In this series of articles, medical students from across the country will discuss a range of topics from medical ethics to the NHS to public health to medical conditions to clinical governance
The tragic 2017 best interest case of Charlie Gard has been heavily covered in the media. With statements of support from Pope Francis and President Donald Trump alongside numerous medical and scientific experts it has gained widespread public attention. The case was emotionally fraught and raised a number of difficult ethical questions.
Overview of the Case
Charlie Gard was born seemingly healthy and at full term in London in August 2016. However at 2 months old, he was admitted to Great Ormond Street Hospital (GOSH) intensive care with poor feeding, failure to thrive and respiratory failure. He was subsequently diagnosed with a severe genetic mitochondrial disorder – infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), a condition with his subtype (RRM2B) has only previously been reported in approximately 15 infants. The doctors felt that he had a very poor prognosis.
Infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) is a group of autosomally recessive disorder which cause a significant drop in mitochondrial DNA. There is currently no cure and it is typically fatal in infancy and early childhood.
Prognosis is the likely course of a disease
Charlie’s parents identified an experimental treatment, by a New York neurologist, which was based on nucleoside supplementation that might benefit Charlie. The doctors at GOSH planned to use this treatment at their hospital paid for by the NHS. However, in January Charlie developed evidence of seizures and experienced brain damage. The doctors at GOSH no longer supported this treatment for Charlie, forming the view that it was futile and might prolong suffering. Despite this, Charlie’s parents still wanted the treatment and quickly raised funds for him to travel to the USA where a US physician had offered to provide it.
The doctors at GOSH did not feel that Charlie being transferred overseas for treatment was in his best interests, so they applied to the Family Division of the High Court on 28 February for permission to withdraw life support and to provide palliative care. On the 11th of April Justice Francis ruled in favour of GOSH. Charlie’s family appealed, and the decision was reviewed and upheld in the Court of Appeal, Supreme Court and European Court of Human Rights. Plans were therefore made to withdraw medical treatment.
In July 2017 GOSH applied to the high court for a new hearing. This was following GOSH receiving a letter signed by several international practitioners claiming to provide new evidence supporting the potential treatment for Charlie. At the request of the judge, a US mitochondrial specialist reviewed Charlie in London. He determined that, with new evidence of the severity of Charlie’s condition, experimental treatment would be futile. On the 24th of July Charlie’s parents withdrew their application to the court. Charlie tragically died 4 days later in a hospice.
Ethical Questions Posed
Would it be in Charlie’s best interests to receive continued intensive care and nucleoside treatment?
Given the best possible treatment outcome for Charlie, would life in his impaired state be a life worth living?
When should parents’ requests for medical treatment be overruled?
What constitutes ‘significant harm’ to justify overruling parents?
Should parents be allowed to take their child overseas for medical treatment unavailable in their home country?
If there are contradicting views over treatment for patients, should it matter if these come from health professionals in different countries?
Should, and if so when should treatment be denied on the basis of limited public healthcare resources?
If parents are able to pay for treatment, should that change the permissibility of continuing/providing treatment?
How should decisions about allocation of resources be made for individual patients?
Experimental Treatment
Should we have a lower access threshold for patients who have no other options? Without the experimental treatment offered, Charlie faced certain death. Yet, it was rejected on the basis that it had no known benefit, given that it had never been previously trialed on any patients with Charlie’s illness. This suggests a Catch-22 as new evidence can only be gained by patients trying the new treatment. Furthermore, Charlie’s condition was very rare so large trials could not be performed and animal models could not be constructed in time to help Charlie.
With everything to gain and nothing to lose this posed a difficult decision for the doctors looking after Charlie. Ultimately. they acted in his best interests.