The Greatest Taboo

Death and ageing are often described as the remaining taboos of our age – twin foes that we will do everything in our power to escape while knowing that they must surely come to us in the end. The current debate on assisted dying, however, leads me to believe there is an even greater taboo that troubles us in our modern, technological world – the question of suffering.

Suffering has defined much of human history, but it is only in the last hundred years that we have made significant inroads into finding ways to tackle it; with the advent of innovations such as vaccination; antibiotics; safe, anaesthetised surgery and effective pain relief, we have made great strides in the relief or prevention of suffering. In so reducing our regular encounters with this old enemy, however, I wonder if we are now less equipped to cope with it when we see it face to face.

Theologians, writers and poets all have a great deal to say about suffering. As Shelley put it:

Most wretched men
Are cradled into poetry by wrong:
They learn in suffering what they teach in song.

In her commentary on the assisted dying debate back in Iona Heath reminds us of the words of the French author Emmanuel Carrère who said:

As a rule…one must live lucidly, experiencing everything that happens, even suffering.

Not all are so romantic. Somerset Maugham, for instance laments:

It is not true that suffering ennobles the character; happiness does that sometimes, but suffering, for the most part, makes men petty and vindictive.

Whatever their conclusions, however, at least these writers have something to say about suffering – something that I fear we have lost the ability to do in modern healthcare. Everything we do in medicine is about the relief of suffering – and rightly so, we should be doing all we can to both prevent and relieve the suffering we encounter; but where we cannot achieve relief, we also seem to lack the narrative to help our patients come to terms with their situation. The inability to deal with the cause of suffering is seen as failure, often responded to with ever more desperate technological attempts to tackle the problem; another tablet that just might work, more chemotherapy, further surgery – the promise of relief preventing any real admission that medicine has run out of answers. As Heath puts it, medicine all too often offers ‘a technological solution to an existential problem.’

That there are calls for assisted dying to be legalised is certainly evidence that the fear of death can be outweighed by the greater fear of suffering. Some argue that palliative medicine is so developed that all suffering in terminal care can be relieved, but while such care can indeed be excellent, this seems arrogant and insulting to those who continue to suffer despite doctors’ best efforts. Not all suffering is related to bodily symptoms – mental anguish and fear can be just as hard to bear, and medicine rarely has the answers to the less physiological burdens we have to carry.

As doctors we have a rich language to call on for the relief of suffering: diagnose; treat; control; palliate; cure and so on, but where is our vocabulary for the suffering which we cannot resolve? Words like endure and persevere are not medical words, and you will rarely hear doctors use them – to tell someone they must simply put up with their distress seems uncaring, and leaves the doctor’s inadequacies too exposed; we would rather skirt around the issue and talk about more treatment. Is it any wonder, then, that some people ask for the ultimate treatment for the relief of suffering – assisted dying?

To hear the plight of someone who wants to choose assisted dying and not to be moved is to have a heart of stone; it is entirely understandable. Yet I have also seen the very best of what it means to be human arise directly from the pit of suffering: remarkable courage; relationships restored as years of unresolved bitterness are finally forced to a head, leading to resolution and forgiveness; great acts of love, sacrifice and kindness. Not all is rosy, of course, and at times illness will only unearth the mire hidden just below the surface, but this is the stuff of life with both its joys and its messiness.

I would like to help my patient’s journey through the suffering they have to endure rather than give them drugs to find a permanent way of escaping it. Do I have the right to tell my patients how much they should suffer? Of course not. Have I suffered enough in my own life to even know what I am talking about? No, I have witnessed a great deal of suffering, but personally only been subject to it in small measures thus far, if someone says therefore I have not earned the right to talk about this then I will not quarrel with them. Do I think suffering is ever justifiable on the grounds that good will come out of it? Certainly not, and I will continue to spend my days trying to relieve it. But I am constantly surprised by the great beauty that can arise from suffering, and I can’t help thinking that if assisted dying becomes legal and routine in this country then we will lose some of our humanity in the process.

The Saatchi Bill – Innovation or Obscuration?

What’s the difference between a quack and a pioneer? And how do we allow the next William Harvey or Edward Jenner to flourish, whilst protecting the public?

These are the questions at the heart of the Medical Innovations Bill, the basis of which is the belief that true innovation is being stifled by the fear doctors have of being sued, and that legislation is required to remove this barrier.

I found myself trying to answer these questions in the consulting room the other day when a patient asked me directly if she could have a syndrome I had never heard of before. She has a multitude of symptoms that I have been unable to explain, and her internet search had led her to the syndrome as a possible explanation for her situation. She was kind enough to give me time to do my own research, and we agreed to meet again to discuss it.

The syndrome in question (which I won’t name for fear of saying anything that could be misconstrued as libel) was unorthodox, but not implausible. It suggested that there could be a hormonal imbalance at tissue-level which was not reflected in abnormal blood tests, and high-level hormone supplementation was required.

But tissue-level biochemistry is still poorly understood. If bacteria in your gut can cause ulcers and crystals in your ear lead to vertigo, then I don’t see why some hereto unknown enzyme problem couldn’t lead to a hormone imbalance – unlikely, but not impossible.

Here, however, is where the theory started to break down into quackery: the proponent of the syndrome did not engage in the process of scientific enquiry, but named the condition after himself, set up a lucrative clinic offering untested (potentially harmful) therapy to patients outside the bounds of a clinical trial, and continues to offer such treatment despite being disciplined by his professional body.

When I made my conclusions about my patient’s diagnosis, explaining the background, thankfully she agreed with me.

So I am left with a simple distinction between true innovators and quacks. The former will be motivated by a desire to discover truth through rigorous scientific enquiry and external peer scrutiny, while the latter will come up with plausible, attractive theories and hurry on with treatments without stopping to examine the effects in an unbiased way

This is why we do not need Saatchi’s Bill, and we should strongly oppose it. A true innovator will not want to implement the Bill, while a maverick doctor may seek to exploit it. Their motivations for doing so may be benign – a desire to offer hope to the patient in front of them, perhaps, or an inability to admit the truth that really nothing more can be done – but the outcome will be the same.

The Bill is meant to encourage innovation where there is a dearth of clinical trials, but in such circumstances a true innovator will not complain about the lack of trials, they will create one.

The Bill seeks to provide safeguards so that proposed treatments are brought before fellow clinicians before being used. A true innovator knows the value of proper scrutiny as afforded by an ethics committee.

The Bill seeks to encourage treatments for patients who have no time to wait for clinical trials, but a true innovator will see the long line of future patients, and not allow decisions to be dominated by the suffering of those immediately before them.

Maybe our Health Secretary and Lord Saatchi should talk to someone like Barry Marshall, who jointly won the 2005 Nobel Prize for Physiology with Robin Warren for establishing the link between H pylori and peptic ulcer disease, and was so obsessed with finding the truth that he infected himself with the bacterium to study its effects – now that was true innovation. I wonder what he would think about the Bill?

The post was originally published by Pulse (free registration required)

Would We Have the Nerve?

It will remain to be seen whether or not the release of 25 year follow-up data from the Canadian National Breast Screening Study will prove to be a game changer, but what if it did? What if its findings – that regular screening mammograms have no impact at all on mortality from breast cancer, and result in harm from an overdiagnosis rate of 22% – were proved to be irrefutably true? What then? Would we have the nerve to act? Could we ever give up the UK screening programme?

There can be no doubt that if the Canadian study were the only research available then mammography could not be recommended – we would conclude that it does more harm than good and be done with it. We should never rely on one study, of course, and other studies have shown routine mammography in a more favourable light. It is, however, the only study of significant size to be undertaken in the modern context of more effective breast cancer treatment and it is not the only time in recent years that mammography has been brought into question. So what if we were to believe its results?

What would happen if the UK National Screening Centre (UKNSC) were to withdraw its support for breast screening? We are used to new programmes being introduced, but not an established one being cancelled; after 35 years of endorsement and public health advice exhorting women to take part in screening, it would be quite an about-face to tell the population that it wasn’t such a good idea after all.

There would be all the mobile screening units for starters – what would we do with them? Replace the x-ray machines with ultrasounds and expand the aortic aneurysm programme? Cut our losses and sell them off to a haulage company? What about all the staff involved in delivering the programme? Or the expertise the NHS has acquired in reading mammograms? There would still be a role for the x-ray in symptomatic women, but there would be huge over-capacity if the screening programme were to be stopped in its tracks. I’m certainly not rushing out to buy shares in a company that makes mammography equipment.

More of an issue, though, is the political challenge that any change in policy would encompass. It is well-known that no matter how compelling the argument might be for closing a hospital, trying to actually do such a thing is usually akin to political suicide – would the same be true for whichever unfortunate cabinet minister was left to announce the cessation of screening mammograms? Would the move be seen as anti-women? What would the pro-screening lobby have to say? There are enough men who are angry about being ‘denied’ a national prostate screening programme despite the evidence that it would do more harm than good. The belief that early is always better, and knowledge is always good are so deeply ingrained that they are often maintained despite any amount of evidence to the contrary.

Any woman who has had to endure the rigours of treatment for a breast cancer picked up on a mammogram can be expected to believe wholeheartedly that the whole process has saved her life – how else could anyone face going through such difficult treatment? What, then, is she to think if she hears of other women being denied the same chance to live? Can we expect everyone to make a clinical assessment of the evidence on such an emotive issue as breast cancer?

Perhaps the biggest hurdle of all, however, will be the NHS Mandate. Enshrined within this document is a drive to bring down five-year cancer survival rates; those figures that are thrown at the NHS from time to time as the UK is told how poorly we compare with the rest of Europe. The best way to keep five-year survival figures low is to concentrate on screening – catch it earlier, survive longer – and not to worry too much about mortality rates. If the Government ever sanctioned the cessation of the breast screening programme we would slip even further down the league tables and the goals of the Mandate would be harder to reach – even if it was better for the health of the nation, this could be too much for those in power to stomach.

I don’t know where the evidence will move from here – more studies perhaps? Another Cochrane review? Perhaps the UKNSC will deliver a verdict. What really matters, though, is whether we could ever act on the findings; if we have been doing the wrong thing for the last 35 years, could we ever find the nerve to change?

This past was originally posted in Pulse magazine (free subscription required)

The Joy of the Irrational

When I returned from the Royal College of GPs Annual Conference recently, my brain was left buzzing with ideas, keynote messages, ambitions, anxieties (quite a few anxieties…) and dreams about the future of General Practice. Oddly enough, though, there was one thought that kept bubbling to the surface in the cognitive soup of my mind – out-competing the words of the many excellent high-profile speakers for my attention – and it came from a 5 minute presentation of a piece of research on the humble mole (the dermatological rather than mammalian variety).

Apart from being an excellent (and award-winning) piece of research, it gave an insight into the peculiar interaction that happens between the doctor and the patient, and the fact that, try as we might to rise above our weaknesses, we remain deeply irrational beings.

The study by Fiona Walter and her team evaluated the effectiveness of a piece of equipment called MoleMate, which is a non-invasive system for evaluating suspicious moles for the possibility of melanoma. The researchers compared the results of using a best-practice 7 point checklist alone, with the use of the 7 point checklist combined with MoleMate. The hypothesis was that the addition of MoleMate would reduce the number of unnecessary referrals by picking up a higher proportion of the significant lesions.

The results of the study in fact showed that MoleMate did not improve the appropriateness of referral, and was actually less efficient than best practice alone, since it resulted in significantly more referrals. So far, so good – let’s not bother to get this particular bit of kit for the practice, well we weren’t planning to anyway so no loss there. What is fascinating about the research, however, is the finding that both the doctor and the patient preferred the MoleMate arm of the research – they found it more reassuring to have the additional guidance of technology, even though the study found the outcome was better without the piece of kit.

I’ve been wrestling with this one ever since. The allure of technology grips many of us, and for some bizarre reason we often prefer to place our trust in the evaluation of a gadget made by fallible humans we can’t see, than the evaluation of the fallible human we can see. The obvious conclusion to this piece of research is to dispense with the machine, and yet we know that using the machine meant that people were more satisfied with their consultation and felt more reassured. If you had MoleMate sitting in the corner of your consulting room, therefore, would you be able to resist the temptation to reach for it from time to time to make your patients happier? It’s bad medicine of course, but then if your patients go away more reassured, is it really so bad?

In this instance I don’t think I could countenance using technology I don’t believe in, but it got me thinking about the things I do in the consultation which may not be so very different. For instance, I usually make a point of examining the head in someone suffering from headache. Except in rare circumstances, such as temporal arteritis, I know that my examination will make no difference to the outcome, but it just feels right to do it. When you have pain somewhere, you expect the doctor to assess where it hurts. I don’t want my patients to leave the consulting room feeling inadequately reassured, thinking to themselves ‘he didn’t even look at my head.’ And yet, if I know that my examination is, in a sense, a sham, as it won’t add anything to my assessment, in what way is this any better than MoleMate? Or, put another way, is MoleMate just a high-tech version of that ancient therapeutic act of doctors – the laying on of hands?

I don’t have the answers. I’m certainly not going to start recommending a new piece of equipment without a sound evidence-base behind it, but I’m strangely uplifted by the results of this study – because it is the unpredictable nature of the way we humans behave that keeps medicine interesting, and the complexity and challenge of communication between the doctor and patient that keeps me motivated.

This post was originally published in Pulse magazine (free registration required)

Antibiotics for Back Pain – Break-through or False Dawn?

The headlines on back pain this week are hard to ignore. The Guardian, not known for its sensationalist health claims, chose:

Antibiotics could cure 40% of chronic back pain patients.

It’s enough to make a GP sit up and take notice – I can only imagine what I might think if I was living with pain that my doctors had long since given up on.

The newspapers have caught up on an article published in the European Spine Journal in February (funny how these things lie quietly in the medical literature and then all the papers find them at once!) The article was the findings of a Danish trial examining the use of antibiotics in the treatment of long-standing low back pain, and the results are certainly promising – with significant improvement in pain in the treatment group versus placebo. There is a good rationale behind why antibiotics might work, as well as MRI scan findings that should help in the selection of patients who could benefit. The study has been very well critiqued here by Neil O’Connell. I would recommend reading his paper, as I don’t think I can better his analysis.

The key question is what the medical establishment now does with the findings – we need to tread very carefully. At the moment this is the result of a single research group in a relatively small study. For all we know this may have been caused by a statistical blip, an unseen bias, or even scientific fraud (I have absolutely no reason to think it is fraud, but we should never be so naive as to not consider this as possible, until findings have been replicated elsewhere). The results certainly justify a large, multi-centre trial to fully evaluate the hypothesis.

The problem is that we already have the technology to evaluate back pain with an MRI scan, and the antibiotics are established and inexpensive drugs. The temptation for doctors to agree to treat their patients with antibiotics ‘to see if it works’ will be very great – especially for patients in whom nothing else is working. We must resist this, as there are two equal and opposite dangers if we do not.

The first is that this turns out to be an erroneous finding, and thousands of patients are unnecessarily investigated, treated and harmed before, years down the line, the hypothesis is finally refuted and practice reverts to normal. The history of medicine is littered with examples of this – from the horrors of frontal lobotomies in the 50’s, to unnecessary tonsillectomies in the 70’s, or the over-use of aspirin in primary prevention of heart disease and stroke as recently as the last decade. It can be quite a task to put the Pandora’s box of over-treatment back where it came from once it has been unleashed.

The second danger is that this really is a break-through. That it is the Helicobacter pylori moment in the treatment of back pain (Helicobacter is the bacterium responsible for the majority of stomach ulcers and its discovery and treatment has revolutionised the management of this condition). If this is so, then we need robust evidence to establish this new way of thinking so that the majority of people can benefit. If treatment starts to become commonplace without evidence then it could remain the territory of private clinics and maverick surgeons who are more focused on pleasing their patients than practicing robustly evidenced medicine. NICE may never approve it, or take several more years to do so than it should, and many patients may miss out in the long run.

So what to do if you have back pain? Well, for now it is best to watch this space with interest. We really do not know at this stage if you would benefit from antibiotics or not. If a clinical trial starts, seriously consider enrolling on it – so that you can play your part in answering what is clearly a pressing clinical question.

To Skype or not to Skype?

If you enjoy reading a blog that packs a health-related punch then you would do well to peruse the offerings presented by Roy Lilley. His posts are always worth a quick look, and frequently an in-depth read. Sometimes I find myself wholeheartedly in his camp, cheering him on, while other articles leave me seething in exasperation that someone could be so quick to cast judgement on something about which I care passionately. When it came to his latest edition, however, I been left sitting firmly on the fence – because, as far as I am aware, the science is insufficient to allow me to know which way to fall.

Mr Lilley’s sprightly 92 year old mother has become the proud owner of an ipad, and she wants to be able to Skype her GP. Her son argues:

It does seem rational, doesn’t it? A reasonable thing to ask? In this day and age, e-mail, Face-Time or Skype, might be a reasonable choice for a patient to transact with the NHS?

Well, is it a reasonable thing to ask or not? In terms of the technology there are logistical problems for sure – getting video equipment into GP surgeries, coordinating Skype calls, preventing the surgery broadband from clogging up and so on – but it is surely not beyond the wit of a GP practice to overcome much of this if the prize is worth the trouble. So what of the prize?

There are clearly potential advantages in using Skype – it is convenient, reduces travel costs and time spent in waiting rooms, and, since doctor and patient can see each other, it gives more information to the doctor than a simple telephone call. A doctor might be able to pick up more non-verbal cues, or diagnose a rash at a glance and save an appointment. Certainly my attempts to get patients to describe their rashes over the telephone are rarely successful.

With all new ideas, however, we also need to consider the potential for harm. We already know that telephone consulting carries unique risks, but these have been well-studied and the benefits clearly outweight the harms – while a proper understanding of the risks involved means that they can be minimised by appropriate training. As far as I am aware (and here I must confess that I have not conducted a systematic search of the literature) there has not been a great deal of study into the potential harms of consulting via Skype in British general practice.

Of course, not all new technology requires a thorough assessment of harms – the NHS Mandate includes the proposal that all GP practices should provide the ability to order prescriptions on-line, and this is clearly a highly beneficial idea that requires only a degree of planning to ensure that it can be developed safely and effectively – indeed, any practice not already providing this service does not require the Mandate to know that they should be putting plans in place to develop it. However, there are good reasons to be concerned about harms from consulting via Skype.

On a philosophical level we should spend some time considering how extensive use of video consulting could change the doctor-patient relationship. Jonathon Tomlinson has written very eloquently about this in his blog and so I won’t expand further here, other than to say that we risk losing something very precious if we take the humanity out of the GP consultation and usurp the centrality of the person with an over-emphasis on the diagnosis.

At a more basic level, however, there is a danger that patient-doctor behaviour could be affected by this new technology in unpredictable ways. Doctors may be falsely reassured by an inadequate hands-off examination, resulting in errors that would not have been made on the telephone alone, so that just as Skype could aid in making a diagnosis, it could also contribute towards a miss-diagnosis. Patients may be more reluctant to book a face-to-face appointment, resulting in a superficial encounter which fails to get to the route of the problem. Employers might refuse to grant time off for a doctor’s appointment, pressurising their employees to remain at their desk and await the Skype call. None of this may happen, or all of it, or there could be other unintended consequences that I have not thought of. The important factor is that harms could happen, and they could be serious. We will only know what will actually happen if we conduct a study.

There are three possible outcomes of a proper analysis of the impact of video consulting in primary care:

  1. It turns out to be safe, but offers little benefit over telephone consulting – in which case we should leave it to the private clinics to offer as a publicity gimmick and not waste NHS time and resources rolling it out.
  2. It carries significant risk over and above telephone consulting, without adequate compensatory benefit – in which case the whole idea should be shelved.
  3. It has significant benefits which outweigh any harms – which should lead to widespread adoption across primary care.

My own hypothesis is that video consulting may have some value in secondary care, but will fall comfortably into the gimmick category within a GP setting, and that there will be little demand from patients – an outcome bourne out by the experience of Dr Thom, a private clinic which specialises in remote healthcare – the telephone, after all, is hard to beat for convenience and ease of use.

What really matters, however, is that whatever your personal hypothesis (and I’m talking to Mr Lilley here), you should be wary of recommending policy changes before we have a clear, scientific understanding of the outcomes that would result from this particular new technology.

Quick Post – Mixed fortunes for new Prostate Cancer Treatments

Doctors have always had a particular weakness for new gadgets and flashy technology, and surgeons more than most. The prospect of being able to send Proton Beams deep into a tumour, or smash a cancer into submission with High-Intensity Ultrasound is truly heady stuff to a urologist. All the better, therefore, that we have clinical trials to help work out if these new techniques actually work before getting too carried away with these exciting toys.

There have been two new studies published recently, with mixed fortunes emerging for the latest technological assault on prostate cancer. Proton beam therapy, disappointingly, has not fared well. This treatment is not much used in the UK, but a large study in America has shown that it is no better than conventional treatment, and may even have a higher incidence of complications. Side effects – in particular impotency and incontinence – are frequent, and a major problem with both radical surgery and brachytherapy, the standard treatment for early prostate cancer. Ultrasound treatment does seem to offer early promise in this regard, and the widely reported results of treatment in 42 men has shown an encouragingly low incidence of serious side effects. Far more work is needed, however, as this was a small study with only 12 months follow-up.

We also have to note that these men had early cancer – which means they were picked up through screening – and the major question remains – should these men be treated at all? I have blogged on this before, and we must remember that it is hard for a new treatment to have fewer side effects than no treatment at all.

Can Technology Turn the Tide of Family Breakdown?

When I am talking to someone who is recovering from depression, I often ask the question “If you start to go downhill, who will notice first?” All too often, this is greeted by a thoughtful pause, and the realisation that the people who are nearby probably wouldn’t notice, and the people who would notice just aren’t nearby. Maybe the closest family tie is with a brother who lives in North London, or a sister who has just moved to Edinburgh, or parents who live on the other side of the world. The extended family has long since dispersed, and even the nuclear family is struggling to cope in our modern world.

We can engage in a round of nostalgic finger wagging and berate families for succumbing to the temptation to live apart, or maybe we can adapt to the opportunities of our modern world and find new ways of staying in touch and supporting those who are close to us. If better transport systems and social mobility mean we no longer live cheek by jowl with any number of siblings, aunts and cousins, maybe better communication systems mean we can find new ways of overcoming the vast distances that stand between us and those we care about. And so I was very interested to hear about a couple of new and innovative websites Moodscope and Mood Tracker. These sites offer a novel way of monitoring your mood, and also give you the option of sharing this information with other people – maybe now you can help those who want to notice to be close enough to notice.

The principle behind these sites is that if you are concerned about your mood it makes sense to monitor it regularly – just as someone trying to lose weight would jump on the scales every morning, why not assess your mood at the start of every day?  It’s a very simple suggestion, but it makes sense. Users of the sites often find that just pausing each morning to ask themselves how they are feeling can bring a greater sense of control, and this in itself can bring an improvement in mood. The sites record your past mood, which allows you to spot patterns. Maybe you can start to recognise that your mood often dips for a day or two, but always comes up again, or that it always dips when you don’t have enough sleep, or maybe it would help to spot that things are really not going well and you need to seek help.

The main difference between the sites is the way mood is assessed. Mood Tracker uses a simple self-assessment of mood, irritability and anxiety – easy and quick to do, but quite a blunt tool that could give the same answers time after time. Moodscope has a more sophisticated test which uses 20 questions to achieve an overall mood score. It has a fun way of asking the questions, involving spinning and turning cards on the screen in order to give an answer. This takes more time to complete and so may not suit everyone – although it is still only a couple of minutes and the extra time needed might actually be beneficial if your mood is low, as it gives an opportunity to stop and think about how you are really feeling.

An optional extra on both sites is to involve one or more friends to support you and receive your scores via e-mail. While this might not be for everyone, knowing that someone is journeying with you can be a lift in itself. If your scores are falling you can have the person you want to notice be the person who will notice – even if they are thousands of miles away. And perhaps, with an e-mail, or a text, or even a Skype, those miles won’t seem quite so long and recovery from depression won’t seem quite so lonely.

So, can technology turn the tide of family breakdown? No, I’m sure it’s much more complicated than that – but perhaps if we use it right we can make a ripple or two in the other direction.