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Archive for August, 2008

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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Because I deal with stories every day, I decided to learn more about the place of narrative in human experience, but coming from a medical perspective I couldn’t find much about narrative, even though there are emerging disciplines of “narrative-based medicine” and “narrative-based research”. Instead, I found the best thinking on storytelling lay in the world of the Humanities. In fact, Richard Kearney’s “On Stories” gave me more insights than any other single work.

It was interesting, therefore, to read this perspective, from Scientific American, which describes how researchers are beginning to study the use of narrative in order to gain insights into the workings of the mind. “Why does our brain seem to be wired to enjoy stories? And how do the emotional and cognitive effects of a narrative influence our beliefs and real-world decisions?”

The first problem scientists face, however, is defining a story! What exactly constitutes a story?

Exposition contrasts with narrative by being a simple, straightforward explanation, such as a list of facts or an encyclopedia entry. Another standard approach defines narrative as a series of causally linked events that unfold over time. A third definition hinges on the typical narrative’s subject matter: the interactions of intentional agents—characters with minds—who possess various motivations.

I loved the conclusion they reached –

However narrative is defined, people know it when they feel it. Whether fiction or nonfiction, a narrative engages its audience through psychological realism—recognizable emotions and believable interactions among characters. “Everyone has a natural detector for psychological realism,” says Raymond A. Mar, assistant professor of psychology at York University in Toronto. “We can tell when something rings false.”

In other words……you just know! How often this applies in life! How do you know when you are well? How do you know when your energy levels are good? Guess it’s the same when it comes to recognising a story. It’s a function of human intuition.

Do you become immersed in stories? Completely absorbed by them? Well, it turns out that if you have prior experience which is similar to that of the characters in the stories then you are more likely to become immersed in those stories. This is kind of obvious. It means that you are more likely to become absorbed by a story if you identify with the characters. One step beyond this conclusion is interesting though…..those who become more easily immersed in a wider range of stories have been shown to be those who have the greatest capacity to empathise. Interestingly, this can work the other way too…….you can increase somebody’s ability to empathise by teaching them literature! The ability to empathise is the ability to imagine what’s going on in someone else’s mind – scientists call this “theory of mind”. Theory of mind develops in children around the age of 5 and is a key part of the human ability to live in communities. So, storytelling also has the possibility of improving our skills in living together.

Other scientists have studied stories to see what they reveal about human motivations and goals –

As many as two thirds of the most respected stories in narrative traditions seem to be variations on three narrative patterns, or prototypes, according to Hogan. The two more common prototypes are romantic and heroic scenarios—the former focuses on the trials and travails of love, whereas the latter deals with power struggles. The third prototype, dubbed “sacrificial” by Hogan, focuses on agrarian plenty versus famine as well as on societal redemption. These themes appear over and over again as humans create narrative records of their most basic needs: food, reproduction and social status.

Are these the basic, common themes we find in stories? Do you agree that stories reveal the common human patterns of motivation and desire?

Let me finish this post with the final point made in this interesting article – the power of stories to influence us. This is well understood by advertisers and PR companies, but this point really struck me –

…..labeling information as “fact” increased critical analysis, whereas labeling information as “fiction” had the opposite effect. Studies such as these suggest people accept ideas more readily when their minds are in story mode as opposed to when they are in an analytical mind-set.

Now isn’t that interesting! Stories are more likely to convince people than “facts”!

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