Friday, 28 September 2012

What is truth, what is folly, and what is deceit?




At the weekend, I read with dismay Ben Goldacre's excellent article on the gaming of research results by the pharmaceutical companies (http://goo.gl/LzNHh). I have known for a while that the desire to help patients stood in conflict with the financial bottom line, and I even knew that on occasions, drug companies suppressed results that they did not like, or failed to report on negative trials.

I cut my medical teeth at the time when we started using selective COX2 inhibitors for pain, only to find out that the efficacy data had only been published up to 6 months, as the data up to 12 months showed excess mortality. These drugs have now all but fallen out of use, which is right on the one hand (their incorporation into routine practice was based on flawed data) but a shame on the other hand - there were patients, particularly with rheumatalogical diseases who now have no access to medications that they actually found useful.

Ben Goldacre reminded me of this experience. But his effect on me went much further: he made me question how many times I have prescribed patients medications which I thought would be of use to patients, because the published papers showed benefit. What, however, I have learned is that for many of the medications I use, for every positive trial, there may well be a number of trials that showed no benefit.

Have I therefore been guilty of quackery? By today's standards, my decisions have all been justified, but in the future, when I look back at the actions I used to take, or the medicines I used to use, what will I think? I suspect there will be a number of medications that I use now that I will view with either embarassment or mirth.

I began with mirth when I was reading a beautifully written article in the New England Journal the other day, looking back at 200 years of therapies described and debated in the journals pages.

Blood letting, the therapeutic use of tabacco and trying to shock the body back into health are approaches to healing that we rarely sign up for today. But they made sense in the context of the medical knowledge of the time. In just the same way that the treatment choices we use today usually make sense in terms of our medical knowledge. Usually, but not always: I don't understand the use of ritalin in ADHD, I don't always understand the healthcare reflex to use anti-pyrexials to suppress fever, which has a biological purpose.

I guess we are quite good at persuading our actions to fit our understanding, rather than vice versa. I imagine we are more persuaded by the times our choices work than when they don't - treatment failure can be understood in other terms: they were too sick, too frail or presented too late.

The rise of empiricism in medicine has not wholly dispelled by the influence of personal experience on medical practice - and perhaps it shouldn't. But there are risks: for example, we know that doctors put too few people on anticoagulants, because of their experiences of dealing with the complications, even though the evidence suggests that the benefits outweigh the risks.

But our own personal experience gives us information that no randomised controlled-trial ever could - namely what it is like to be the patient. With our senses, we can tell what the patient going through, both from the illness and from the treatment. This is crucial - the quality of experience is central to how we practice.

But perhaps our own experience also gives us useful data on how well treatments work. After all, if Ben Goldacre is right, we shouldn't place all of our faith in the numbers we read in the journals. Sometimes, they just can't be trusted.

I don't want to be a cynical practitioner, but perhaps I need to be. Perhaps it's true that we can never truly know, and perhaps it is useful to remind oneself that medical practice is about the person in front of you, and not just the empirical evidence about what works and what doesn't.

I can live with the idea that in the future we will have a better understanding of disease than we do now, but what is difficult to handle, is that for some drugs, the knowledge that they don't work that well has always been known. Failure to share this kind of knowledge amounts to corporate selfishness. In these situations, it is greed and avarice that triumph over kindness and altruism, and that just seems so unnecessary.

Sunday, 9 September 2012

Lengthening the legacy

Watching the Paralympics has been a wonderful experience. For some athletes, their adaptation to their impairment is so good that one has to look hard to figure out what their’s is. For others, you simply have to applaud how well they have coped with huge disabilities.

I have particularly enjoyed the swimming, where the water allows many of the swimmers to find a grace of movement that being on dry land robs them of. I imagine that for many of them, being in the water offers them a true escape from the rigours and trials of the real world. I wonder if it is the only that place that some of them feel unencumbered by disability. I know that most of the swimmers  I have seen can motor through the pool I great deal quicker than I can.

Over the last two weeks, we have immersed ourselves in the Paralympics, and become used to treating the vision of people with all sorts of disabilities and deformities as normal. Many of us perhaps felt some discomfort at the first sight of many of the athletes, but I would be surprised if there are not millions of us who now feel a lot more comfortable with it all than we did before.

And this is one of the great things about the games: it has opened up the reality of disability to many of us who have very little day to day experience of it.

But will it last? Look how quickly we have adapted to it. Will we decondition away from it as quickly again, or will then change sustain itself?

This is perhaps the most telling aspect of the whole paralympian endeavour: we will have to wait and time will tell. But I have a perspective on this, which may well help.

For a long time, I have felt that one of the main problems with the care of the elderly in the UK, is that we are not used to having them in our daily lives. Loneliness, as I have written before, is an affliction of old age, and too many of our elders live in social isolation, which means that when they do interface with society, it is often overwhelming for them, and it is often unfamiliar for the people they are dealing with.

There are periodic reports which bemoan the care of the elderly in both care homes and hospitals, which are usually followed by the same promises to improve training, oversight and standards. If only it were that simple: part of the challenge of ensuring dignity and respect in the care of our elderly involves integrating them into real life. If the elderly are valued and respected in everyday life, then they will be valued and respected when they enter care homes and hospitals. The level of care that the elderly receive in institutions is a reflection of the importance that society in general places upon it.

In a similar vein, there must be a lot of paralympians, and other people with disabilities, who wonder what the future impact of these games will be. If the Paralympics have been a vision of what could be, they perhaps also offer a stark contrast with what real life is actually like for these people. Life at the Olympic park has been an other-worldly vision of accessible living for people with disability, and for many the experience has been bitter sweet: if it can be this good, then why can’t it be this good all the time?

Watching elite sport is compelling: the physical tussle, the skill levels and sometimes the sheer bloody mindedness of the competitors makes it enthralling.. The paralympics is slightly different: many of the people that we have been watching would not have been elite athletes if they did not have disabilities. This has fuelled some scepticism on my part about the value of the Paralympic Games to people not directly involved with them. But these doubts are buried for ever: while the paralympics may not always be about watching the best in the world, they have been a salutary tale in what it means to overcome obstacles, to adapt to change, and a reminder that as a society we are not always very good at dealing with people who are different.

We may not see Paralympic sport on TV for another four years. The risk is that when we switch on to Rio, we will be starting from scratch, and relearning what we learned this year. All of these Paralympians will be re-entering real life next week, and for many of them it will be a good comedown. Perhaps it will make it better and easier if they notice that the peope around them are somehow different, that they make eye contact with them, that they are not uncomfortable being around them, and hopefully, that they are a bit more helpful and inclusive. That part, I guess, is down to each of us.

Sunday, 2 September 2012

The imperative for change

Mark Porter (the new Chair of the BMA council) has been counselling against the impact of rationing on the quality of health care provided by the NHS.

From this article in The Guardian (http://goo.gl/KxvdT), the rub of his argument would seem to centre on the impact that the shrinking of the services offered by the NHS would have on patients, and also the impact of undermining the clinical autonomy of doctors, GPs, in particular.

These two lines of argument may have merit. But they are worthy of deeper scrutiny, as they are built on assumptions that you may well not share.

To take the issue of the range of services and procedures offered by the NHS first, can we make the assumption that everything we offer to patients is worthwhile, cost-effective and necessary? Can we assume that all the tests we order on patients are indicated by their clinical presentation, and that all the referrals made to hospital needed in order to come to a satisfactory resolution of a patient’s spectrum of symptoms?

As doctors, we like to think that we do a good job for all of our patients, and we are quite good at presenting an argument in favour of doing an extra test. Some tests, particularly routine blood tests, become almost a reflex. Furthermore, we are never given a breakdown of the amount of money that we spend as doctors on the tests we order, and we are never expected to correlate our practice with our outcomes.

I definitely agree that if a patient needs a test, appointment or treatment for the condition that they present with, then it should be done. However, we must acknowledge that in a system that has hitherto asked from us no justification for the tests and treatments that we do carry out, there is almost certainly scope for tightening up practice a great deal. I am certain that with a little help, I could offer patients the same level of care and clinical outcomes, and spend less money. Perhaps, even by doing less, my patients would do better, shieded as they would be from the pitfalls of iatrogenesis.

For too long, clinical judgement has been the mask behind which doctors hide in order to justify clinical decisions that have no empirical basis. I acknowledge that for much of what we do, there is no clear evidence base, and we must call upon our collective experience and best understanding of the underlying science to guide what we do. There is often a high level of best intention that guides what we do. I also acknowledge that sometimes, your experience tells you to do something, even if you can’t clearly articulate why. The danger in this situation is that sometimes your gut feeling is the manifestation of your accumulated experience of similar cases, and on other occasions it is the manifestation of habit. Too often, our actions if life, and medicine in particular, are guided by the way we have done things in the past.

Furthermore, in every health service some value judgement needs to be made about the services we offer. Implicit in a nationally funded health service is the utilitarian idea that it will do the most good for the most number of people, but that in striving to achieve such a goal, it will not be able to do everything for everyone.

Over the last few years, it seems as if the focus of health care rationing has been on newer, more expensive therapies, often with marginal benefit - drugs for advanced cancers that improve survival for a few months, or drugs for dementia, that delay disease progression for 6 months. These are emotive situations, at the margins of what medicine can offer, and the whys and wherefores of engaging in expensive, and often toxic, regimens that confer little or no benefit can be difficult discussions to have.

However, the pressure placed on therapies at the fringes is heightened by the spending on traditional mainstream treatments, that have survived too long without being questioned. By saving money on treatments that we have offered on the basis of tradition rather than clinical utility, means that the money runs out before we get to budgeting for newer, more speculative therapies at the forefront of medical science.

A discussion about what should and shouldn’t be offered on the NHS is always divisive and emotive, but it needs to be done, with honesty, transparency, and with clear agreement on what the goals are. How would people feel if they knew that by not offering routine varicose vein stripping, the NHS could invest more in offering more advanced therapies for life-threatening illnesses, for example?

The current reform of the health service is overshadowed by politics, but beneath all of the manoeuvering, there is a real imperative: the future of comprehensive health care is dependent on our ability to spend the money we have more efficiently, and more effectively.

The risk of the current reforms is that healthcare becomes fragmented, restricted and profit driven. The opportunity is that healthcare becomes better coordinated and more effective. I am uncertain as to which way it will go, but that does not dent my certainty that the NHS needs to change.