The legal battle over the treatment of Charlie Gard, between his parents (Connie Yates and Chris Gard) and Great Ormond Street Hospital (GOSH), where he was being treated, was a high profile case which attracted global media coverage.
Charlie had an ‘inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome’, known as “MDDS”. His parents raised funds to cover ‘experimental treatment’ in America, nucleoside therapy, however, GOSH concluded that this ‘would not improve Charlie’s quality of life’. As there was a disagreement over the best treatment for Charlie, ‘GOSH applied to the High Court for judges to decide whether withdrawal of ventilation and providing palliative care instead of experimental treatment was in Charlie’s best interests’; this is a ‘standard legal process’ when there is a disagreement between medical professionals and parents regarding a child’s treatment.
The High Court ruled in favour of GOSH; Charlie’s parents subsequently took the case to the Court of Appeal, followed by the Supreme Court, but both ruled that the High Court decision stood. The case was considered by the European Court of Human Rights, where judges concluded that they would not intervene, before returning to the High Court, where a final ruling was given to withdraw the ventilator and provide Charlie with palliative care in a hospice. You can find a timeline of the legal proceedings in this BBC report.
The legal proceedings regarding Charlie’s treatment took place during 2017; however, the high profile nature of the case, the continued media coverage, and the ongoing campaigning by Charlie’s parents through the Charlie Gard Foundation charity, means this remains a topic that you may be asked to discuss.
The basis of the judgements in the case of Charlie’s treatment was the consideration of what was in his ‘best interest’. Ethical guidance states that where decisions are being made on behalf of a patient, in this case because they are a child, then that decision ‘must be of overall benefit to them’; this is ‘consistent with the legal requirements to consider whether treatment [...] is in the patient’s ‘best interests’. Although the guidance is clear on the ethical and legal requirements to act in the ‘best interest’ of the child, this is still problematic, as the judgement of what this is can vary between individuals, as in this case, with Charlie’s parents and GOSH both believing that what they were proposing in terms of treatment was in his best interest.
This also raises the ethical issue of autonomy / consent and who should make decisions about treatment if the patient is unable to do so. In the case of children, parents have legal ‘parental responsibility’ and ethical guidance states that they should be involved in making decisions; however, doctors must ultimately make the patient ‘their first concern’ and act in their best interest. This can create issues when medical professionals and parents disagree about the best treatment for a child, as was the case for Charlie. The GMC’s ‘decision making and consent’ document provides guidance on resolving disagreements about a patient’s treatment and outlines that you ‘may need to apply to an appropriate court or statutory body for review or for an independent ruling’, which are the steps that were ultimately taken in the Charlie Gard case.
The medical ethics section of this guide provides more information on consent and ‘parental responsibility’ in relation to the medical treatment of children. To support your preparations, consider the ethical implications of this topic and how to respond to questions relating to these, should they arise in your medical school interview.
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Having a reasonable understanding of the topic and the medical implications relating to it will support you to discuss this coherently during your interview, should you be required to do so. Below you’ll find some areas which you may want to research further, to widen your understanding of the topic, followed by information on relevant ethical guidance which will support you to make ethical links in your discussions.
The following are areas which you may find useful to research further:
The following ethical documentation will be useful to develop your knowledge of the ethical implications of this topic and to support your answers, should you be asked about it during your interview:
You may also want to consider why this was such a high profile case and what this tells you about the ethical considerations involved and the implications of the decisions made in regards to these.
To further your understanding of the topic, and in particular the ethical links, you may want to consider researching some medical articles relating to the Charlie Gard case. You’ll find some examples below, but you may want to explore this further and find additional articles:
Mainstream media publications may also be useful, in this instance, to gain an understanding of how this was presented in the media and to gain a general overview of the topic, if you need to. You may also want to explore similar cases, to draw comparisons and to support you to explain the ethical implications of cases in which medical professionals and parents disagree on the treatment method which is in the ‘best interest’ of the child. Some examples are that of Alfie Evans (you can find a timeline of the events of Alfie Evans’s case here) and Pippa Knight. A High Court judge ruled in favour of doctors stopping Pippa’s life-support treatment in January 2021 and it has been suggested in the media that Pippa’s mother will challenge this ruling at the Court of Appeal; you may find it useful to follow this case as it develops.