An excerpt from my latest column for the New York Times on the contrasting cases of Charlie Gard and Noel Conway:
Usually, a decision about a child’s best interests involves two alternative futures. Is he better off with his mother or father after a divorce? Is it in his interests to stay with parents who may be having difficulties, or to be taken into care?
In Charlie Gard’s case, though, the choice is between a possible future and a definite non-future. There is no future after death, and if life support is ended, Charlie will have no interest to debate.
It is more than six months since the courts first heard the case. A reasonable decision, one that acknowledges the complexities, might have been for the court to have accepted at the start that Charlie could receive treatment for a set period (say, three or six months). This would have permitted the treatment to be assessed, while all parties could have agreed that if the treatment did not succeed, the life support would be turned off. We would have known by now whether Charlie did possess an alternative future or whether his interest does lie in death.
In Charlie’s case, the judges decided that it is in his interest to die even with a possibility of treatment. Noel Conway, in contrast, wants to be allowed to die in dignity, but the law will not permit it. His motor neuron disease is incurable, and he is not expected to live beyond 12 months. His condition is painful, and will become more so. He wants doctors to be able to give him a lethal injection when he decides that it is time to end his life. Under British law, it would be a criminal offense for a doctor to do so.
Read the full article in the New York Times.
The painting is ‘The Judgment of Solomon by José de Ribera.
Fascinating article and some very interesting comparisons.
The difference is between how we perceive the life of a very young child and that of an adult. In the UK we have very sentimental attitude to babies and small children and this is expressed in the way that people respond to this type of dilemma. Interestingly there is little or no interest in the lives of children like Charlie if they live; the care he will receive will be poor or non-existent and this will decline as he gets older. The care he receives will depend very much on where he lives in the UK and the capacity of the parents to make huge personal self sacrifices ( carer, relationships, money) and fight relentlessly for their child. The plight of disabled children in the UK is rarely discussed and they are considered socially irrelevant. The situation for adults is different insomuch as an adult life is perceived as being of greater value, there are usually far more services for adults than children and far more emphasis both politically and legally on care for adults in the UK. Hence an adult cannot be allowed to control their own death as you have to want to live, an adults life has meaning and worth, both socially and in law. A child’s life is not worth investing in they only become relevant in death.
Bear in mind that, even if the treatment were every bit as successful as they hope, the improvement would be minor at best. The treatment cannot reverse the severe brain damage. Charlie would still spend the rest of his life lying on a hospital bed being kept alive by a ventilator. There is no prospect of the treatment meaning he could ever get up and walk around. Thus, even if the treatment were successful, you would then still be faced with the decision as to whether to switch off the machines that are keeping Charlie alive. Further, the doctors are of the opinion that he is in on-going pain (and are medicating him with morphine for that reason).
That’s why the court decided that the treatment is not in his interests, it’s not that the likelihood of success is too low, it’s that even were it successful the modest improvement would not make sufficient difference.
Mr. Malik, your article states one of the arguments against Charlie’s fate is that he should be able to die with dignity. Charlie is an infant and completely dependent upon others. One can not have dignity if never known dignity. The surgery mentioned is said to “experimental”. Not intending to make Charlie a lab rat but experiments must be performed, documented, learned from to be proven. If this argument has been going on for 6 months, and there is known irreversible brain damage, when did the damage occur? Were the courts arguing while this baby’s brain was deteriorating? Continuing the argument will certainly not help that situation.
I am a medical officer from Australia with experience on the palliative care team. Granted, I am only a resident, but I have some experience with these matters.
First of all, Charlie Gard cannot be cured with our current medical technology, and the possibility of him being cured within his short life-time is very, very, VERY remote. Any cure would have to correct the mitochondrial DNA within most of his cells – billions upon billions of cells. We do not have the technology to do this, and we will not have the technology to do this for the conceivable future. His treatment in the US is unproven, at best – even the proponent of this treatment admits that it will, at best, offer only a very slight improvement. His parents seem to be in denial about his condition – which is understandable, all parents want to hang onto hope for as long as possible – but denial is still denial and hope doesn’t change outcomes alone. He has suffered neurological injury and has lost his vision – his parents dispute this, but paediatricians are very good at assessing visual acuity in infants and their conclusion is that he is blind.
Having said that – I would let him be taken for this treatment. Will it work? Almost certainly not. Will it even result in any demonstrable benefit? Almost certainly not. Is it a waste of their time and money? Almost certainly yes. However…. sometimes you have to let them pursue this course of action. He doesn’t have long to live anyway, his parents have raised the money and this treatment wouldn’t inflict any additional pain. For the psychological benefit of these parents, you probably should let him be taken. Charlie, in all likelihood, cannot be saved, but the mental state of his parents can be saved – we have to consider the harm inflicted on them.
So what are the downsides to having him travel to the US for treatment? Well, I suppose if he was in pain, then allowing him to remain on life-support may prolong that pain. I have never treated Charlie, I have never met the boy, so I do not know if he is in pain. His parents say that he is not. I cannot comment on this – if he is not in pain (or, if he is comfortable most of the time), then obviously the argument to allow him to travel to the US is strengthened. If he is in pain or distress, then there should be no argument – he should be palliated immediately.
His parents have raised the money for him to travel – I understand that being on life-support in a public hospital costs resources, but if he was taken to the US then he wouldn’t be taking up NHS resources. And resources count – we have a finite supply of resources and we have to ration them – spending resources on futile medical treatment WILL cost the lives of other patients, other kids. But if he’s going to the US, then what’s the issue?
Should his parents accept his almost certain outcome? Yes. Would it be psychologically helpful to them to accept this? Yes. But they’re not going to. You see it in their faces, you hear it in their statements – they will not accept that their child is going to die and in all likelihood, die soon, no matter what they do. If they won’t accept that, then perhaps they should be allowed to take their child to the US – it is the least harmful option, in terms of their mental health at this point.
Of course, as stated above – if Charlie is in pain or distress (and I have no way to know that), then he should be palliated immediately.
Mark has mentioned one of the tough topics hitherto avoided, namely the diversion of resources, but since in this case we are talking about privately financed treatment it is not for us to tell Charlie’s parents that they are spending their money unwisely.
Let me add this; whatever the outcome of the treatment, something will be learnt from the process, which is a general good. The parents have the right to give consent on Charlie’s behalf.
So at this stage, as I think the original article is suggesting, the onus of proof is on those who would withdraw support, who IMO need to show good reason to fear that Charlie is, meantime, suffering.