Hilary Jones and the Sofa of Doom

If you’ve been following developments in the ongoing case of the skeptical blogosphere vs Dr Stanslaw Burzynski then you’ll probably be aware that, yesterday, yet another branch of mainstream media joined the growing list of professional journalistic enterprises that have recently been drawn into, perhaps unwittingly, promoting his dubious and unethical-looking cancer treatments:

ITV’s Daybreak programme brought on a girl with cancer, Chiane Cloete, and her father to talk about how they were raising £130,000 to send the five year old to Burzynski. Dr Hilary Jones, the programmes resident doctor, was there on the sofa to discuss the issues.

The segment started promisingly with one of the presenters saying how Burzynski was “controversial” and had been tried for fraud, and how the treatments ‘were not recognised by the US authorities.

Jones was explicitly challenged over the ‘question marks’ regarding sending someone to this clinic in the US. His response was shocking,

The treatment that Dr Burzynski is offering is very experimental. It is pioneering research, and pioneers in medicine tend to get a rough ride to begin with.

This is a simple distortion. Burzynski cannot be described as a ‘pioneer’. He has been treating people in this way for over thirty years. He is using an approach that other investigators have explored and found unsatisfactory. He is also using a ragbag of conventional chemo drugs in a haphazard way. So, whilst, ‘to begin with’ you might expect some harsh criticism. But after decades of being unable to provide decent results from your ‘experiment’ you might start to expect quite a lot more than a ‘rough ride’.

Jones is playing straight the Burzynski advertising spiel, described so well by oncologist David Gorsky, as a ‘cult of personality’ where Burzynski is a “brave maverick doctor”.

On paper, Jones is rather more than just a run of the mill ‘sofa doc’.

His official title at Daybreak is actually ‘Health Editor’, which implies that he has direct editorial input, if not a significant degree of editorial control over the health-related content that finds it way on to the programme.

Nevertheless, it should be remembered that Jones, who’s media career took off in 1989 when he becme TV-AM’s sofa doc in residence, is nothing more than a general practitioner – and a part-time GP at that, due to his fairly extensive media commitments – and was, therefore, operating outside his own field of expertise in offering any kind of opinion on the treatments offered by the Burzynski clinic. In such situations, clinicians are, as I see it, subject to a range of implicit ethical duties which require them to should reflect careful on their own limitations in the face of what is known about general public perceptions of the position and status they enjoy by virture of sporting the title ‘Doctor’. The psychology of authority and obedience has been extensively studied since the 1950’s, most famously in Stanley Milgram’s classic obedience experiment, and almost 50 years on from that particular experiment, clinicians have long since passed the point at which they could claim ignorance of both the benefits and pitfalls that come with their perceived position and status. e.g. therapeutic contact*, the ‘white coat effect’** and ‘white coat syndrome’***.

*Therapeutic contact – the mere fact of having contact with a doctor can generate a significant placebo effect in patients, i.e. patients often feel better simply for having seen a doctor, regardless of any treatment actually offered.

**White Coat Effect – the mere fact of wearing a white coat, particularly when coupled with formal attire, i.e a business suit, has been shown to inspire confidence in patients which adds to the general air of competence, trust and authority that doctors typically enjoy. This can be something of a two-edged sword, however, as this can sometimes cause trust to be misplaced and cause patients to unwilling to challenge or question the authority of the person wearing the white coat even if they come to feel that something is wrong about either the person, or the manner in which they’re being treated.

***White Coat Syndrome (also called white coat hypertension) – the tendency for some patients – in some studies as much of 20% – to experience significant symptoms of anxiety, including elevated blood pressure when visiting a doctor. Recent research shows that this contributes to the overdiagnosis of chronic hypertension with the result that some patients are unnecessarily prescribed medication to lower their blood pressure when this is not needed.

Doctors operating in the public eye, and particularly in the mainstream media, need to exercise particular care when offering their opinions on any medical issues, but particularly on matters which fall outside their field of medical expertise, so as to avoid giving viewers the impression that they actively endorsing or promoting particular treatments.

Adopting an appropriate degree of caution is particularly important when dealing with conditions for which multiple options are available or when new treatments become available. In medicine, new does not always mean better – its increasingly the case that new drugs treatments are coming on stream not because they necessarily offer greater efficacy than other, well-established treatments. Some do, but only for under specific circumstances, i.e. a new drug may not offer an significant benefits to the majority of patients with a particular, but it may offer superior performance with a specific sub-group of those patients, or it may just give rise to a lesser risk of certain side effects, but not others. What works well for some patients may not work anything like as well for others and this is something that sofa doctors, and others, do need to emphasise when commenting, in particular, on newly approved treatments if they’re not to unnecessarily create problems for doctors* working at the sharp end of medicine. As Kent Bottles MD, a former Chief Medical Officer of Iowa Health System, rightly notes:

The digital age has had a deep and likely permanent effect on the patient-physician relationship. I can’t tell you how many times I’ve had physicians beg me to provide them with a way to stop their patients from Googling their symptoms and diagnosing themselves before their first office visit and much to their chagrin, my answer is always the same, “You can’t stop them. Get over it.”

The internet acts as an enormous and easily accessible virtual research library for patients, granting them access on the one hand to quality, data-driven information and personal perspectives that can provide tremendous value and on the other hand to information that is no better than old-fashioned quackery.

It should go without saying that what goes for properly licensed treatments is doubly important which dealing with treatments that are being prescribed off-label or which are still, at least on paper, at an experimental stage, and this become even more important, as has happened in the case of the Burzynski Clinic, serious questions have been raised about both the clinics medical and ethical practices.

In this context, Jones’ sole response – to date – to criticism of his comments during the Daybreak piece is particularly disappointing.

Pioneering does not mean success. Just new territory explored. Made this clear on Daybreak today in an emotional story!

In Burzynski’s case, the use of ‘pioneering’ is, to say the least, highly questionable – he’s had thirty years, so far, to produce credible evidence in support of his claims of efficacy and produced nothing much of note beyond the occasional case series or individual case report.

Pioneering may not mean success but it is nevertheless a term that many people associate with success. After all, how often does the media pay any significant attention to those scientific ‘pioneers’ whose explorations result in abject failure for the simple reason that they were barking up the wrong tree right from the outset.

Come to think of it, if merely being seen to be ‘exploring new territory’ is enough to score a five minute on the Daybreak Sofa then I’ve got an outline for a brand new NVQ in Unicorn Taming that I could do with promoting, so when do I get my five minute slot on the sofa?

If all the only issue here was the lack of evidence for efficacy that, arguably, one could perhaps give Jones and others in the MSM a bit of pass on this issue. After all, Burzynski’s antineoplaston treatments do pass the most basic test of scientific plausibility, i.e. he is administering a treatment which ostensibly has an active ingredient, and at least some of his trials do relate to rare cancers where it is difficult to recruit enough patients to make for a decent phase III trial.

But in this case, most of the red flags against Burzynski’s operation relate not to the lack of evidence, although this is significant issue, but rather to serious ethical questions; the manner in which he charges people to participate in his ‘trials’, the fact that he asks for donations to his clinic to be made out to him, personally, and most of all the allegations of serious ethical shortcoming and misconduct contained in both the unresolved FDA warning about the activities of his clinic’s Institutional Review Board and the Texas Medical Board’s detailed complaint.

Taken together these amount to much more than just a pioneer getting a bit of rough ride from the medical establishment – t0 a medical practitioner these should really add up to a big flashing neon warning sign.

So why, again, has Burzynski got himself yet another easy ride from the mainstream media?

Sadly, again, there seems to be grounds for questioning the objectivity of the person responsible for the coverage afforded to the clinic as the Quackometer notes in passing:

Jones goes on to explain how one of his friends is currently attending the clinic and is ‘very impressed with what goes on there. And we need to keep an open mind. It’s unfortunate it costs so much money, but pioneering treatment so often does.’

Remember, Jones – if his official title has any real meaning – is not just a presenter or a hired ‘expert’, he’s actually Daybreak’s Health Editor, so unless that’s nothing more than an honorary title, Jones has at least some editorial responsibility for the health-related content which makes it onto the programme and the manner and context in which its presented.

He would, therefore, have had the option of acknowledging that his personal association with a current Burzynski’s patient could give rise to a conflict of interest and have taken the sensible option of recusing himself from his usual seat on the sofa by bringing in another doctor, preferably an oncologist, to comment on the story. Given a reasonably amount of notice, I dare say that Cancer Research UK could easily have put someone forward to fill the Jones-sized gap on the sofa, although – of course – the presentational gloss put on the story by the presence of a doctor would, in all likelihood, have turned out rather differently to what actually appeared on screen.

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  • They even contacted CRUK at least twice, and were told in no uncertain terms that there were serious concerns about Burzynski’s practices and the nature of the treatment regimes.

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  • Proof indeed, if proof were needed, that V doctors is just a media title rather than a job title – despite any qualifications (or lack of) the media – tor may have!

    Sad that he is promoting what seems to be untested and “dodgy” practice in the US though!