Heroes Not Zombies

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).”