Born on the 4th of August 2016, Charlie Gard appeared to be a healthy child. After a month, his parents noticed Charlie was unable to support himself or lift his head, which is something other infants his age are able to do. The weeks that followed saw Charlie unable to gain weight despite a regular feeding programme, and he was transferred to Great Ormond Street Hospital.
Charlie was later diagnosed with infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), caused by a mutation in the RRM2B gene. Charlie’s case was one of just 16 known cases of RRM2B-related MDDS.
He inherited this disease because both his parents were carriers of the recessive gene. Charlie’s brain, heart, liver, kidneys and his ability to breathe were severely affected. He also had congenital deafness and epilepsy.
Charlie suffered from severe progressive muscle weakness, which meant that he couldn’t move his arms or legs or breathe unaided. He couldn’t open his eyes, which weren’t developing properly. It was impossible to tell if he was in pain and whether he was awake or asleep.
A High Court ruling recommended that Charlie’s life support be stopped.
After the ruling, neurologist Dr Hirano offered to continue treatment in the US. Dr Hirano claimed there was a 10% chance that treatment could improve the baby’s condition – despite never meeting Charlie in-person.
Experts at Great Ormond Street Hospital feared the treatment wouldn’t help and would prolong his suffering.
Charlie’s parents accepted Dr Hirano’s offer of experimental treatment and raised the £1.3M travel and treatment costs through crowd-funding campaigns. They believed, as did their supporters, that it was their parental right and responsibility to give their child any and all life-saving treatment they could.
They made an appeal to stop his life supporting being switched off, so they could take Charlie to the US. It was denied when it was taken to the Supreme Court and at the European Court of Human Rights, their appeals were further denied.
It was concluded that Charlie was probably “being exposed to continued pain, suffering and distress” and that undergoing experimental treatment with “no prospects of success… would offer no benefit”.
He died on the 28th July 2017, aged 11 months old, after his life support was removed.
Alfie Evans suffered from a degenerative neurological condition. He was admitted to hospital in December 2016 after suffering seizures and remained a patient.
His parents wanted to fly Alfie to Rome for further treatment, which the Alder Hey Children’s Hospital described the decision as “futile, unkind and inhumane.”
At 23 months old, the courts ruled for his life support to be removed.
You should understand the impact of these two cases on the NHS and law in the UK.
It’s estimated that there are 49,000 children and teens in the UK suffering from potentially life-limiting diseases. This number is only expected to rise as new medical advancement mean sick babies are able to live for longer.
Key things to know:
There are three key reasons why life-sustaining treatment is withheld or withdrawn:
1. Autonomy: A competent patient refuses it.
In Charlie’s case, his parents acted on his behalf due to his age and mental state.
2. Distributive justice: expected benefit is insufficient to justify public resources being used
The National Institute for Health and Care Excellence (NICE) recommends treatment at £30,000 or less per Quality-Adjusted Life Year (QALY).
Nucleoside bypass therapy was fairly inexpensive, but the cost of ongoing intensive care was estimated at £150,000. Furthermore, Dr Hirano’s best possible outcome was 10%, giving Charlie a shortened lifespan with a severe disability.
This is how you breakdown the sums for Charlie’s case:
However, the money was raised privately, so the funds were illegible for redistribution. The legitimacy of the distributive justice argument is uncertain.
3. Treatment is not actually the best thing for the patient
This is why the parent’s appeals were rejected. The High Court concluded that the success was too low to justify the trauma Charlie would experience. The success of the procedure also wouldn’t have meant a sufficient quality of life.
This was a controversial decision. Dr Hirano argued that a slight chance was better than none, whilst the ongoing treatment was care was certain death.
One of the responses to the decision was that treatment should be given in order to have better insight and improve the chances of successful treatment for the next MDDS patients. As the court rules only in the interest of the child in question, this is unlikely to influence a judges’ decision.
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