Charlie Gard and the harms of hope

The tragic story of Charlie Gard is now coming to an end, and with it some key information has been released by Great Ormond Street Children’s Hospital (GOSH), where Charlie is being treated.

The above tweet describes the most recent statement released by GOSH and its legal team, and the paragraph of interest runs as follows:

When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.

For context, the Professor in question is the American doctor who had offered Charlie’s family the chance for nucleoside therapy. It’s not surprising that the medical community of Twitter has been disheartened by this report. Without knowing any more, it looks an awful lot like this doctor misled the parents of a very sick child, without even examining the child, with the promise of a treatment that a litany of other experts had already concluded was not going to work (the other paragraphs of the statement explain this). It is not unreasonable to say that without this doctor’s input, this saga would have ended in January, potentially sparing Charlie and his family 6 months of suffering.

Throughout this case, the general argument in favour of letting Charlie go to the US has been “why not give him a chance?”. The GOSH statement suggests strongly that this chance never existed in the first place. The whole case rested on the idea of hope, which now looks like false hope.

The value of hope is an issue that has popped up in health economics recently. Cost-effectiveness analysis is increasingly being used in the US, and as happens in every country, health economists there are grappling with their own questions around societal values, and what costs and effects should be included in their analysis. At the recent International Health Economics Association Congress, which I attended, the cheerleaders of this work, the Institute for Clinical and Economic Review (ICER), presented their approach to this, along with a value framework that outlines what they think cost-effectiveness in the US should consider.

They included the value of hope as a benefit.

In my last blog post I outlined the difficulties of deciding where to draw that line at what should be counted as an effect. Should we only consider health itself, or should we also consider wider benefits, for example the ability to go back to work? In the UK we generally don’t consider non-health benefits, but other countries do it differently. Sweden includes wider benefits such as productivity outcomes.

The issue with this, as I described before, is that in a health system with a budget (which all health systems have, whether they admit it or not) you are then trading these other benefits against health, because the money to pay for them would otherwise pay for other treatments. How many years of life would you give up to go back to work? How many years of life would you give up so someone else can go back to work?

Some of these non-health benefits may genuinely be worth giving up actual health for. I’ve not seen much evidence that they are, but that doesn’t mean it’s not out there. Hope, though? Merely increasing the uncertainty surrounding whether a miracle cure may exist? That’s a messy one.

First up, from an analysis point of view if you include hope as a benefit then you have to subtract it as more evidence becomes available. If that 1 in 1000 chance becomes zero, because a new test is developed that means doctors can identify the 1, then you have to count that against the new test, because it is taking away hope from 999 other patients.

But beyond that, I think what the Charlie Gard case shows is that hope can have real, harmful consequences. Hope is only a positive before treatment has started, and failed. Once it begins to fail, hope is eviscerated, and all that remains are the costs; economic, emotional, and possibly physical, if suffering is prolonged needlessly or there are side effects from treatment.

Of course choice is important in all of this. Most of us would cling to hope if given the chance, and understandably so. But this is about the broader point of whether society should value hope. In other words, would it have been better for Charlie Gard and his parents if they had never had that hope at all? Or should it be something we actively count as a benefit in decision making, even when the final health outcome will be the same.

From where we are sitting now, with the benefit of hindsight, I wonder if many parents would choose to have kept fighting for a futile treatment on the basis of hope. I wonder if the costs of the past 6 months would have been worth it.

 
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