Heroes Not Zombies

I had a letter published in the BMJ today. Here’s the text –

What exactly does it mean to say that a treatment produces a decline in “all cause mortality by 21%” in a group of patients aged 80 and over? How long did the treatment postpone deaths from “all causes?” A month? A year? Forever? Use of all cause mortality without a time frame stops researchers and readers asking what the treated group end up dying from. By focusing too narrowly we fail to clarify the true consequences of taking a particular treatment.

I wrote this in response to an Editorial about the treatment of elderly patients with high blood pressure. Somewhat astonishingly the article claimed a study had shown that treating over 80 year olds with antihypertensives not only reduced their chances of having a heart attack or a stroke but produced a reduction in mortality “from all causes” by 21%.

That just cannot be true……..not without qualification. And the qualification is the time period under study. The author of the editorial made no mention of the time period. Mortality remains 100%. Everybody, but everybody, dies. If we effectively reduce the chances of dying from one particular kind of disease, then before we make an informed choice to do what will achieve that, don’t we need to know what we’re MORE likely to die from instead? In fact, it’s not just a matter of death, it’s a matter of life. With an increasing emphasis from biomedical medicine to take drugs for life for a healthier life we desperately need some good whole of life research to show what the impact these interventions have on not just the kinds of deaths such people experience, but the kinds of lives they experience too.

There is a terrible tendency still in Medicine to think in too small pieces. We need the bigger picture.

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Well, well, well. I bet you thought incense might smell good, it might contribute to a feeling of well-being partly through its symbolic ritual use, and partly through some kind of behavioural training, where the smell triggers previously experienced relaxation.

It transpires, however, that frankincense contains some psychoactive chemicals. The resin from the Boswellia plant “activates poorly understood ion channels in the brain to alleviate anxiety or depression”. OK, so this is one of those strange pieces of research conducted on mice, but the researchers claim they may have identified a whole new class of antidepressant and anxiolytic drugs.

I always find myself a bit torn over these kinds of findings. First of all, it’s certainly interesting to read about new discoveries which may help ameliorate human suffering, and it’s also interesting to hear scientists describe potential mechanisms which explain known phenomena, but there’s something a little disturbing too. It’s that reduction of something to its component parts that always makes me uneasy. Even if the incense contains chemicals which can be shown to act on specific parts of the brain, to extract that component not just from the incense but from the whole experience of which incense burning is just a part, and turn it into a marketable product, feels somewhat diminishing.

Oh well, I suppose there’s no need to do an either/or with this one. If ritual and meditative practice involving the burning of incense increases well-being and a new drug or two can be developed to treat patients who are suffering from anxiety and depression, then who says someone can’t avail themselves of both solutions together?

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I’ve just read Patient-centered Interviewing. An Evidence-based Method, by Dr Robert C Smith (ISBN-13 978-0-7817-3279-6). This is one of the best medical textbooks I’ve ever read. I really hope that even in medical schools where the teachers haven’t even heard of this approach, that they will be teaching something very, very similar.

The premise of this book is very simple, and it is that the doctor-patient interview is at the heart of all medical practice. Unlike sick plants or animals, human beings are able to reflect on their own inner experience and to convey that experience using language. These latter qualities make medical practice different from other sciences and crafts. One of the first doctors to make this so very clear was the great George Engel, who proposed, back in the late 1970s, that we move from a biomedical model of human health, to a biopsychosocial one. It is this understanding which underpins “patient-centered interviewing”.

The subtitle of the book is also striking, however, “An evidence-based method”. Much is made of “evidence” these days, and it is arguable that the great ideals of Sackett and his colleagues for “Evidence Based Medicine” has become distorted at the hands of both managers who want to control finances and the practice of doctors, and those who have a narrowly materialistic view of the world, who only value what can be objectively measured. This book, however, takes meets that issue head on by presenting a truly evidence-based approach to the commonest medical procedure on the planet, the one which the average American physician carries out between 140,000 and 160,000 times in his or her working life – the interview.

The patient-physician relationship is the center of medicine. Relationships are central to medical practice…..At the core of any therapeutic relationship is the feeling that an individual can safely expose his or her vulnerability and that he or she is genuinely cared for. These qualities are not merely a matter of having a good bedside manner or of being nice. They have actually been associated with outcomes of care…….The core skill of relationship-building is empathy, which is an accurate recognition and acceptance of another’s emotional state.

Scientific methods usually involve the concept of data. As Smith says,

Although uniquely private and subjective, symptoms and concerns are the primary data – the hard data of the science of medicine – and clinicians and students can enhance their scientific value by good interviewing. These human data lead to most diagnoses and determine most treatments. By “human data”, I mean information that the patient communicates either in words of by nonverbal, but uniquely human, ways, such as a frown. These data are found in no other domain.

He makes what he terms the “humanistic argument” which is that we should “hear and understand our patients in a way that validates them as human beings rather than as objects of study” He points out that this leads to increased patient autonomy which in turn helps them to communicate more clearly what they are actually experiencing and, when it comes to treatment, are much more likely to follow through in their own interests. The biomedical model has produced a doctor-centered approach to interviews – the aim is for the doctor to establish the physical diagnosis – so, the doctor asks lots of questions and the patient is expected to give short, focussed answers. Studies of this method have shown that in over two thirds of interviews, the patient does not manage to complete their opening statement of concerns, being interrupted, on average, 18 seconds into their account. Smith is not derogatory about the doctor-centered approach and recognises its value in establishing urgency, clear physical diagnoses, and treatment plans. However, he argues, it often goes wrong because it fails to allow the doctor to comprehend the patient’s personal concerns and, in particular, the psychosocial contexts of their symptoms. This book lays out a method for a medical interview which begins with a patient-centered approach then moves to a doctor-centered one, concluding with a comprehensive, balanced summary of what has been understood through both approaches together. Crucially, he argues that a solely doctor-centered approach is unscientific because it produces biased data about the patient which is not so reliable and not so valid.

The patient-centered interview has five steps

1. Welcoming the patient, introducing yourself, making them comfortable.

2. Capturing both the patient’s and the doctor’s agendae.

3. Facilitating the narrative by using open-ended questions to explore the presenting complaint

4. Developing the personal story and the emotional story through relationship-building skills of emotion-seeking and emotion-handling.

5. Summary and transition to doctor-centered part of interview

I particularly like his little mnemonic of NURS for emotion-handling skills –

N = Naming – saying what the emotion is – “sad”, or “frustrated”, or whatever

U = Understanding – accepting and validating the emotion

R = Respecting – emphasising the positive elements of the patient’s coping

S = Supporting – offering support and partnership to work to bring about improvement

In Appendix B, Smith has included George Engel’s Foreword to the First Edition – which is a short essay worth buying the book for! In it, Engel explains how he developed the concept of the biopsychosocial approach. He quotes Heisenberg – “What we observe is not nature itself but nature exposed to our method of questioning”

Physicist Heisenberg’s dictum exemplifies a fundamental distinction between 17th- and 20th-centure scientific thinking, the latter of which is derived from such conceptual developments as evolution, relativity, quantum mechanics, general systems theory, far-from-equilibrium thermodynamics, and, more recently, chaos and complexity theory. Loosely speaking, we are applying biomedical and biopsychosocial as labels to contrast the two positions. Actually, what Heisenberg enunciates is what clinicians have known from time immemorial – namely, that the answers you get from a patient depend on the questions you pose and how you do. More broadly, it exposes the fallacy of the 17th-century natural science position that what scientists discover exists entirely external to and independent of themselves. In fact, rather than simply examing or observing something “out there”, scientists devise mental constructs of their experiences with the observed as a means of characterising their understanding of its properties and behaviour. This change in perspective began in physics with relativity theory, which required acknowledgement that the location of the observer cannot be ignored relative to what is being observed. The rediscovery of the obvious occurred in that transformation – namely, that science itself is a human activity. The lesson is that humanness and human phenomena cannot be excluded from science.

I find this book very timely. It might be over 30 years since Engel showed how the practice of medicine should change, and in that time both systems approaches, chaos and complexity theories and discoveries should have transformed our understanding of both health and disease. But we are only at a beginning, and the dominant viewpoint is still the 17th-century mechanistic one. Medicine needs to catch up with some of the new findings from science. Evidence, it turns out, is produced within the complex web which stretches from the subjective to the cosmological.

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I see a lot of patients with the diagnosis of “Chronic Fatigue Syndrome” or “ME”. I probably see a lot of them because most the health service doesn’t quite know what to do with them and, like most patients who come to Glasgow Homeopathic Hospital, everything else they’ve been prescribed hasn’t worked for them.

However, it’s a hugely contentious illness. Some people don’t even believe it exists. Others dismiss it as a psychological problem at best and a frank psychiatric problem at worst. Why is that? Well, the key reason is there isn’t a test for it. The biomedical model of illness recognises problems with objective, measurable “abnormalities” – preferably in some tissue somewhere. It’s actually a rather old-fashioned way of thinking about illness – as if it’s an entity which can be observed, measured, then expelled or conquered; an entity which is some kind of alien presence in the human body. Modern, complexity science has shown us that illness is about maladaptation or malfunction somewhere within the complex, and that measurable, objective pathologies are more often the results not the causes of illness. Beware the doctor who names your illness with the word “syndrome” attached – chronic fatigue syndrome, irritable bowel syndrome, irritable bladder syndrome, premenstrual syndrome, idiopathic urticarial syndrome – if it’s called a syndrome, you can be pretty sure medical science doesn’t really understand it.

If there’s nothing measurable, the physicalists tend to prefer to conclude “there’s nothing wrong”. But when a person is incapacitated by pain, fatigue and other symptoms there is certainly something wrong! To assume that must be a mental problem is very wrong-headed and often ostracises and stigmatises the sufferer.

For those who can’t quite manage to believe the stories patients tell, there is some hope. Scientists claim to have identified seven genetic types of ME. Each type (genetic pattern) seems to be related to a particular pattern of ME symptoms –

Type one had the worst anxiety and depression levels, along with poor sleep and high pain levels. Type two was characterised by significant post-exercise fatigue and joint and muscle pains, while type three was the mildest form of the disease. The research identified type four as linked to moderate levels of body pain and sleep problems, with type five having stomach complaints and the most marked muscle weakness. Type six was specifically connected to fatigue, and type seven had the most severe symptoms including pain, swollen glands and headaches. Type four and type six were the most common forms of the condition.

I think it’s a shame that “tests” are considered more reliable indicators of illness than patients’ narratives, but I do think if these patterns are confirmed, and IF (big if here), that can be turned into a test, then maybe some patients with one of these syndromes will at last be taken seriously.

However, the fact that the researchers have identified six different types confirms a suspicion I have. Most “syndromes” are at best a mixed bag, and, at worst, a kind of dumping ground for a wide range of disorders which happen to share some common features. I don’t think we’ll ever find a “thing” or an “entity” called “chronic fatigue syndrome”. However, we might find a whole set of disorders which currently sit under the same label.

One paper I read a while back about disorders like chronic fatigue, fibromyalgia and irritable bowel syndrome demonstrated the amount of overlap which existed between these illnesses and posited the idea that underlying all these disorders is a more fundamental problem – a dysfunction of the complex adaptive system. This is the explanation I understand best – these disorders seem to be disorders of the whole organism. They aren’t disorders of bits of people, they are disorders of the way the organism functions as a whole complex system.

By coincidence, today, the Guardian published a first person account of chronic fatigue syndrome. Have a read. It’s a clearly written account and it highlights many of the common things patients say about their illness. I know some people will read that account and dismiss it in a way they would not dismiss a patient’s account of cancer. And that’s just one of the problems these patients have to face. In the hierarchy of diseases, ones without abnormal test results rank pretty low! That strikes me as neither rational, nor reasonable.

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Today’s BMJ carries three articles about the placebo effect.

Firstly, in an Editorial by Spiegel and Harrington, they discuss a paper published by Ted Kaptchuk and colleagues where patients with Irritable Bowel Syndrome were randomised into three groups – those who were simply observed, those who were given sham acupuncture, and those who were given sham acupuncture with an enhanced doctor-patient relationship. 3% of the first group got good improvements, 20% of the procedure alone group an 37% of the “augmented intervention group”. As the authors point out,

the doctor-patient relationship in the sham acupuncture only group sounds like a caricature of procedure based medicine practised under strict time limitations:the practitioners explained that this was “a scientific study” and they had been instructed not to talk about it with patients.

and

Clearly the group with the greatest relief of symptoms was the one that received not only sham acupuncture but 45 minutes of quality contact with a clinician. This contact involved questions about the patient’s symptoms and beliefs about them, a “warm, friendly manner,” empathy, and communication of confidence and positive expectations

This is a powerful argument for practising medicine with care and attention. As the authors say –

Perhaps the ratcheting down of the time that doctors spend with patients and our modern overemphasis on drugs and procedures is “penny wise and pound foolish.” Patients might respond better to real as well as placebo interventions if they were associated with a good doctor-patient relationship. Although the increased time and concern may enhance the effects of the placebo, it also changes the context of associations with the treatment—the doctor may enhance the effect of the sham needle, but the needle also becomes a reminder of the enriched relationship.

Here’s their “take home message”

We treat patients in a social and psychophysiological context that can either improve or, alas, worsen outcome. The meanings and expectations created by the interactions of doctors and patients matter physically, not just subjectively.

Human beings cannot be reduced to mere physical components. We are thinking, feeling, meaning-seeking creatures. Health care should be founded on that understanding.

Then, in a reflective article, Pittrof and Rubenstein, consider the ethics of using placebo. They make the point that randomised clinical trials of drugs vs placebo show real effects in the placebo groups –

Published evidence only applies to patients if they have similar characteristics to patients in the study population. Even if this is the case, their response can rarely be accurately predicted. This is one of the problems with evidence based medicine: often its application to the individual is under less than ideal conditions. However, where the study shows that placebo results in a response, when compared with baseline, then that is precisely what the study shows. It is possible to state with confidence that, were the conditions of treatment to be replicated as in the study, the patient would have a statistical likelihood of responding to the placebo, just as we can say that the patient is statistically likely to respond to the active intervention. There is thus a response whose cause is debatable but the response is genuine. On strictly scientific grounds no deception would be involved in referring to this response as an evidence base.

They also point out that full disclosure of information to patients should include a discussion of potential harms –

For example, when advising a patient about treatment for mild to moderate depression clinicians might explain that use of SSRIs may be associated with a higher risk of suicide attempts and that about 80% of the benefits of SSRIs might be attributable to a placebo effect.

and go on to say

we have seen many risk averse patients who would happily accept reduced benefits for much reduced risks.

In other words, if you were told that a treatment had a chance of helping but hardly any chance of harming you, would you choose it first over a treatment that had a greater chance of doing both – helping and harming?

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The Royal College of Nursing in the UK has published shocking results of a survey of its members. They asked nurses about their experience of patients being treated with dignity in hospitals.

In total, 81% of those quizzed said they sometimes or always left their workplace feeling distressed or upset because they had not been able to give patients the kind of dignified care that they should. And 86% said dignity should be a higher priority.

This is quite stunning. Over eighty per cent of nurses claiming this means that not only are patients routinely NOT treated with dignity while they are in hospital but that most nurses are aware that this is a problem. One nurse said this –

“Patients seem to be becoming numbers not people. I am having to fight against what the system wants in order to provide dignified care to my patients.”

There is something seriously wrong at the heart of the NHS – staff need to speak up and express their concerns loudly and clearly. A health service is for the treatment of people – people at their most vulnerable. Its’ priorities should be PEOPLE – patients and staff – not those other artificially created targets and priorities, set so often by people who have no involvement in day to day care of patients.

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There’s an area of the brain known as the striatum. This particular area is affected by certain diseases (Parkinsons Disease for example). One of the odd things that happens sometimes when patients are treated with drugs for Parkinsons Disease, is that they can develop strange behaviours in relation to money – compulsive gambling for example.

Some recent studies using fMRI scans, have shown how this area of the brain (the striatum) becomes active when people received either monetary or social rewards

By directly contrasting the brain activities of the same subjects in relation to the delivery of social and monetary rewards, our results clearly show that social approval shares the same neural basis as monetary rewards, thus providing strong support for the idea of a ‘common neural currency’ of reward,” concluded the researchers.

Our findings indicate that the social reward of a good reputation in the eyes of others is processed in an anatomically and functionally similar manner to monetary rewards

The researchers point out that social status affects well-being, morbidity and even survival. They cite an old study conducted on civil servants in England which showed that the lower the employee in the hierarchy, the more likely he or she would develop heart disease.

How others see us, and how that results in our status within society is linked to our neuronal responses to rewards and punishments so intimately, and our nervous system is so linked to our immune system, and our endocrine (hormone) system, that it can actually be a life or death issue.

This shows why it’s important to understand a person, and a person within his or her social networks if we really want to promote health and deal with disease. Simply lowering blood pressure, or cholesterol levels with drugs, is just not enough.

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TED has a great short video of a scientist called Christopher deCharms explaining some of the possibilities of functional brain scans – “fMRI”s.

This is a fascinating technology – looks like a brain scan but in colour. The active areas of the brain “light up” in bright colours which allows us to map functions, including thoughts and feelings. This is letting us develop new levels of understanding about how the brain works.

I’ve seen this sort of technology explained before but what especially excited me about this short talk is the demonstration of its use as a type of biofeedback. You will see an example of a patient with chronic pain interacting with the scan to actually increase the release of the brain’s natural painkillers (endorphins) and reduce his pain.

The potential, only hinted at here, is of technologies which will allow us to access natural ways of dealing with our own illnesses.

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I’m reading Clay Shirky’s “Here Comes Everybody” (and, oh, how I’m enjoying it!). Quite early in the book he says this –

….in the words of the physicist Philip Anderson, that “more is different”. Writing in Science magazine in 1972, Anderson noted that aggregations of anything from atoms to people exhibit complex behaviour that cannot be predicted by observing the component parts. Chemistry isn’t just applied physics – you cannot understand all the properties of water from studying its constituent atoms in isolation.

How true! And imagine how that applies even more so to the complexity of biological organisms. You really cannot understand a human being by only studying his or her component parts. One day, health care will catch up with that simple insight!

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