Heroes Not Zombies

The dominant concept of disease is still a lesional one. The first task for a doctor is to diagnose. This should mean “to understand” or “to explain” but the way doctors are educated and trained gives priority to pathology ie to disease within cells, tissues or organs. Almost all the technologies used to “diagnose” aim to illuminate and/or identify a physical lesion. So, when you present to your doctor with some disturbing symptoms, he or she will set off on a hunt for the physical lesion. If they find a pathology, they will use their knowledge and experience to settle upon a conclusion that your symptoms are the manifestation of that pathology. Treatments offered will be chosen according to this understanding. The intention of the treatment is to either remove the pathology or to act against the symptoms which the pathology is assumed to be producing.

But what happens if there is no physical lesion? If the “diagnosis” from either the story and the physical examination, or from the “normal” findings produced by the investigative instruments, excludes (or, more realistically, fails to identify) any pathology, any physical lesion? Well, the default is to say the problem lies in the mind. In other words, there are two options – either a physical cause, or a psychological/psychiatric one.

This model is creaking at the seams. Increasingly we are demonstrating how diseases do not fall into one of those two neat compartments. The symptoms experienced, and the sense a patient makes of those symptoms, usually involves both the body and the mind.

If you’ve ever had pain which lasts for some time, you’ll know how that affects every aspect of your life. If part of your body doesn’t work because of damage to nerve fibres, then living with the resulting paralysis affects every aspect of your life. The simplistic view is that if the physical cause is treated the psychological distress will just go away. Life actually isn’t that simple!

The other direction is explored through psychosomatic medicine – the physical manifestion of the diseases of the mind. If you are anxious, or depressed, then your physical body is affected – breathlessness, pain, diarrhoea, palpitations etc etc.

As we improve our understanding of human beings, we discover that this old “cartesian” model is not as helpful as we used to think. Problems which have a focus in the body affect the mind and vice versa. In fact the body and the mind are so intricately interconnected that it would be rare for a problem to be so isolated into one of our “compartments”!

I’ve written before about some of the interesting work on the links between symptoms and diseases – see the posts about Meaning-full Disease and Why Do People Get Ill?

It’s also true that as human beings are intensely social beings, that sometimes the problem lies not within a single being but within a relationship, a family, or a community – see the work of Eric Cassell who has illuminated a lot of this by focusing on the patient’s “suffering”; and the work of Wilkinson on inequality.

However, let me postulate another explanation – maybe sometimes the problem lies in the “system”. Thanks to the explanatory model of the complex adaptive system, we now see that an organism can dysfunction, not because single parts of it have gone wrong but because the way everything works together has become damaged or disordered. This is still a new idea in medicine. There aren’t any scientific tests to help us “diagnose” such a problem. But look at all those chronic disorders where no lesions are found and there is really not a reasonable psychological explanation either. The fact that many people are ill without lesions and without psychological disorders shows us that there is something else going on which we have so far failed to grasp. This should undermine those who make psychological diagnoses in everyone who has normal “tests”! It’s intensely frustrating for an ill person to not be taken seriously or to be told that something is “all in your head”.

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The BMJ this week reported an enormous increase in the amount of prescribed drugs being taken by people over 60 years old in England and Wales. In 1997, this group of the population were prescribed just over 22 items a year. 10 years on they are receiving just over 42 items a year. Overall, there has been a 50% increase in the average numbers of items prescribed per person. As you might expect, costs have shot up accordingly, doubling in the same decade – from £4.4billion in 1997 to £8.4billion in 2007. Statins in particular have gone up from under 5 million prescriptions in 1997 to 45 million last year.

Steve Field, chairman of the Royal College of General Practitioners, said that the increase in the number of prescriptions was probably due to a combination of a rising number of elderly people, more people with chronic conditions, and greater use of drugs used in preventive treatment.

The second report which caused me concern was a study by a Professor of Sociology who presented a paper at the American Sociological Association. He has demonstrated that the current licensing method which relies on trials of a drug against placebo, however,

Systematic reviews indicate that one in seven new drugs is superior to existing drugs, but two in every seven new drugs result in side effects serious enough for action by the U.S. Food and Drug Administration (FDA), including black box warnings, adverse reaction warnings, or even withdrawal of the drug.

So, he concludes, a new drug has twice as much chance of doing you harm than giving you greater benefit than the existing drugs.

Harms from prescribed medication are no small thing –

According to a 1999 report for the Institute of Medicine, adverse drug reactions (ADRs) are the fourth leading cause of death in the United States and more than two million serious reactions occur every year.

These two reports disturb me for two reasons. One is because they make me wonder just where medicine is going. Are we defining health as what people who take drugs experience? What’s normal any more? How successful are our societies where such large proportions of the population are having to swallow so many pills? This can’t be the best way to address the issue of Public or personal Health! Secondly, because of the extent to which the balance is tipping, not in favour of safer, more effective treatments, but, apparently in favour of more dangerous, and marginally (at best) more effective treatments.

Surely we need to think more seriously about how to maintain health and how to help people with chronic illnesses without reversion to drugs?

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It’s funny how a document or an idea can float around for many years then re-emerge with new relevance much later. In reading about “Health 2.0” in the BMJ recently I followed the links to the Demos organisation and downloaded their excellent document “The Talking Cure“. One of the references listed in that document was a publication by the Royal Pharmaceutical Society of Great Britain, published back in 1997, tackling the issue of “non-compliance” – where patients don’t actually take their medicines as they’ve been prescribed. This is a fascinating document. The conclusion it reaches is that it’s time to stop thinking about “compliance” and start thinking about “concordance”.

Here’s their definition of “compliance” –

The patient presents with a significant medical problem for which there is a potentially helpful treatment. What the doctor or other health care professional brings to the situation – scientific evidence and technical expertise – is classed as the solution. What the patient brings – ‘health beliefs’ based on such qualities as culture, personality, family tradition and experience – is classed by clinicians as the impediment to the solution. The only sensible way out of this difficulty would appear to be to bring the patient’s response to the doctor’s diagnosis and proposed treatment, as far as possible into line with what medical science suggests.

and, here’s their definition of “concordance”

The clinical encounter is concerned with two sets of contrasted but equally cogent health beliefs – that of the patient and that of the doctor. The task of the patient is to convey her or his health beliefs to the doctor; and of the doctor, to enable this to happen. The task of the doctor or other prescriber is to convey his or her (professionally informed) health beliefs to the patient; and of the patient, to entertain these. The intention is to assist the patient to make as informed a choice as possible about the diagnosis and treatment, about benefit and risk and to take full part in a therapeutic alliance. Although reciprocal, this is an alliance in which the most important determinations are agreed to be those that are made by the patient.

This is such an important shift in thinking.

The full report considers what this means for “Evidence Based Medicine” (EBM). It does represent a challenge but it doesn’t undermine EBM principles. EBM is basically clinical epidemiology. It’s a statistical technique which focuses on the results of experiments conducted on groups of volunteers. It helps us to understand the potential of an intervention. However, the reality of an intervention has to be patient based. A painkiller might be “proven” in EBM terms, but might totally fail to relieve a particular patient’s pain. In fact, that’s partly the reason there are so many “proven” drugs which claim to do the same thing – they might have demonstrated their potential to something but only the patient can decide whether or not they “work” for them.

This is encouraging. For too long patients’ experiences have been dismissed as “anecdotal” and, frankly, irrelevant. That thinking has to change.

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There’s a revolution beginning in the practice of medicine. It’s about a shift in power which will change the way doctors work. It’s quite fascinating to see the early shoots appearing and it’s way too early to be able to say exactly how this is going to develop.

One of the change factors is what is being termed “Health 2.0”. This term is being used in different ways but it mainly refers to the use of social networking tools. This is one of them – a blog. Blogs allow anybody to publish anything of interest. Some blogs are just websites trying to sell something, and some are so highly personal that they are only of interest to readers who already know the blog author. But the most exciting blogs are those which allow sharing of experiences, views, information through tools like links, tags, comments, blogrolls and so on. Social networking sites like Facebook, Myspace, Bebo and so on are other ways of sharing experiences views and information. I could go on, but I won’t! There are more and more tools emerging all the time. What do they have in common? They are about sharing. They allow people to access the stories of others’ experiences.

What’s this got to do with health?

Well, the traditional doctor-patient relationship is based on a doctor as the expert who knows best and a patient who will passively accept the doctor’s recommendations, whether that be a prescription or an operation or whatever. The power sits with the doctor and the patient often feels intimidated or unheard. The new way is patient-centred, another term which means different things to different people, but which usually includes giving a higher prioirty to the patient’s issues and wishes.

There are two elements to this “Health 2.0” change – doctor-patient communication and patient-patient communication. The US Institute of Medicine’s report “Crossing the Quality Chasm” suggested that care be seen in future as less “event based” and more “relationship based”. It recommended that doctors and other members of health care teams be more accessible to patients and that care becomes an ongoing process rather than conceived of as something that only happens in “consultations” or “office visits” or “admissions”. An article about these changes was published in the BMJ last week. It highlighted the need to shift towards what it called “conversations”, giving one example of moving the patient record from being a doctor-held property to being a document co-created and shared between doctor and patient –

An example of this conversation is that created when general practitioners share records with their patients by posting them on the web. It is being pioneered by a group of English GPs in the patient access electronic records collaborative, using the EMIS information system for primary care. GPs will post up the patient records on a password protected site and patients and their GP will be able to access them.

This sharing of information is a major driver in the shift of power. Not only will personal information no longer be the sole preserve of the authorities (think also of Donald Berwick’s speech to the NHS where his first recommendation for improvement was this – “Put the patient at the absolute centre of your system of care—In its most authentic form, this rule feels very risky to both professionals and managers, especially at first. It means the active presence of patients, families, and communities in the design, management, assessment, and improvement of care. It means total transparency. It means that patients have their own medical records and that restricted visiting hours are eliminated. It means, “Nothing about me without me.”) but more and more information is being shared. The BMJ article, for example, highlights the development of the NHS Choices supersite http://www.nhs.uk and facilities like Healthspace and Medpedia as examples of the much wider publication of health related information.

The second element is collaboration and sharing between individuals. These new tools allow people with similar problems to not only share their experiences but also to discuss what they’ve personally found helpful or harmful.

Demos, a UK-based thinktank has recently published an excellent document entitled “The Talking Cure” which encourages people to think about these changes. In that document they state –

“If we are serious about engaging patients in their own care, we need to recognise that current structures of choice inhibit responsibility.” Choice “requires a genuine negotiation, a conversation between patient and doctor, and a shift in logic.”

and

Truly personalised healthcare allows patients to articulate their experiences, express their values, set their priorities, be aware of their options, exercise their preferences and be educated in managing their health. This means an end to paternalism

The Demos document very interestingly compares the mechanics and hairdressers as models of ways in which doctors work – yes, really!

Today, the typical motorist may have a rough idea of what is wrong with his or her car but leaves it to the mechanic to make an exact diagnosis, define a successful outcome, and prescribe the procedures needed. A visit to the hairdresser on the other hand begins with a conversation to elucidate what the client wants done (and whether it is practical) and may continue throughout the visit. At the end, the client assesses the outcome.

I find all this very exciting. It’s going to shift health care into collaborative relationships which focus on the needs, experiences and wishes of individual patients. This represents a huge challenge to the command and control, expert knows best, model of passive patients who are told what to do by others who claim to know better than the patient what will make their life better.

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I read a report today by Professor Lipshutz about coenzymeQ10. I don’t know if you’ve heard about it but it’s a chemical which is necessary for the normal functioning of every cell of your body. Given its biological importance, some people have wondered if you can improve function, and therefore health, by giving additional amounts to people as some kind of supplement. The problem with the current supplements is two fold – first coenzymeQ10 has been expensive to make (that’s changed now as the Chinese have developed a cheaper method), and, second, there’s a problem of getting it absorbed into the body. The supplements on the market now tend to deliver only about 10 – 15% of the enzyme. The report I read today is from an American researcher who believes he has come up with a method to tackle this latter problem by using nanotechnology to make coenzymeQ10 easier to deliver effectively to the human body.

OK, so far, this sounds like a good story. If this stuff in needed and giving more of it makes people better then something that improves its availability must just be a good thing. But the question of whether or not taking supplements of coenzymeQ10 will improve your health, either in general, or specifically in relation to particular diseases, hasn’t been clearly answered yet. I agree with the logic expressed by Dr Langsjoen who wrote a very clear summary here. He said –

Modern medicine seems to be based on an “attack strategy”, a philosophy of treatment formed in response to the discovery of antibiotics and the development of surgical/anesthetic techniques. Disease is viewed as something that can be attacked selectively – with antibiotics, chemotherapy, or surgery – assuming no harm to the host. Even chronic illnesses, such as diabetes and hypertension, yield simple numbers which can be furiously assaulted with medications. Amidst the miracles and drama of 20th century medicine we may have forgotten the importance of host support, as if time borrowed with medications and surgery were restorative in and of itself. Yet, in this age, a patient may be cured of leukemia through multiple courses of chemotherapy and bone marrow transplantation, only to die slowly of unrecognized thiamine (vitamin B1) deficiency(47). Like the vitamins discovered in the early part of this century, CoQ10 is an essential element of food that can now be used medicinally to support the sick host in conditions where nutritional depletion and cellular dysfunction occur. Surely, the combination of disease attacking strategy and host supportive treatments would yield much better results in clinical medicine.

There was one particular phrase used by Professor Lipshutz which did alarm me however –

Nature gave us, through 2.5 billion years of evolution, a number of fundamental anti-aging, free-radical scavengers that helped us to survive, on average, only to about 40 years of age, until modern medicine came along

Dear, oh dear. Does Professor Lipshutz really believe that? That life expectancy has increased in the developed world from 40 to 70 years because of “modern medicine”? That’s just not true. And it’s not even what is taught in medical schools. The BIG improvements in life expectancy are not down to medicine at all. They are down to clean water, better housing, improvements in food availability and reductions in absolute and relative poverty. We won’t improve the health of most people by technical fixes. It’s going to need some political will to change our societies.

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As part of the NHS’s 60th anniversary celebrations, Donald Berwick, President of the US organisation, the Institute for Healthcare Improvement, made a speech at one of the specially organised conferences. I’ve always been impressed by his writing and his speeches. I first encountered them when I read “Crossing the Quality Chasm” – the book which introduced me to the concept of “complex adaptive systems”, and I thoroughly enjoyed his “Escape Fire” ( a collection of ten of his annual addresses ).

His speech, in praise of the NHS, compared it very favourably to the state of health care in the US. In summary, he said this –

You could have had the American plan. You could have been spending 17% of your gross domestic product and making health care unaffordable as a human right instead of spending 9% and guaranteeing it as a human right. You could have kept your system in fragments and encouraged supply driven demand, instead of making tough choices and planning your supply. You could have made hospitals and specialists, not general practice, your mainstay. You could have obscured accountability, or left it to the invisible hand of the market. You could have a giant insurance industry of claims, rules, and paper pushing instead of using your tax base to provide a single route of finance. You could have protected the wealthy and the well instead of recognising that sick people tend to be poorer and that poor people tend to be sicker, and that any healthcare funding plan that is just must redistribute wealth. Britain, you chose well. As troubled as you may believe the NHS to be, as uncertain its future, as controversial its plans, as negative its press, as contentious its politics, please behold the mess that a less ambitious nation could have chosen.

He then went on to make ten suggestions for improvement. The first, I think was the most important and one that most health care systems haven’t even begun to implement on any significant scale –

Put the patient at the absolute centre of your system of care—In its most authentic form, this rule feels very risky to both professionals and managers, especially at first. It means the active presence of patients, families, and communities in the design, management, assessment, and improvement of care. It means total transparency. It means that patients have their own medical records and that restricted visiting hours are eliminated. It means, “Nothing about me without me.”

Apart from that he recommended strenghtening the Primary Care and Community aspects of the service, stopping the habit of more and more “reforms”, a strong plea NOT to pursue a market-led direction (ie I suspect, to do more like the Scottish NHS than the English one), and paying attention to the training and integration of the diverse employees of the NHS. Finally, he recommended aiming at health itself, not just health care.

He is astute enough to know that “great health care, technically delimited, cannot alone produce great health”. Of course it would be nice if the NHS was structured around trying to improve the health of its users, but the real big changes in health as such will be achieved through political means and societal changes, not health care ones.

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I just read Professor Richard Wilkinson’s “The Impact of Inequality” (ISBN-13: 978-1-59558-121-1). I first read Wilkinson’s work on the impact of inequality on health in the BMJ back in the early 1990s. I found his research remarkable and disturbing at the same time. Essentially what he was highlighting was that in developed countries absolute income levels were not a determinant of health. Instead, what seemed to cause the greatest harm was the size of the gap between rich and poor. In other words, income inequality within a society impacts on many parameters of health, from infant mortality to life expectancy and many disease rates in between. This was a bit puzzling. We mostly believe that poverty, of the kind where your basic material needs of food, water and sanitation are not met, is indeed deadly, but that relative poverty ie the extent to which people feel poor compared to others in society could be deadly? How could that be? Was it true?

Well, over a decade has passed and dozens of more studies have shown the link between inequality and health. In “The Impact of Inequality”, Wilkinson sets out the case very clearly and then provides an explanation for the findings. In a nutshell, he shows that psychosocial stress has an enormous impact on health, and that the key element underpinning this stress is how we think others perceive us. Shame is a strong social force. We feel it when we are not respected, when we are judged to be inferior or to have failed, when we told we are just not “good enough” or when we are dismissed as irrelevant. Social status is the root of much of this shame in all societies, but especially in unequal societies which have strong hierarchies based on dominance and competition. The biological mechanism for this stress is the body’s inflammatory response. When experiencing stress, the human organism activates cellular and hormonal systems to increase defences and prepare the subject for “fight or flight” as a fundamental survival mechanism. Years of such inner responses produces an “allostatic load” – a fairly new measure for the accumulated inflammatory activity. A high allostatic load is associated with an enormous range of chronic diseases.

Let me just cite one example. In societies where there is great economic inequality, blood cholesterol levels are higher than those in more equal societies. These high lipid levels are part of the body’s inflammatory response. The reductionist, technological, “fix” for this is to prescribe statins for more and more people for greater and greater proportions of their lives. This isn’t exactly a matter of stable doors and bolted horses but even if the statins do what they say on the tin, the problem just shifts elsewhere. Unequal societies experience lower life expectancy, particularly in those who live in the poorest strata. If they don’t die early from heart disease, they die early from something else. The answer, if we take on board what Wilkinson shows us, is political. It’s about creating more humane, more caring, more “affiliative” societies by tackling the fundamental issue of inequality.

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