNA Depletion Syndrome (MDDS), a rare genetic disorder that causes progressive brain damage and muscle failure.

Currently, it has no effective treatment options and causes death in infancy. Charlie seemed to develop normally at first, but after a while his parents noticed that he seemed to be losing the ability to lift his head, and they took him to their GP. On 2 October 2016, they reported that he was being breastfed every 2–3 hours but was not gaining weight. He was then fed a high-calorie formula through a nasogastric tube, and an ECG and cranial MRI scan were performed on 7 October.

In October 2016, Charlie was transferred to London’s Great Ormond Street Hospital (GOSH), because he was failing to thrive and his breathing was shallow. He was placed on mechanical ventilation and MDDS was diagnosed. In mid-December, he began having persistent seizures as his brain function deteriorated. He had become deaf, his heart and kidneys were failing, and he could no longer breathe or move independently. It was unclear whether he could feel pain.

The case then become controversial, because the medical team and Charlie’s parents disagreed on the matter of whether experimental treatment was in the best interests of the child.

A neurologist in New York, Michio Hirano, who was working on an experimental treatment based on nucleoside supplementation with human MDDS patients, was contacted. He and GOSH agreed to proceed with the treatment, paid for by the NHS, but on condition that is was carried out at GOSH.

Hirano was invited to travel to London, but was unable to come at that time. In January, Charlie had further seizures, causing irreversible brain damage. GOSH thought further treatment might prolong suffering. They proposed ending life support and providing palliative care.

Charlie’s parents, however, wanted the experimental treatment to proceed, and on 30 January 2017 launched an appeal on the crowdfunding website GoFundMe to finance experimental treatment in the United States. They raised 1.3 million pounds. The courts did not stop the campaign.

In February 2017, GOSH asked the High Court to override the parents’ decision, questioning the potential of nucleoside therapy to treat Charlie’s condition.

The British courts supported GOSH’s position.

The parents appealed the case to the Court of Appeal, the Supreme Court and the European Court of Human Rights.
The initial decision of the court was to uphold the appeal.

In July 2017, several international practitioners defended the potential of the treatment to be of benefit to Charlie, claiming to provide strong evidence in its favour.

GOSH applied to the High Court for a new hearing.

Hirano visited Charlie at GOSH during the second hearing, at the request of the court, and determined that it was too late to help Charlie.

The parents agreed to the withdrawal of life support.

Charlie was transferred to a hospice where mechanical ventilation was withdrawn, and he died peacefully the following day.

The case attracted widespread attention around the world.

A passionate debate ensued over Charlie’s right to live or die, over his parents’ right to choose for their child, and over whether his doctors had an obligation to intervene in his care.

Timeline of events

4 Aug 2016 Charlie born
11 Oct 2016 Charlie hospitalised with MDDS
mid-Dec 2016 Charlie has seizures, indicating worsening condition
30 Dec 2016 Hirano and GOSH discuss possible experimental treatment
mid-Jan 2017 Worsening seizures precipitate brain damage
30 Jan 2017 Parents begin fundraiser for treatment
24 Feb 2017 GOSH asks UK court to order change from ventilator to palliative care
11 April 2017 UK court orders change from ventilator to palliative care
23 May 2017 Court of Appeal dismisses parents’ claim
8 June 2017 Justices deny appeal to the Supreme Court
27 June 2017 EU Court of Human Rights declines case
17 July 2017 Medical experts, including Hirano, conclude treatment is futile
24 July 2017 Parents formally withdraw opposition to palliative care
25 July 2017 UK court affirms order to change from ventilator to palliative care
28 July 2017 Charlie dies

The court ruling in February 2017 determined, among other things:

• That Charlie lacked capacity to make decisions regarding his medical treatment:
• That artificial ventilation be withdrawn
• That it was lawful for his treating clinicians to provide him with palliative care only
• That it was lawful, and in Charlie’s best interests, not to subject him to nucleoside therapy

The case of Charlie Gard raises arguments surrounding the ethical and moral concepts of ‘beneficence’ and ‘non-maleficence’

Arguments:

• Was there an argument that the benefit offered by the proposed experimental nucleotide treatment, however small it might be, might be a better prospect than death?
• Was there an argument that the benefits of the proposed experimental treatment outweighed any potential harm, bearing in mind the fact that modern medicine is such that the pain and suffering caused by the artificial ventilation and suction can be fully ameliorated?
• Was there the likelihood of the experimental treatment prolonging either life itself, or the quality of the remaining life:
• Assuming the experimental treatment was successful, was the length of time Charlie could survive too low to justify the cost of the treatment.
• How could the “vanishingly small” possibility of benefit from the experimental treatment be weighed against the “significant negatives” in the argument.
• Even if the experimental treatment might have been to some degree successful, was it morally right to spend so much money, given the likely limited benefit? Or, was this not a relevant argument, given that the parents had raised sufficient funds to pay for the treatment themselves?
• Should society always have a financial stake in how communal services are used? Should it have a legitimate claim on insisting that these resources be used wisely and for the benefit of all?

It has been argued that the case of Charlie Gard had a negative impact on distributive justice, as Great Ormond Street Hospital incurred legal costs of £205,000

What about the law?

• The ‘No Delay’ principle of the Children Act 1989 [note 3] was in conflict with the duty of the courts to do justice by all the parties.
• The parents had a right to contest the matter and to take it through the three appeal stages. The fact that parents had no other alternatives contributed to delay. The delays were repeatedly quoted throughout the case.

In retrospect, of course, it would have been better for Charlie to have received the requested treatment 6 months earlier, when first suggested, than to have had the protracted legal dispute.

In this instance, his parents may have accepted withdrawal of treatment earlier, if the experimental treatment had been tried and been shown to have had no benefit.

Parental discretion over the treatment of children is constrained

• Parents’ rights to make medical decisions for their children are more limited than their rights to make decisions about their own health.
• Parents have an important role in decision-making, when it comes to their children’s health care, but there are situations where they might be overruled.
• Treatment may be provided if parents agree to it or withheld it if they do not, but the opposite can also apply.
• If providing a treatment would be harmful, it will not be provided, even if parents strongly desire it.

Questions to consider:

• What are the ethical dilemmas you might face as a doctor with respect to this case?
• Do you feel the parents and courts prolonged Charlie’s suffering?
• What was the right approach, given the treatment may have only provided marginal benefits?
• To what extent should parents have a say in the children’s treatment.
• Should parents’ wishes or rights carry more weight than the expert opinion of a doctor?