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Archive for August, 2008

I think poets have not only the keenest powers of observation but their words illuminate. The world looks different after reading poetry. I’m not referring to particular passages which have changed my perception or understanding of particular places or experiences. I’m referring to, well, what would you call it? The poetic stance? The poetic viewpoint? The poetic way of living maybe……

When I was a teenager (a LONG time ago) I bought a little book by the poet Stephen Spender. It was called “Life And the Poet”. It was a small paperback with a darkly yellowed cover. It was published in 1942 apparently. I’m sure I must have it somewhere but I can’t lay my hands on it right now and it’s almost 40 years since I opened it and read any of it. But I seem to remember two things he said. One was that he said poets should be like visitors from another planet. It was his way of saying a poet should approach the world with wonder and amazement (a bit like those French philosophers I read recently). I liked that a lot. It stuck. And he also said, I think (bare with me, this memory is a long way off!), that poetry taught us how to “make life anew” and that was a reason to live. That stuck too. (or maybe I’ve invented that for myself after all these years……I’ll need to find my old copy, or another one, and read it again)

I paid a visit recently to the lovely Watermill Bookshop in Aberfeldy
Watermill Bookshop Aberfeldy

As I browsed the shelves my eye was caught by a book entitled “Findings” by Kathleen Jamie (ISBN 978-0-954-22174-4). Never heard of the book before, and I’d never heard of the author either, but the back cover described her as an “award winning poet” who has an “eye and an ease with the nature and landscapes of Scotland”. I opened the book and the paper under my fingers made me stop and wonder. It felt lovely. A soft roughness if you can imagine such a thing. Immediately it felt natural, and special, and thrillingly sensuous. This feels like a lovely book, I thought. Now that doesn’t happen often. I can enjoy the weight, the feel, the scent of a real book (no, computers will never replace the book), but I can’t remember when I ever before picked up an unknown book like this and felt transfixed. It caught me. Physically. So I sat down in one of the many comfy, leather armchairs and I started to read. Did I have any doubts? From the moment I held it in my hand, did I have any sense that I’d put it back on the shelf? I don’t think so. I think I knew I’d relish, yes, that’s the right word, relish this book. I bought it of course.

Findings

It’s not a book of poetry, but a book of essays – a poet’s living.

Some of the subjects she writes about are familiar to me. Orkney, salmon ladders, prehistoric stone markings, the Surgeons’ Hall in Edinburgh and the Edinburgh skyline. But even the familiar seemed brand new in her eyes, in her words. She’s a keen observer of nature, especially birds, and in the essay entitled, “Peregrines, Ospreys, Cranes” she writes this…..

This is what I want to learn: to notice, but not to analyse. To still the part of the brain that’s yammering, “My God, what’s that? A stork, a crane, an ibis? – don’t be silly, its just a weird heron”. Sometimes we have to hush the frantic inner voice that says “Don’t be stupid” and learn again to look, to listen. You can do the organising and redrafting, the diagnosing and identifying later, but right now, just be open to it, see how it’s tilting nervously into the wind, try to see the colour, the unchancy shape – hold it in your head, bring it home intact.

That’s what I want to learn too – to notice, to look, to listen, without processing it all, but taking the experiences home and turning them over later. My camera helps me do that, but Kathleen Jamie’s words inspire me to write more down, to write it down as soon as possible……not the analysis, the experience, the perception, the observation. To relish the “emerveillement” of living.

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Here’s an interesting article you can read at timesonline. It’s about the writer Colin Thubron. He says that he had a car accident back in 1978 and fractured his spine, some ribs and dislocated his shoulder. As a result he ended up in hospital for a few weeks.

The enforced idleness of lying flat on my back in hospital sent my mind into overdrive; I became more and more of a megalomaniac, and there was now some element of wanting to confront the fear. I decided there must be something bigger to write about, and I conceived the idea of walking the Great Wall of China and driving round Russia. Those ambitions were what kept me afloat. The Russian book was my first success, and it might not have happened without the accident. I don’t think the accident changed the trajectory of my emotional life, but it left me with a greater sense of my own vulnerability, and the need to maximise whatever time is left.

There are a number of points there which caught my attention. First of all, none of us would choose to have a serious accident, just like none of us would choose to be ill. But stuff happens! Accidents, illness and death don’t always happen to other people! How you react to the event is what determines the course of life thereafter. For Thubron it was a time of enforced “idleness”. He used the time to reflect on how life was going (holidays and “artist’s dates” are nicer ways to do this than accidents and illness!), and in that reflection decided it was time to think bigger. There’s the second point. He took the time to dream and he dreamt big! That led to what he describes as his “first success”, his book about Russia. Thirdly, look what he says in the final phrase……

but it left me with a greater sense of my own vulnerability, and the need to maximise whatever time is left.

You can be too aware of your vulnerability. Some people I meet are paralysed by insecurity and fear. But some awareness of it is a good thing. It’s a good thing if it leads to what he describes as “the need to maximise whatever time is left.”

Making the most of today. A wise counsel.

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I have a real love hate relationship with statistics. I’ve heard it said that all men love figures. Well, I’m not any different that way. Numbers interest me. On the other hand, however, I hate statistics! Actually, that’s not really true. What I hate is when statistics are given as “the truth”, or are given greater weight than human experience. My preference is always for stories. I am completely hooked on stories. The work of Gigerenzer really impresses me and I was reminded of his work yesterday when I read a piece on the BBC site about statistics. The piece is written by Michael Blastland and I enjoyed his style. He started off by picking up on a news item which claimed that vitamin E increased the risk of death by 14%. As he rightly points out the risk of death for all of us is 100%, so what point was the journalist trying to make? That the risk of death if you take vitamin E is 114%?! The thrust of the article is that we need to reconnect figures to human experience. He suggests we do this in two ways –

First, we need to remember that not much in life is either/or. According to the research, there’s something in the claim that Vitamin E supplements can be harmful. But, as with the consumption of salt, or even water, much that can kill is also essential to good health. The world does not divide easily into what’s toxic and what’s not, what’s safe and what isn’t. Risk is simply a way of measuring where we stand on the messy middle ground – which is almost everywhere. What matters in that messy middle is the relevant human quantity: how much supplementary vitamin E? A little won’t do any harm (or, probably, much good). A lot, especially if you are getting on in life, might. So a 14% increase in risk of death does mean something, but only if you say at what dose (high), for which group (the elderly), over what period (a single year, not in a lifetime).

The second common problem with any percentage increase like this, also crying out for a dose of real life is: what’s it increased from? Because 14% might be a lot if you start somewhere big, next to nothing if you start somewhere small. A 100% increase from one in a million becomes two in a million. So what? A 100% increase in the number of bullets in a revolver – if you are playing Russian roulette – well, that makes a difference.

I loved his concluding paragraph –

A percentage is not really a number, it is a share. The simple question to keep in mind is one that always strives to put it into a proper, human context: “A share of what? A share of a lot – or a share of a little?” Better still: “A share of who?” Keep it real.

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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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logic of care

The Logic of Care by Annemarie Mol, Professor of Political Philosophy, University of Twente, Netherlands ISBN 978-0-415-45343-1

Every now and then I read something which challenges my thinking. This is one of those books. The subtitle of the book is “Health and the Problem of Patient Choice”. I thought, “what problem?”, by which I mean isn’t it just a “good thing”? Aren’t we hearing this mantra increasingly often? That the way ahead for health care is to increase patient choice? Wasn’t this even what was implied by my post about the shift in power from doctors to patients? Yet, one of the commenters on that post made me feel immediately uncomfortable because they highlighted the issue of patients being seen as “customers”, which just doesn’t feel right to me. In fact, I’ve often felt I’m a bit out of step with new terminologies because I don’t like “patients” being referred to as “clients” or “customers” or any of the other preferred modern terms! However, right from the outset, Annemarie Mol questions our “logic of choice” – not only in health care, but in society more generally. She points out that in society, the emphasis on choice is not all that it seems. If, like me, you haven’t thought much about this before, this questioning of “the logic of choice” is challenging…..

“Sociologists have emphasised that all humans are born naked and helpless and depend on others for their survival for years. Even as adults Westerners are independent – all the more since they no longer cultivate their own food, sew their own clothes, or bury their own dead. Some sociologists have studied how in actual practice people in “free societies” make their choices. They have found that making choices takes a lot of energy, energy that not everybody has to spare or likes to spend on it. They have also found that “we” end up choosing remarkably similar things. Indeed, some scholars have argued that autonomy is not the opposite of heteronomy at all. Instead, they say, making people long for choices and invest a lot in making them, is a disciplining technique.”

“A second widespread way of doubting the ideal of choice is to point out that when it comes to it almost nobody (ill or healthy) is any good at it. It is difficult for all of us to weigh up the advantages and disadvantages of one uncertain future against another.”

As she points out, when somebody is acutely ill, they aren’t in a position to make choices. Instead, she says, what they need most is care. She shows how the logic of choice presupposes which finite and distinct products, instruments, outcomes, and so on are on offer. Having chosen, the patient awaits the promised outcome. In the logic of care the emphasis is on actions, interactions and processes. It isn’t about outcomes, it’s about experiences, or ways of living.

“Care is not a limited product, but an ongoing process”

“….consumers can help each other with their choices and they may buy as much kindness and attention as they can afford. However, and this is my point, in one way or another a market requires that the product that changes hands in a transaction be clearly defined. It must have a beginning and an end. In the logic of care, by contrast, care is an interactive, open-ended process that may be shaped and reshaped depending on its results. This difference is irreducible. It implies that a care process may improve even though less product is being supplied.”

The biggest problem with clinical epidemiology and the logic of choice approach is the unpredictable nature of reality.

“……diseased bodies are unpredictable. It follows form this unpredictability that care is not a well-delineated product, but an open-ended process. Try, adjust, try again. In dealing with a disease that is chronic, the care process is chronic too. It only ends the day you die.”

“Do not just pay attention to what technologies are supposed to do, but also to what they happen to do, even if this is unexpected. This means that good professionals need to ask patients about their experiences and attend carefully to what they are told, even if there is nothing about it in the clinical trial literature. There won’t be. The unexpected is not included in the design of trials. The parameters to be measured are laid out in the first stage of a clinical epidemiology research project. If doctors and nurses want to learn about the unexpected effects of interventions, they should treat every single intervention as yet another experiment. They should, again and again, be attentive to whatever it is that emerges.”

This unpredictability undermines the logic of the dominant approach to medicine –

“The scientific tradition that is currently most prominent in health care – that of clinical epidemiology – has not been designed to deal with the unexpected effects of interventions. Tracing these requires that one be open to surprises. Since unforeseen events cannot be foreseen and unidentified variables cannot be counted, other research methods are needed to learn more about them. Promising among these are the clinical interview and the case report. In good clinical interviews patients are granted time and space to talk about what they find striking, difficult or important. The diverse and surprising experiences are carefully attended to. Case reports in their turn are stories about remarkable events. They make these events transportable so that others may learn from them.”

And the answers are to be found in stories – in listening to patients and professionals and to reporting what is learned.

“The ideal of patient choice presupposes professionals who limit themselves to presenting facts and using instruments. In the linear unfolding of a consultation, a professional is supposed to give information, after which the patient can assess his or her values and come to a decision. Only then is it possible to act. However, care practices tend not to be linear at all. Facts do not precede decisions and activities, but depend on what is hoped for and on what can be done. Deciding to do something is rarely enough to actually achieve it. And techniques do more than just serve their function – they have an array of effects, some of which are unexpected. Thus, caring is a question of “doctoring”: of tinkering with bodies, technologies and knowledge – and with people, too.”

I like her emphasis on doctoring instead of technologies and products –

“I want to talk of doctoring. Within the logic of care engaging in care is a matter of doctoring. Doctoring again depends on being knowledgeable, accurate and skilful. But, added to that, it also involves being attentive, inventive, persistent and forgiving.”

And of her emphasis, not just on good communication –

“Good communication is a crucial precondition for good care. It also is care in and of itself. It improves people’s daily lives.”

…..not just communication, but “conversations” –

“Good conversations in a consulting room do not take the shape of a confrontation between arguments, but are marked by an exchange of experiences, knowledge, suggestions, words of comfort.”

“Let us doctor, and thus, in careful ways, experiment with our own lives. And let us tell each other stories. Case histories. Public life deserves to be infused with rich stories about personal events.”

Life is complex. Health is complex. It cannot be reduced to events, interventions, targets and outcomes. Patients are not consumers. The model of markets, goods, services, purchasers and providers may well NOT be the best one for health care. This is not least because people with chronic diseases need attention for life, but also because we all have a variety of different values and priorities which, themselves, will vary through the evolving different contexts of our lives.

“Clinical epidemiology has developed clinical trials as research tools to inquire into the effectiveness and effectivity of treatments. Clinical epidemiology itself however, relates to patient choice in an ambivalent way. Sometimes it indeed presents its trials as tools that increase knowledge of the “means” that doctors have at their disposal, suggesting that the “ends” can be established elsewhere. At other times, however, clinical epidemiology casts patient choice as superfluous. For if trials show which treatments are more effective and efficient than their alternatives, there is no further need to make decisions. Just go for the treatments the trials show to be best! To the adherents of this line of thought, it is a great puzzle: why do professionals not comply? Why do they refuse to implement the results of front-line clinical trials? There is a lot going on here, but let me just note that this question fails to recognise that the parameters explored in trials, their measures of success, do not necessarily map onto the ends that patients and their doctors may want to achieve. If there are different treatments, the question is not just which of them is more effective, but also which effects are more desirable. The question is not just which treatment has the greatest impact on a given parameter, but also which parameter to measure. In chronic diseases “health” is out of reach, so it is not obvious which parameter to go for. Different treatments may well improve different parameters. Or, to put it in the terms used in the logic of choice: not all technologies serve the same ends and not all ends are equally worthwhile to everyone concerned.”

“Some diseases can never be cured, some problems keep on shifting. Even if good care strives after good results, the quality of care cannot be deduced from its results. Instead, what characterises good care is a calm, persistent but forgiving effort to improve the situation of a patient, or to keep this from deteriorating.”

And, finally, I completely agree with her emphasis on acting – on what we DO

“The logic of care is not preoccupied with our will, and with what we may opt for, but concentrates on what we do.”

“Rather than taking you for a spectator of your life, they expect you to play a leading part in it. Thus, in the logic of care it is not the noun that is crucial, life (an object that can be judged), but rather the verb, to live (an activity of which we are the subjects).”

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fairies

I love seeds. They fascinate me. Once you see which plant produces which seed then you can look at a seed and imagine how it might turn out if it finds fertile ground and grows to maturity. But if you look at a seed which comes from a plant you’ve never seen before, it is totally impossible to imagine the mature plant which lies as only a potential inside this seed.
Maybe it’s just the way my mind works, but I often think the same thing when I look at a baby. What potential lies in this little one? How will they be as a fully grown adult? It’s astonishing really.

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Some ten years ago my daughter lived way up in the very north west corner of Scotland – just outside Durness. There was a local pottery run by a woman called Lotte Glob. Her work was really not like any other pottery I’d ever seen. As well as making cups and utility pottery (but quite exquisite and each piece totally unique), she gathered materials from the ground around where she lived, mixed them into works art and placed the art back into the landscape where she’d gathered the material. The idea completely caught my imagination. Over a few trips we collected a number of cups. I love how underneath each one is just two words “far north”.

Here are some of them –

lotte glob mugs
lotte glob mugs
lotte glob mugs

She has an exhibition currently and she’s published a beautiful book about her “floating stones” project.
I saw her exhibition at the Watermill Bookshop in Aberfeldy last weekend. It was stunning. Look at this simple tile for just one example –

lotte glob tile
lotte glob tile

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I think one of the loveliest buildings in Edinburgh (inside AND out) is the National Portrait Gallery in Queen Street.

scottish portrait gallery

Until the 21st of September they have a special exhibition on show – the Vanity Fair Portraits 1913 – 2008.

I can’t emphasise enough the difference between looking at an image on the web, or in a book, and actually seeing the original in a gallery. As I walked into this exhibition the first portait I saw was of Isadora Duncan.

isadora duncan

isadora duncan

Now, that photo doesn’t look much in this small form, does it? But in the original, large portrait, it is simply stunning. The exuberance of Isadora makes her seem as if she is filling the entire image, yet the smallness of her inbetween the huge pillars makes her seem tiny. Somehow, as you stand in front of this portrait, you can perceive both her greatness and her smallness at exactly the same moment. It’s unnerving, it’s amazing and it’s intensely moving. Well, that was the first portrait I stopped to look at and one after the other this fabulous collection totally captivated me.

One strong theme runs through many of these images – the uniqueness and the impressiveness of the subjects. Powerful, vibrant, unique human beings. I strongly recommend this exhibition. If you can’t get to Edinburgh look out for these portraits being shown near you.

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nigella

Black cumin, or “love-in-a-mist”, or “nigella sativa
Isn’t that a beautiful flower? I love both the double layer of petals and the spiral patterns. They give such a feeling of movement.

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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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