The parents of terminally-ill baby Charlie Gard have ended their legal challenge to take him to the US for experimental treatment.
Dr Louise Terry, Associate Professor and Reader in Law and Ethics, London South Bank University, and member of the St Christopher’s Hospice Clinical Ethics Committee, said:
“Medical advances since the development of the earliest ventilators and life support systems have enabled many patients and families to hold onto hope of recovery. Often, these hopes are realised but sometimes, even with the current best available scientific and medical advances, including, at times, the use of experimental technologies, a point is reached where nothing more of value to the ill patient can, or should, be offered. At this point, hopes of recovery become reframed into hopes of a gentle and loving passing. Loving parents wish for nothing more than for their child to feel cherished, loved and protected from pain as their spirit slips away peacefully. And this is something that the hospice movement in this country is able to lead the world in.
“Although a ‘normalisation’ of family life might seem desirable, when complex medical technology will continue to be necessary until the decision, finally, is made to turn off life support, trying to provide this within the home is almost certainly for most families and most family homes, an unrealistic hope. The greatest gift a parent can give the child is unconditional love, and sometimes the parent has to accept that they have to be the ones to bear the burdens of conditions that they dislike, in order to provide their child with a gentle, pain-free passing.
“The saddest aspect of the Charlie Gard case has been the raising of false hope, particularly by a doctor who had not examined him. Research into this potential area of treatment will likely now never want for funding. For the rest of us, we have to focus now on what hopes are realistic. Herrestad et al in their pragmatic analysis1 of hope, identified how “a language of loss, voicelessness, helplessness, and resignation is part of the vocabulary of hopelessness.” Charlie’s parents never lost hope and they fought for him. They harnessed the help of millions around the world and refused to be voiceless. Now, however, is a time of resignation and future loss. This is the vocabulary of the hospice movement and, if Charlie’s parents accept their help, the way that his dying is supported until his final breath will be a comfort to them in their loss.”
Dr Giles Birchley, Senior Research Associate in Surgical Innovation and Bioethics, University of Bristol, said:
“The intense media interest has seen Charlie Gard, his parents and his doctors and nurses thrust into the spotlight. Intense debate about the rights of his parents and the expertise of his doctors has followed. Yet we must never forget that the case is about real people who are faced with agonising decisions, and at the heart of the case is a real child who is voiceless and is suffering. Critical care is hugely invasive and – especially when it extends to weeks and months – both physically painful and mentally distressing. Because of this, doctors are understandably reluctant to offer treatment where there is little or no chance of success. We now know that even the slim hopes of success of an experimental treatment being offered by an overseas expert, Professor Hirano, will not help. Lawyers from Great Ormond Street were rightly critical that Professor Hirano, when offering his opinion, had neither examined Charlie nor looked at his medical records, despite these options being available to him for many months. Those making desperately important decisions about life and death require, more than anything, advice that is reasoned and informed. My fear is that some of the advice offered to Charlie’s parents has failed to reach this standard. Charlie’s parents have been, and remain in, a desperately vulnerable position. They will need the ongoing support of their friends and families, as well as the staff at Great Ormond Street. The death of a child is something no parent should experience, and my heart goes out to them, and to Charlie. My hope is that their desire to spend their final hours in private is respected.”
Prof Uta Frith, Emeritus Professor of Cognitive Development, UCL, said:
“Everybody who heard about this tragic case was touched by it deeply, and social media users were able to express their emotions publicly as never before. The sheer numbers alone may have amplified emotions and polarised opinions. In addition, the label ‘going viral’ suggests rapid spread by analogy with biological contagion. As social beings we are built to adapt to rather than resist this phenomenon. I am therefore heartened that Mr Justice Francis yesterday made explicit that the “watching world feels entitled to express opinions, whether or not they are evidence based”. I admire him for steadfastly relying on evidence not opinion.”
Prof. Sian Harding, Director of the BHF Cardiovascular Regenerative Medicine Centre, and Professor of Cardiac Pharmacology, Imperial College, said:
“The outcome of the judgement is much more in line with what we know about mitochondrial diseases of this severity. It is worrying that the doctor who claimed Charlie might have been treated earlier was, according to the GOSH statement, invited to come six months ago, but yet had not examined any of Charlies records by the time he gave evidence in court recently.”
Prof. Julian Savulescu, Director of Uehiro Centre for Practical Ethics, University of Oxford, said:
“At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.
“However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.
“Back in January, there was an option for a trial of treatment that had some chance of success, a world leading doctor willing and able to provide it, and, by April, the funds had been raised to achieve it without public funds. There were also the means to control and minimise Charlie’s suffering. I believe that a limited trial of treatment was in Charlie’s interests back then, given the only alternative for him was death.
“Doctors opposed this because of the low chance of success combined with fears that the extra time in life support would be too painful.
“4 months of the legal process has left us with no trial of treatment, and no chance now for Charlie. Yet Charlie had to go through all the suffering (and more) of being kept alive on life support.
“No-one wanted this outcome. No-one believes this outcome was in Charlie’s best interests. There has got to be a better process. It has been traumatic for all the doctors, who have genuinely had Charlie’s interests at heart, and Connie and Chris, but most of all Charlie.
“It has also raised other issues.
“Charlie would have been the first to receive this treatment and some have said it risked Charlie being used as a guinea pig. Medicine won’t progress without experiment and innovation. Over the years processes have been developed to protect patients and ensure the best scientific results. Double blind placebo controlled trials are the gold standard. I have argued that, for rare and deadly diseases with no existing therapies, it is in the patient’s interests to access potential treatments earlier and without placebo, provided they have a reasonable scientific basis. There is little to lose and much to gain for this group of patients, and the protections that are in place can cause more harm than good for them.
“A second issue is that social media has given power to the people. Over the five court hearings, Trump and the Pope, and thousands of others have weighed in. We have had to have these discussions about how and who should decide on what makes life worth living and what kinds of chances are worth taking.
“The question of who should decide is legitimate. Some people have wrongly concluded that these decisions should only be up to parents, but at the same time it is right that doctors, scientific experts and the Courts should not be considered almighty, beyond question or account.
“How much should the decision–making be left to parents? While most parents want to do the best for their children, parents can abuse their children, or can be radically mistaken. We do need oversight to ensure children are protected.
“If Connie Yates and Chris Gard had requested ongoing intensive care for a herbal treatment with zero scientific evidence or rationale, that would be abuse. But they weren’t. They were asking for a treatment with a clear scientific rationale and some relevant evidence, with the support of a relevantly qualified medical expert.
“There have to be protections. But doctors should not activate these legal mechanisms, or stop parents travelling for medical care for their child, unless there is disagreement between the parents, or they are going to an unsafe place, or they are very confident the parents’ choice is unreasonable. That requires doctors to think ethically, as well as having all the scientific evidence. The problem is not who has the power, it is how it is used and the need for robust, and humble, ethical deliberation.
“Some have seen this as a further attack on ‘experts’, a current hot topic. But this case was more about disputed values than disputed facts. What has been absent, and is absent from society, is a sound secular ethical approach to these life and death issues. I haven’t seen any substantial ethical discussion of the deep ethical issues in this case like what makes a life worth living or what kinds of chance are worth taking. Debate has been shut down in monosyllabic ethical argument: treatment is futile or it is not futile. And we have again closed our eyes to the elephant in the room: resources and justice. The NHS may not be able to afford such experimental treatments for everyone who needs them. We should have had a debate about resources and justice. These are difficult questions but ones that must be addressed openly. It goes beyond accepting the expertise of someone else.
“This has been a clash of medicine, science, politics, ethics and religion. Yes, there is always a clash of values because many people hold different values and weigh facts differently. What matters is that people’s values are reasonable and they don’t seek to impose them on others, or other families. It would have been very reasonable for Charlie’s parents to choose to withdraw treatment; it was also very reasonable to choose a small chance of some improvement. I wouldn’t choose experimental treatment if I were Charlie’s parents but that does not mean they are wrong or unreasonable to do so.
“We need a bit of humility about our moral views about the good life, and about how and when to live. In Charlie’s case, his parents have been accused of prioritising their own interests over Charlie’s in choosing to take their child for experimental treatment that might give him a chance to live. The courts have intervened and stopped them. However it is a reasonable view of Charlie’s interests that his parents held. I hope that there will be a review of the basis of these decisions, and how they are decided in the light of this case.”
Prof. Jonathan Montgomery, Professor of Health Care Law, UCL, 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.”
Prof. Dominic Wilkinson, Consultant Neonatologist and Professor of Medical Ethics, University of Oxford, 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.”
Prof. Penney Lewis, Professor of Law and Co-Director of the Centre of Medical Law and Ethics, 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.”
Prof. Bobbie Farsides, Professor of Clinical and Biomedical Ethics, University of Sussex, said:
“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.”