It is dangerous to exclude ethical judgment from medical decisions in which death is knocking at the door of life
In medical cases in which death comes knocking at the door of life, circumstances arise that are not easy to judge and even less easy to resolve. Such cases can be paradigmatic, like that of Charlie Gard. I believe, therefore, that the first thing we must do is to treat all parties with respect and courtesy, especially those who most suffer for being the protagonists of the events, in this instance the sick child and his parents.
From an ethical point of view, there are a number of aspects that should be evaluated. If I forget one, it is not with the intention Great Ormond Street Hospital doctors. Aspects that should be evaluatedof ignoring it, but because of my own limitations.
Great Ormond Street Hospital (NHS) doctors
To begin with, it should be said that Great Ormond Street Hospital (GOSH) is a leading children’s hospital, one of the most prestigious in the United Kingdom, so we should assume that its medical team — and in all likelihood those who took care of Charlie — are highly professional.
Gosh pleaded for Charlie to be taken off the mechanical ventilation
In April this year, when Mr Justice Francis issued his first verdict, the team from the London hospital pleaded for Charlie to be taken off the mechanical ventilation keeping him alive. This meant the immediate death of the child.
Around the same time, a distinguished American doctor, Dr Michio Hirano, offered Charlie’s parents the possibility of treating the baby with a novel therapy, which, it seems, had shown some beneficial effect in another American child who had a disease similar to that of Charlie’s (Child tried by the experimental treatment Charlie Gard’s) In my opinion this offer ethically conditioned the decision taken by the doctors at GOSH. Since Charlie’s risk of death was not imminent and there was hope — albeit little — of improving his health, removing his mechanical ventilator would have been, I believe, an act of euthanasia. This also seemed to be the judge’s understanding, because he gave Charlie more time to live.
In July, after Dr Hirano’s trip to London to evaluate the baby and assess the possibility of instigating his experimental treatment, this situation still further supported the advisability of keeping Charlie alive. However, after the feasibility of using his therapeutic proposal was ruled out by the American neurologist and an unidentified Italian colleague, continuing with the mechanical ventilator seemed like futile therapy, and so could have incurred therapeutic obstinacy. Consequently, I believe that withdrawing the mechanical ventilation, at that time, was an ethically correct medical act.
Why was the treatment offered by Dr Hirano not used in January when it might have been effective?
There is, though, another medical aspect that should be evaluated. Charlie was born on 4th August 2016, and appeared to be a healthy baby, but in December, before Christmas, he began to develop seizures that led doctors to suspect that he had a serious illness. In January, he was diagnosed with a serious genetic disease, characterised by convulsions, encephalopathy and progressive muscle weakness, due to an abnormality in the RRM2B gene. This disease was known to be progressive. It was also known at that time that there was an experimental treatment with nucleosides that had proven useful in a child with a disease similar to Charlie’s. Thus, the question that immediately arises is: why was the treatment offered by Dr Hirano, the American neurologist, not used in January when it might have been effective? Assessing this fact, renowned bioethicist Julian Savulescu said, in a personal note to one of our members, that this behaviour could incur professional negligence. While I do not know if it could be classified as such, the question was raised, which in my opinion would have required a more decisive medical action.
Doctor Michio Hirano
We believe that the attitude of the American doctor was ethically correct, because he offered the parents a treatment that, while experimental, might have some chance of success in the child, albeit small. However, when he later examined Charlie in London and became aware of the child’s brain damage and that the life expectancy that his treatment could offer were not very objective, he abandoned the use of this therapy, in agreement of course with the doctors at the hospital, a decision that I believe to be ethically correct. I also think it positive that Hirano withdrew the offer of his novel therapy, because although it could have helped to increase his social popularity, he gave in to the medical judgement that the case merited. In my view, this decision was also ethically correct.
Charlie’s parents
They complained because Charlie was allowed to deteriorate to the point of no return
On judging the ethical behaviour of Charlie’s parents, Connie Yates and Chris Gard, we should make our respect for their decisions clear at the outset, because I have no doubt that they always acted thinking of the good of their son. Regardless of this, however, the first thing to highlight is Connie and Chris’s profound disagreement about the fact that their son was in hospital for months with no therapeutic remedy applied, while a legal dispute was settled between GOSH and them. Between January and April, when Mr Justice Francis issued his first verdict, the hospital could, in the parents’ opinion, have started treatment; accordingly, they showed their disagreement, and complained because Charlie was allowed to deteriorate to the point of no return, especially as regards his brain and muscle degeneration, without providing treatment that could have improved his health in some way. In their opinion, it would have been essential to provide the American team and the judge, if possible, with all the medical information so that Dr Hirano could have made a more informed evaluation of his nucleoside treatment, and the judge could have taken this into account.
The fact that Charlie’s parents accepted Mr Justice Francis’s final decision to take the child off assisted mechanical ventilation, which is what caused his death, seems a decision that, while it must undoubtedly have been very painful for them, I believe was ethically correct, because prolonging treatment at that time would have been to incur therapeutic obstinacy.
Justice Francis
On 24th July this year, the judge issued the verdict that brought about Charlie’s death. As mentioned, we believe that his decision was ethically correct, because with access to the therapy proposed by Dr Hirano ruled out, Charlie’s life expectancy was very limited and there was no prospect of improvement in the serious condition that he suffered.
A final social aspect
As we know, in light of the possibility of transferring their baby to the United States to be treated by Dr Hirano, Charlie’s parents started a campaign to raise funds due to their own lack of financial resources. As they themselves stated, they managed to raise 1.5 million Euros, so the problem now arises of what to do with this money. In a recent statement (see HERE), they have said that they will use it to help the parents of children who have a disease similar to Charlie’s, a decision that honours them and that from an ethical point of view, could not be more correct.
Conclusion
I will finish as I started. In all cases in which we consider passing judgment on the medical actions that are taken in a terminally ill patient, whether they be child, adult or old person, that decision may be controversial and even difficult to carry out sometimes. What is in no doubt, however, is that it is a time of great suffering, especially for the patient and their relatives, so as individuals and as a society, I believe that our first obligation is to treat them with respect and, I would even say, with great affection. Nevertheless, this is no obstacle for ethical judgment to conform to good medical practice, especially respecting the dignity that the patient deserves.
Justo Aznar
Bioethics Observatory – Institute of Life Sciences
Catholic University of Valencia
One implication of this is that we should not deny the reality of the situation or flee from the inevitable by seeking every possible intervention, however disproportionate.[2]
While every human life is worthy of respect, not every treatment is worth pursuing. This may be
• because it no longer serves its purpose (it is futile),
• or because it is excessively burdensome: the burdens may be physical, psychological, social, or economic,
• or because it promises too little benefit relative to the burdens it entails.[3]
Good reasons and bad
In the case of Charlie Gard, the doctors caring for him believed that he could probably experience pain, but was “unable to react to it in a meaningful way”. [4]
Here, the switch is from “probably” to “unable.”
Their evidence was that “being ventilated, being suctioned, living as Charlie does, are all capable of causing pain”.[] Broad statement but no evidence that Charlie was in pain.
It was said that “even before Charlie began to suffer from seizures on 15th December 2016, the clinical consensus was that his quality of life was so poor that he should not be subject to long term ventilation”.[6]
Yes, on December 15 the decision was made not to do a tracheostomy. Here, that decision was manifest by the statement “he should not be subject to long term ventilation. While this is not stated in black and white, it is verified by the fact that tracheostomy was not done. Tracheostomy would have allowed Charlie to go home. Very likely Charlie could have lived longer which would have followed the desires of Charlie’s parents and would have allowed more time on earth for the possibility of new and better treatment for Charlie.
The statements that ventilation could itself be causing suffering and that it was producing only a poor “quality of life” (i.e. state of health and well-being) together constitute an argument about whether this particular treatment is worthwhile. Others may argue with the conclusion, but this way of reasoning is ethically defensible.
Charlie’s parents way of reasoning is “ethically defensible according to the author,” but it is not ethically defensible according to the desires and wishes of Charlie Gard’s parents.
On the other hand, opinions were also cited in court that seem to refer not to the worthwhileness of treatment but to the worthwhileness of Charlie’s life.
In the High Court, Mr Justice Francis repeatedly stated, with approval, that “Charlie’s parents accept that his present quality of life is one that is not worth sustaining”.[7] Francis J also cited one doctor as saying that the severity of Charlie’s condition was such that “it could be argued that Charlie would derive no benefit from continued life”.[8]
Charlie’s life was worthwhile to Charlie and to Charlie’s parents.
At best, these are muddled ways of referring to the limited benefits of treatment relative to the burdens. At worst, they express a judgement that life with some disabilities is not worth living at all (the life is “not worth sustaining”). This way of reasoning can have dangerous and far reaching implications and should be repudiated firmly.
Modeled is a deception the decision was made that Charlie’s life was not worth living. The treatment that was used four months was not burdensome or dangerous. The decision was made to and Charlie’s life
Another criticism which could be levelled at the way the UK courts approached this case is that they treated Charlie as if he had no parents or as if his parents had already been shown to be acting in a very unreasonable, albeit well-meaning way.
Charlie’s parents were behaving as normal loving parents. The court was wrong in overruling the parents and sentencing Charlie to die.
In a case like this, the first question should not be “What treatment would be in the best interests of Charlie?”, as though making a parental decision on his behalf, but “Are Charlie’s mother and father acting reasonably or at least, not very unreasonably?”
Only after parents have been shown to be acting or seeking to act very unreasonably and exposing their child to a risk of significant harm, albeit with good intentions, should such decisions be taken out of their hands.
The court ruled that non-treatment would be in the “best interest,” not what was best for Charlie. Why was it best for Charlie to be dead?
Flawed reasoning, defensible decisions
There are flaws, therefore, in the way that the courts came to their decisions in the Charlie Gard case, both in negative value judgements made (or cited with apparent approval) on the worthwhileness of Charlie’s life and in a failure to recognize the role and status of his parents.
Nevertheless, the final decisions in this case – to withdraw ventilation and not to seek experimental treatment – are decisions that parents in this situation could reasonably make on behalf of their child.
Charlie Gard’s parents reasonably made the decision that they wished for Charlie to be treated. Further they wished for Charlie to go home go home.
The decisions themselves are morally defensible. The Catholic moral tradition does not oblige the use of medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to their expected outcome.[9]
Charlie Gard was treated with a ventilator. The ventilator was effective, not burdensome, not dangerous, not extraordinary and not disproportionate to their expected outcome.
At some point we will all die, and often we will be undergoing medical treatment before we die, and as the chances of improvement fade and the time remaining grows short, the burdens and side effects of the treatment are a reason to forego intrusive and extraordinary means and to focus on symptom control.
Now the language is “intrusive and extraordinary means.” Suddenly the focus is on symptom control. What is the symptom? Is the symptom, to be alive?
This is true of dying children just as much as dying adults. There is a time to fight and a time to cease from fighting.
Persons, whether a child or an adult is living when labeled “dying.”
“Between ‘alive’ and ‘dead’ there is no room left for a third state in which a man is ‘dying’ or ‘in death’; for, if alive, the time is ‘before death’; if he has ceased to live, the time is ‘after death.’ It is clear, then, that he is never ‘dying’ or ‘in death.’” St. Augustine.
Medical treatment and care is not fighting. Doctors and nurses protect and preserve life.
The staff of the Anscombe Bioethics Centre wish to express our solidarity with Charlie’s parents as they go through this deeply painful time and assure them of our prayers for Charlie and for all those around him.
The Anscombe Bioethics Centre (originally known as the Linacre Centre for Healthcare Ethics) is a Roman Catholic academic institute based in Britain, that engages with the moral questions arising in clinical practice and biomedical research.
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