This afternoon the long-running, deeply tragic and emotionally fraught legal dispute over treatment of Charlie Gard reached its sad and sadly inevitable conclusion. Following further medical assessment of Charlie by several international experts, Charlie’s parents and doctors finally reached agreement that continuing life support and experimental treatment could not help him.
This is the worst possible outcome for Charlie’s family. They have had to accept the devastating news that their beloved son cannot recover and that their hopes for an experimental treatment cannot be realised.
There are important lessons to learn from this case. Cases of deep disagreement between parents and doctors about treatment for a child are rare. Where they occur, it is often possible with time, patience, and support to find common ground. Where agreement cannot be reached, there is an important role for the courts in helping to reach a decision. However, court review of cases like this is not ideal. It is adversarial, costly, and lengthy. In this case, Charlie has received months of treatment that doctors and nurses caring for him felt was doing him more harm than good.
We need to find better ways to avoid cases of disagreement from coming to court. There is an important role for mediation to help parents and doctors where they have reached an impasse.
We also need a fair, expedient way of resolving disputes. This would mean that patients can access early experimental treatment if there is a reasonable chance that it would not cause significant harm. It would also mean that futile and harmful treatment is not prolonged by a protracted legal process.
I agree with you about how lessons need to learned. Time is very important in such matters and also how doctors communicate with parents. Establishments such as GOSH should have orientation and training given to all staff on a quarterly basis on how to break bad news to parents and be as transparent as possible. Also, if second opinion is requested by the parents from other doctors or hospitals of parents choosing, it should be accommodated, to reassure them there is no mis-diagnosis or treatment options left out.
Some doctors are great at their jobs but bad at communication, so maybe the hospital can learn from this and get communication experts with medical knowledge who can work with the parents and doctors. In red lighted cases parents should get an exclusive communication professional assigned and it is very important that parents’ questions and suggestions are respected instead of taking offence at their suggestions.
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