Charlie Gard – Should parents be allowed to refuse doctor's advice?
The case of Charlie Gard is again one that can come up in medical school interviews. The case raises ethical and moral dilemmas. Again I think they are less likely to ask you directly ‘what you know about the Charlie Gard case?’. However is it fair game to ask you questions in which your knowledge of the case would help you frame an evidenced based response to hopefully get you top marks.
Summary of the points in the Charlie Gard Case
Charlie was a baby with a rare genetic condition called mitochondrial DNA depletion syndrome
His UK doctors felt he had no chance of recovery. With this in mind, they felt it appropriate to withdraw medical treatment and make Charlie as comfortable as possible before his death
Dr Hirano was an eminent and well-respected neurology professor from Columbia University in the United States. He proposed that an experimental treatment may provide some benefit
Due to a lack of scientific evidence to back up Dr Hirano’s claim, the UK doctors looking after Charlie felt that it was not in his best interests to travel to America to have the treatment
The doctors were seeking declarations that in the eyes of the law it was in Charlie’s best interests to be withdrawn from artificial ventilation and palliated.
They also wanted the court to declare that it was within the law, as it was in Charlie’s best interests, that he did not undergo experimental therapy in the United States.
UK courts agreed. European court of human rights refused to rule.
Dr Hirano flew over and claimed it was too late to start therapy
Come and learn more about Charlie Gard and other issues around consent and capacity on our medical school interview course. Learn how to apply the theory in the case to medical school MMI stations. Take the hot seat and get feedback from medical school tutors.
CLICK TO LEARN ABOUT CHARLIE GARD, ETHICS AND CONSENT ON OUR MEDICAL SCHOOL INTERVIEW COURSE
Let’s have a look at the case in more detail.
It was 28th of July, 2017, when Charlie Gard of West London, an infant of 11 months of age took his last breath. He was born with a rare condition called Mitochondrial DNA depletion syndrome (MDDS). It is a rare genetic disorder which causes loss of muscle control and progressive brain damage with no known medical treatment as of yet. .
His case was one of the most controversial and debated ethical issues during the 2017 as his doctors at the Great Ormond Street Hospital (GOSH) where he was admitted to, suggested that he should be provided with palliative care. In other words the doctors said there was no further treatment available for Charlie that could help with his disease and any care that was given should keep him comfortable until he passes away.
But his parents, Chris Gard and Connie Yates had objections against this suggestion and wanted to continue to explore other avenues for treatment and not just give up just yet. During that time, Dr Michio Hirano, a New York neurologist was working on an experimental treatment based on nucleosides supplementation with human MDDS patients. The Gard family believed that Michio Hirano would be able to offer further treatment for Charlie, albeit it was experimental.
Later, in January of 2017, Charlie went through a severe seizure that caused further brain damage and the doctors said at this point any further treatment would not result in improvement of his health, instead will prolong his suffering. The Gards still insisted on trying the experimental treatment. They raised about 1.3 million pounds from crowdfunding sites for moving Charlie to New York believing it will save their child. The doctors from Great Ormond Steert Hospital felt this would not be the best option for Charlie and here the conflict begins.
Concerned about the baby’s unfortunate sufferings, the hospital approached the British High Court and asked for an override to the parent’s decision to send Charlie abroad and got the support of the court. This initial decision was appealed against by the Gard family. The case then went on from British High Court and ultimately to the Supreme Court to the European Court of Human Rights.
Petitions were coming from all over the world for allowing the child’s treatment. Even the president of the USA, Donald Trump and the pope showed their concerns regarding Charlie’s case. Despite a long struggle of the parents, at every British court the rulings were in favour of terminating Charlie’s treatment and letting him die with dignity without prolonging his suffering thus taking the side of his doctors. The European court of human rights refused to rule. Eventually, the parents agreed with the doctors in Great Ormond Street in providing palliative care for Charlie.
It is to note that Dr Hirano did visit Charlie at GOSH during the second hearing of the judges in the High Court. But he concluded that it was too late for the baby, who has about a 10% chance of making any meaningful recovery. It is also to note that, Hirano’s experimental treatment was actually more of a therapy which would not yield much in the case of Charlie rather making him suffer more.
So how is the case of Charlie Gard tested at interview?
There are several issues that can be raised. Should doctors be able to overrule the wishes of parents? Should parents be allowed to try experimental treatment, even if there is no evidence for it?
Come and learn more about Charlie Gard and other issues around consent and capacity on our medical school interview course. Take the hot seat and get feedback from medical school tutors.
Click to learn about Charlie Gard, Ethics and Consent on our Medical School Interview Course
