Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

RCJ-2

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment.

 

Best Interests

The legal decision for Charlie will be based upon an assessment of his best interests. He has a rare genetic disorder affecting his muscles and his brain. He has been on life support since last October and has been progressively deteriorating. A neurologist in the USA has suggested that experimental nucleoside treatment might, in theory, offer some benefit, though it has never previously been tried in this situation.

The central ethical question is whether it would be best to provide the experimental treatment and continue intensive care for Charlie for several months more, or to withdraw treatment and allow him to die. How should we weigh up the risks and benefits of those two alternatives?

We have previously written about this difficult question. In a pair of editorials in the Lancet medical journal, we expressed different points of view. Dominic Wilkinson argued that the proposed course of treatment would do more harm than good. In his view, it is likely that Charlie would experience pain and discomfort from continued treatment; it is also unlikely, given what is known about it, that Charlie would benefit from nucleoside treatment. In contrast, Julian Savulescu argued that it is not clear that continued mechanical ventilation in intensive care is so terrible a life that it would not be worth living. He argued that a slim chance of recovery could be worth taking and that Charlie’s suffering could be avoided with drugs.

Disagreement

One approach to difficult decisions is to seek agreement or consensus. For example, doctors in an intensive care unit might hold a multi-disciplinary meeting to discuss a patient’s treatment, and whether it is worth continuing. If they all agree that treatment isn’t helping, they may then seek to withdraw life support. In the Charlie Gard case, the judges in the Court of Appeal will seek a decision that all of the judges, or at least a majority of the judges, feel is correct.

However, in medicine, and perhaps even more so in ethics, there are situations where agreement is not possible, and reasonable people may reach different conclusions. What should we do then?

We have previously written about the importance of recognising and acknowledging dissensus. When reasonable people, with the relevant knowledge and expertise, cannot agree, this points to genuine moral uncertainty about the best course of action. It obviously isn’t clear what the right thing to do is. In our paper in the journal Bioethics, we argued that where there is moral uncertainty, it shouldn’t be up to the doctor or to a group of doctors whether treatment is provided, or stopped – it should be up to the patient. Professional disagreement isn’t necessarily a bad thing. Sometimes it highlights the influence of values in reaching a decision, and that there may be more than one option available.

How would a dissensus approach apply to the Charlie Gard case? In this case, there is disagreement – for example, there is the American neurologist who is prepared to provide treatment. And obviously, we too have disagreed, about the ethical evaluation of best interests. So does that mean that the appeal should be granted, and that experimental treatment should be provided for Charlie Gard?

One important element of the dissensus approach is that it is based on reasonable disagreement. It cannot be that just any view counts. For example, imagine in another case, that parents had found a professional who was prepared to continue life support indefinitely despite clear evidence that a child was suffering, because they believed that crystal healing would lead to complete recovery. In that situation, the view that treatment should be provided/continued appears clearly unreasonable.

A central issue for the Court of Appeal will be whether the view of the US neurologist represents a reasonable or unreasonable assessment of Charlie Gard’s best interests. But how do we work out what is reasonable and what is not?

Here are two factors that they might take into account. First, a ‘reasonable’ view has to be one that is based on, and sensitive to the right kinds of reason. One of the expert witnesses in the original court case commented that “in the United States, provided there is funding, they will try anything.” If the willingness to provide treatment were based purely upon ability to pay and parental request, then that would clearly not be a reasonable view. As a society, we don’t think that parents can impose just any treatment that they like on their child if they can pay for it.

Second, a ‘reasonable’ view has to be based upon the right factual knowledge. In the transcript from the High Court judgement, Justice Francis noted that the US expert had not seen or examined Charlie. The expert himself admitted to the difficulty of making an assessment at a distance “Perhaps, if I were there, I would support it [withdrawal of treatment]. Not seeing the child, not seeing progression, it’s difficult for me to make an assessment.” Our own views about this case are based upon information in the media and in the court transcripts. So while we can make a general assessment of the arguments and relevant factors, we do not have the right knowledge to assess the particular situation for this child.

So here lies a possible way forward. Charlie Gard’s parents need to find one (ideally more than one) health professional who has assessed Charlie’s situation in detail, who would be willing and able to provide the medical treatment (including intensive care) that is requested, and who can convince the court that they are motivated by a sincere, thorough and careful assessment of Charlie’s best interests. That would provide evidence of reasonable disagreement, and, on the basis of our ‘dissensus’ argument, means that the parents’ request should be granted. If they cannot find such an expert, the decision made by the High Court should stand, and treatment should be withdrawn.

Back to Resources

One final point is worth making about the resource implications of these decisions. Agreement or disagreement about benefits and risks is not the only consideration. Even if there are professionals prepared to provide a treatment, sometimes it cannot be provided because it is not affordable within the public health system. The focus in the Charlie Gard legal case has always been on his best interests – not on the question of limited healthcare resources. His parents have raised more than £1.2 million to pay for his treatment in the US. So the decision about nucleoside treatment isn’t on the surface one that turns on limited resources.

However, there is an additional way in which resources are relevant to the Charlie Gard case and others like it. Setting aside the legal costs, the delays in decision-making that have arisen because of this court case have meant that intensive treatment has now continued for many months after the point that doctors felt that it was no longer helping Charlie. Depending on how long it takes to reach a decision now, and on whether there are further appeals, treatment within the public health system may yet continue for weeks or months longer. By preventing other patients from accessing a scarce and highly specialised intensive care unit, that may cause greater harm to other children than the harm to Charlie from continued treatment. Paradoxically, this may provide a strong argument on the basis of limited NHS resources, that the Gard’s request should be granted and Charlie should be allowed to go to America.

 

 

Image – sjiong:  http://www.flickr.com/photos/sjiong/109817932/

 

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14 Responses to Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

  • Chelsea says:

    In my opinion, this isn’t (or shouldn’t be) controversial. The only reason someone other than the parents should be deciding a child’s “best interests” is if the parents have been deemed unable to act in the child’s best interests – in cases of abuse or neglect. It’s not for us to decide if his life is worth living. A friend of mine suffered a traumatic brain injury in a car crash. She cannot speak or walk, but she uses some sign language and communicates via iPad. Is life with limitations worse than death? Is life with pain and suffering worse than death? I would certainly say no, but the simplest answer is: It doesn’t matter. It’s not our call. It’s up to the individual or their proxy. As a parent, the idea that I could have medical care and all funding arranged, only to be told that it’s in my child’s best interest to die in this specific hospital, is TERRIFYING. An overstep of governmental authority.

    • Kirsty Allington says:

      So true as a parent we are under the impression that until the age of 18 we are to make decisions for our children so how come when it comes to such a huge decision as to weather to continue life support the parents loose all rights and even worse are made to feel as if it’s the parents v child in court it makes me sick

    • Elizabeth Spencer says:

      I agree with you. This case is
      1) about governmental authority over a child’s life vs parents wishes
      2)But It is also about whether the State can administer Euthanasia to a child without the parents consent. It is George Orwell’s nightmare scenario.
      3)It is also about the ethics of nucleoside treatment for a British citizen against the government’s medical ethics committee which does not approve of it in Britain as Great Ormand hospital had applied for permission for the same. It is about the approval of that treatment in UK, Charlie guard and his parents have become the scapegoat for that. If they allow it, then the question would be if US allows it, why not UK. GOSH is a hospital associated with UCL and a research facility too and they have an ulterior motive for this media storm and outrage. It is about funding for some PhD candidates from NHS. The judges have to weigh all the options and think logically but also with compassion because a human being and being human is two different things, heart of the matter ( emotionally attached parents who love him) and brain ( emotionally detached doctors who want the greater good) both should be given thought, and not just the logics. LOVE IS ALWAYS WORTH FIGHTING FOR! – that’s a parent’s job, if they don’t do it then they are not parents !

  • K allington says:

    I find it astonishing that in a society that arrests for assisted death /suicide it deems itself ok to go against parents (who have legal rights in theory ) to make their child die because great ormand street want to save face they’ve had a doctor whistle blow them saying they’re incompetent so how is their obvious wrong evwidence even allowed to be a basis for this decision …they say he has no eye contact he doesn’t open his eyes however the gard family have evidence he does , how would you feel if this was your child , what harm is there in letting him go to America his parents have given permission they’ve even stated if he is any pain in any way they will stop they want to help not harm him this case should never have got this far … human rights seem to have been stripped of this family and left a lot of us wondering if there is such a thing !

  • Andrew francis says:

    I am in full agreement with K allington ,we have a judicial system and a government that refuse to allow terminal ill people leave this life with dignity but are willing to end the life of a child that with this treatment albeit un proven might have a positive outcome for poor charlie. Maybe I,m being sceptical but this stinks of doctors unwilling to risk there reputation that they might have been wrong and also the cost to the NHS for on going treatment in the future if the treatment gave little charlie a future of some discription. Shame on the judges,doctors ,NHS and the government .

    • Kirsty Allington says:

      I watched the Charlie gard case in the Supreme Court today I had an overwhelming sense that the decision had already been made before Connie and Chris solicitor had even said anything , the evidence I heard from GOSH was contradictory in itself one minute they say it’s not fair because he is in pain and this is the reason for not continued treatment in America the next they’re stating they have no evidence to prove he is in any pain how can this be good enough evidence to withdraw someone’s life support and kill a child ?? Where the f are the child’s best interests there is it his best interest to live or die be murdered or live GOSH in my opinion are as good as assisting in his death when they should be assisting in his living I’m disgusted in our judicial system and I for one am left scared as a parent as to what rights if any I have over my children should they get ill

  • Sam bennetts says:

    I have to jump in here – when there are new medications there are the people and the animals that try them – so ignore that is the case why can’t CHARLIE be one of the tryers!!! I think this world is appalling especially the governments and courts whom have taken the parental rights of connie and Chris – 2 parents may I add that have done everything a great parent would do. But rather than help them they decide that it’s ok to help murders rapists and terrorists by giving them 3 meals a day, roof over there heads and medical treatment as and when needed. If the laws continue like this and they go ahead with their decision on CHARLIE not only are they murderers but they should then bring back the death penalty for all the animals they keep

  • Are GOSH afraid that Connie and Chris will sue them, if they allow Charlie to have this treatment in The States and it subsequently fails to cure or even improve his condition.
    I’m pretty sure they have nothing to fear on that count.
    On the other hand, they have EVERYTHING TO FEAR if they continue to withold permission……leading either directly or indirectly to their son’s death.
    Not sure how this would pan out, but I know that if this was my child…….I WOULD SERIOUSLY CONSIDER SUEING GOSH FOR WILFUL NEGLIGENCE!
    So many hypotheses in this complicared and extremely distressing case.
    Money isn’ t everything, I know, but if it makes GOSH think twice about putting any other children and their parents through this……it will be more than worthwhile!
    Think on it, GOSH, while you still have time to do something positive (and compassionate) for Charlie and his family.

    • john says:

      Amazing how many people cling to conspiracy theories!! Also, amazing how doctors are bad and fear being wrong when doctors have developed potential treatments for this condition! If this treatment is vital and there is a conspiracy by a hospital then WHY HAS NOT ONE SINGLE AMERICAN DOCTOR SAID THAT THIS IS NEGLIGENCE! Physicians in the USA ARE PAID TO REVIEW CASES and give supportive depositions by law firms, but not one single U.S. physician has said that anything to support that what is happening is negligence.

    • J.P says:

      This is obviously a very tragic case, but there is no possibility of Great Ormond Street being sued for wilful negligence. It is very sad to say, but Charlie will die of his condition, medical therapy is simply not yet at the level where we would be able to do anything for him. This fails one of the tests of negligence (the but for test – harm must have occured which would not have occured but for their actions/lack of). And then it fails the second test which is the Bolam standard, which looks at whether a reasonable body of medical professionals would also have made this decision. The vast majority of medical opinion so far has said he shouldn’t be going to America, and the only doctor who has said he might respond to this therapy has never examined the patient. 2 of the 3 criteria for negligence have not been met, so GOSH know there is no possibility of successful legal action against them. As sad as this situation is, the hospital are acting in the best interests of Charlie.

      This is without any doubt a heartbreaking position for the parents to be in, but Charlie’s doctors are required by law to act in his best interests – and unfortunately in the case of his health, his parents simply do not know best. The outcome that Charlie will die is not what anybody wants, but his doctors are not ignoring a possibility that he might live, that possibility does not exist. They are human beings and want nothing more than for Charlie to live a long healthy life, but that is not the reality of this situation.

  • William says:

    My son is nearly 10 months old. I’d tear out my eyes for him and my heart swells for Charlie’s parents and Charlie himself. We’d do anything for our child.
    “Die with dignity”. I really feel that this is red herring. Charlie is in such a place that dignity is not something he is looking for. He doesn’t understand it. His parents want to fight to the last breath, literally and so they should. Surely “dignity” should be for them to know they exhausted all options.

    The money has been raised and GOSH have concluded that he will die. So, if he is to die, should you not allow him to leave the country and at least die trying?

    • Elizabeth Spencer says:

      I agree, why not let the child’s parent take him out of that hospital into another. why are they not discharging him if he is going to die anyways? Those are very poignant questions. Is It because he is British? What if he was a dual citizenship and they want to take him to another country, if the case was about parents wanting to be near family members and be in the country baby was born in, it would be totally different won’t it? And if parents are paying for it,why not let them take the baby to a different doctor in his home country try would be the argument. Anyways then they won’t be able to do this because it would be wrong to do so as the baby is not a British national and can’t be with held in Britain against his parent’s permission. Maybe they should ‘DEPORT’ Charlie hard to another country, if the parents give up their British citizenship and get a new citizenship from EU or US and just asked to be deported, of course there won’t be any expenses spared to do that ( on a lighter note)

  • Jane says:

    A single American specialist has agreed to try an unproven treatment for a large amount of money on a baby who is dying of an incurable disease. American doctors who make money out of vulnerable people should be demonised rather than suggesting that British specialists are trying to kill a baby. Look at what happened to Michael Jackson – some doctors are just in it for the money and this seems more prevalent in USA.

    • Brian says:

      Without knowing who the American doctor is, I think it’s hard to make judgments about their motivations or abilities. The sort of sycophantic doctors who cater to the rich and famous, such as Michael Jackson, are almost never engaged in medical research, where they are subject to peer review and scrutiny. As for the cost, as far as I understand it, American doctors usually do not have a say in the cost of their services, that’s determined by the insurance companies and the hospital administrators. I’m US-based, so I can’t speak to whether money-grubbing is more prevalent in the US than the UK (sadly, I wouldn’t be surprised if that were the case), but I also know many American doctors, and they all take their Hippocratic Oaths very seriously. I don’t think it’s fair to presume, without knowing more, that this American specialist doesn’t have good intentions.

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