Charlie Gard and Alfie Evans Cases

Key Patient: Charlie Gard

Born on 4th August 2016, Charlie Gard appeared to be a healthy child. After a month, his parents noticed that 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.

Potential Treatment: Nucleoside Bypass Therapy

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 only prolong his suffering.

What was the treatment?

• It’s called nucleoside bypass therapy. This explains more about the treatment.
• It was untested on human or animals with RRM2B-related MDDS – but it has been shown to have some positive effects on test subjects with other mitochondrial conditions.
• It had been used in 18 cases already – but Charlie’s condition was far more advanced.
• All of the other cases involved people who suffered from a mutation in the TK2 gene, not the RRM2B gene, which is a different form of mitochondrial DNA depletion.
• The patient must ingest compounds needed to develop new DNA strands which their body could not otherwise produce.
• There was no evidence to suggest that the treatment would be able to cross the blood-brain barrier and resolve Charlie’s brain damage.

The Legal Battle To Continue Treatment

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 support being switched off, so they could take Charlie to the US. The appeal was denied when it was taken to the Supreme Court, and their appeals were further denied at the European Court of Human Rights.

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 28th July 2017, aged 11 months old, after his life support was removed.

Key Patient: Alfie Evans

Alfie Evans suffered from a degenerative neurological condition. He was admitted to hospital in December 2016 after suffering seizures and remained a patient there.

His parents wanted to fly Alfie to Rome for further treatment, but 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.

Read more about this case on the BBC.

Impact on the NHS and UK Law

You should understand the impact of these two cases on the NHS and on law in the UK.

It is 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 advancements mean that unwell babies are able to live for longer.

Key things to know:

• The Royal College of Paediatrics and Child Health (RCPCH) believes that such cases are “traumatic and distressing”, and this could lead to difficulties in recruitment and retention of vital NHS staff.
• Conflicts between Doctors and parents are challenging. Read the RCPCH’s guidance on how to handle this.
• Charlie Gard’s parents are advocating for a change in the law in order to prevent other parents from going through a similar court case. They want judges to ask whether the parents’ choice of treatment would cause significant harm, and if not, they should be allowed to test their options.
• The change would allow independent medical mediators to get involved in any disagreements as early as possible, which aligns with new advice from RCPCH.

The Ethical Dilemmas

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.

In Charlie’s case:

• The quality of Charlie’s potential adulthood life was estimated at 0.3 of a possible 1.0, due to the severity of his disabilities.
• When you multiply that over 50 years, you get 15 Quality Adjusted Life Years (QALYs).
• The likelihood of the treatment working, however, was estimated at only 10%, reducing the QALYs to 1.5.
• At a cost of £150,000, the cost per QALY for Charlie’s treatment was £100,000 – over three times the advisory limit.

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 parents’ appeals were rejected. The High Court concluded that the success was too low to justify the trauma that Charlie would experience. The success of the procedure also wouldn’t have meant a sufficient quality of life.

This was a controversial decision and Dr Hirano argued that a slight chance was better than none.

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 judge’s decision.

Interview Questions

Understanding the key issues of the Charlie Gard and Alfie Evans cases gives you two really strong examples to use when answering ethics questions during your interview. Some example questions you could be asked include:

• What are the challenges you expect to face as a Doctor?
• Imagine that existing medications have been suggested as a possible new way to treat a different disease. If there is a very limited evidence base to support the use of these medications in this way, should we try these treatments or not?
• Why is it important to maintain the dignity of a patient?

Check out our Interview Question Bank which has over 100 other questions and answer guides for your practice.