There is a need for better ways to avoid cases of disagreement from coming to court , as the parents of terminally ill Charlie Gard accept legal fight for treatment is over, writes Ella Pickover
The Charlie Gard case has reached “its sad and sadly inevitable” conclusion as his parents have ended their legal fight over treatment for their terminally ill baby son.
Dominic Wilkinson, consultant neonatologist and professor of medical ethics at the University of Oxford, said that “deep disputes” between medics and parents about the treatment of a child are “rare”.
When they do occur, the courts play an important role in resolving disputes, but court reviews of cases like Charlie’s are “not ideal”, he added.
He called for better ways to be found to avoid cases of disagreement from reaching the courts.
Prof Wilkinson said: “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.
“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.”
Commenting on the case, Penney Lewis, professor of law and co-director of the Centre of Medical Law and Ethics at King’s College London, said: “Although all parties are now agreed that continued life-sustaining treatment is no longer in Charlie’s best interests, there remains a difference of opinion about whether earlier treatment could have improved Charlie’s quality of life and/or prolonged his life.
“Mr Justice Francis did not make a finding of fact on that issue, perhaps because of Charlie’s parents’ decision to withdraw their application.
“Charlie’s mother has made such a claim in her statement to the court, which the hospital rejects in its most recent statement.
“Relying on the evidence accepted in the earlier court hearings, the hospital reiterates that the seizure-induced brain damage Charlie suffered at the end of last year prevented him from being able to benefit from the proposed treatment.”
Bobbie Farsides, professor of clinical and biomedical ethics at the University of Sussex, added: “The moment has come for us all to step away and leave Charlie and his family to spend precious time together, as his mother has requested.
“This case will no doubt be discussed for many a year, but we must never forget that at its heart is a family tragedy the scale of which few of us can comprehend.”
Jonathan Montgomery, professor of health care law at University College London, said: “The Charlie Gard litigation was brought bravely to an end by his parents.
“They have reviewed the most recent clinical and research evidence with their advisers and concluded that there is no prospect of securing any improvement in his condition. They have always had Charlie’s best interests at heart and they have demonstrated that today.
“The external scrutiny of this tragic situation was often ill-informed. In law medicine and ethics, this was a case about what was best for Charlie. The parents and hospital always agreed on that. They interpreted his situation and the chances that the experimental treatment would help him differently.
“Quite properly, the issues were put before the court for consideration. Now that clearer evidence of damage to Charlie’s brain has become available, and the US expert has actually seen him to assess his condition, it has been possible to reach a common view.
“Charlie and his family deserve our deepest sympathy and some privacy to spend their last precious time together.”
Great Ormond Street Hospital (GOSH) paid tribute to the “bravery” of the decision made by Charlie’s parents.
In a statement, GOSH said: “Over the weekend, they communicated their desire to spend all the time they can with Charlie whilst working with the hospital to formulate the best possible plan for his end-of-life care.
“The agony, desolation and bravery of their decision command GOSH’s utmost respect and humble all who work there.
“Whilst GOSH has striven to work with them throughout, Charlie’s needs have taken priority.”
Charlie’s parents had “fought long and hard for what they have been led to believe was a treatment that would give him a chance to be the Charlie he was before the effects of his illness became evident”.
Throughout, his parents’ hopes “have been sustained by advice received from overseas”.
The statement said that, “devastatingly”, information obtained since July 13 “gives no cause for optimism”, but rather “confirms that while NBT (nucleoside treatment) may well assist others in the future, it cannot and could not have assisted Charlie”.
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