Summary

With the much publicised Charlie Gard case still fresh in people's minds, the issue of when it is in someone's best interests to be taken abroad for experimental treatment which is not available in the UK is very much a 'hot topic'.

This issue has come up again in a different case. In this instance the patient (D), who lacks capacity due to a traumatic brain injury, was to travel to Serbia for experimental stem cell treatment, to which the Court provisionally agreed. It was deemed to be in the patient's best interests to travel to Serbia for this experimental treatment, largely on the basis that 'Physical health and safety can sometimes be bought at too high a price in happiness and emotional welfare'. Here, we look at the key points of the case and its practical impact.

What was the case about?

The patient in question sustained a traumatic brain injury which has left him with significant physical disabilities and global cognitive impairment and, although able to express views about his treatment, he was assessed as lacking capacity due to only a limited understanding of what the treatment would entail and his ability to weigh up its pros and cons.

The patient's mother - who is described in the judgment as 'utterly devoted' to getting the best care - has researched treatment options, and strongly believes that stem cell treatment might help. However, the clinic they have identified to provide this is in Serbia, outside of the UK.

The Court of Protection reviewed the available evidence and in particular:

  • There was little in the way of published research to support stem cell treatment having any clinical benefit for traumatic brain injury;
  • The expert evidence highlighted numerous risks (including risk of developing cancer and other illnesses linked with the stem cell treatment);
  • The doctor in Serbia who was proposing to carry out the treatment was unable to provide clear evidence that the treatment had led to some improvement in around 80% of cases he had dealt with.

However, the evidence was that the patient himself really wanted to try the treatment, even if it might not work. Speaking to the judge the patient told him, "I just want to be normal" and a comment he had reportedly made to his mother seemed to strike a particular chord with the Judge – "Mum, if I don't try, I'll never know".

What did the Court decide?

Ultimately, the patient's expressed wishes/overall emotional welfare won out over the medical evidence and the Court gave provisional agreement for the stem cell therapy in Serbia to go ahead (subject to various steps first being taken to ascertain more information about the treatment plan and prospects of success).

The Judge acknowledged that this had not been an easy decision and he accepted that there was a lack of evidence to show any medically proven benefit. However, applying the usual 'balance sheet' approach of listing the advantages and disadvantages of either having or not having the treatment, and applying appropriate weight to each factor, the Judge concluded that the balance fell in favour of the patient's expressed wish to go ahead and try the treatment.

In the Judge's view - regardless of the treatment outcome - there could be a psychological benefit to D arising out of knowing that his wishes have been respected and that what he sees as a potential treatment option has at least been tried. If he were to be denied the opportunity to have stem cell treatment on the grounds that this was the safer option, this could be a case of safety being bought at too high a price, in terms of his happiness and emotional welfare.

Impact

Whilst the Charlie Gard case might have left some with the impression of a court system averse to experimental treatments of unproven medical benefit, this is not necessarily the case because the concept of 'best interests' is rooted in looking at the bigger picture; including a person's emotional wellbeing.

'The emphasis must be on sensible risk appraisal, not striving to avoid all risk, whatever the price... What good is making someone safer if it merely makes them miserable?'