Wednesday, 9 November 2016

#ThinkSpeak: being human and its conflict with evidence-based medicine

How evidence-based medicine is dehumanising medicine. #ThinkSpeak #MSBlog

In a world where the haves, have ignored, forgotten, or remained foolishly unaware, of the have-nots it is always reassuring to find a human voice to make you think things are going to be alright. I had such a moment yesterday, when I read Iona Heath's essay on the 'exploitation of rationality'


I don't know Iona Heath personally, but I have read many of her pieces in the BMJ.  Having been a GP for 35 years in an inner London practice she is well qualified to be a 'champion of humanity'. There are many lessons in her essay that have relevance to the way we manage MS in the modern era and how to treat people with MS (aka MSers) and people with other chronic medical conditions in the NHS. 




...... evidence based medicine tempts us to try to describe people in terms of data from biomedical science: these are not, and will never be, enough. Such evidence is essential but always insufficient for the care of patients..... 

..... Most clinicians are not scientists; they have a different responsibility—to attempt to relieve distress and suffering and, to this end, to enable sick people to benefit from biomedical science while protecting them from its harms.....

...... Each patient has unique values, aspirations, and context..... 

...... Clinicians must see and hear each patient in the fullness of his or her humanity in order to minimise fear, to locate hope (however limited), to explain symptoms and diagnoses in language that makes sense to the particular patient, to witness courage and endurance, and to accompany suffering......

...... No biomedical evidence helps with any of this, so a rift runs through every consultation. On one side, evidence has a huge part to play, assuming it is free of bias; on the other side is the substantive role for humanity. Clinicians must constantly bridge the rift, because as Kleinman writes, “Physicians are poised at the interface between scientific and lay cultures.” ....

..... To make sense of the world the human mind simplifies experience and denies much of its complexity. The reductive nature of biomedical science and our relatively crude disease taxonomy is part of this process. It has led to enormous progress in clinical medicine but devalues individual experience......

....... Uncertainty is inevitable whenever we apply evidence from studies of populations to individuals. This evidence can only inform us about probabilities; it can never predict what will happen to an individual because “trials . . . are deliberately aimed at showing average efficacy in a diseased group rather than optimum management for individual patients.” ......

....... Yet these trials are used to construct clinical guidelines that, despite all the well meaning caveats, are too often used to coerce behaviour at the level of individual patient care through, for example, the financial incentives of payment for performance. ......

...... And worse, the evidence based medicine movement has never taken proper account of the warning of one its pioneers, Dave Sackett: “The two disciplines [preventive and curative medicine] are absolutely and fundamentally different in their obligations and implied promises to the individuals whose lives they modify." .........

....... Curative medicine is uncertain enough, but preventive medicine has become almost ludicrously so ....... 

..... Health service policy in general, and particularly evidence based medicine, is founded on the values of utilitarianism—seeking to achieve the greatest benefit for the greatest number—or those of egalitarianism—recognising equal rights to healthcare throughout society—or, most often, a rather confused mixture of the two.....

...... However, the task of clinicians is to engage with the needs and values of each patient and their moral obligation is to do the best for that particular patient .......

....... This commitment is poorly understood and little appreciated by policy makers, whose priorities relate to population or societal levels......

....... W H Auden wrote, famously, “Poetry is not concerned with telling people what to do, but with extending our knowledge of good and evil, perhaps making the necessity for action more urgent and its nature more clear, but only leading us to the point where it is possible for us to make a rational moral choice.”..... 

..... He provides another bridge across our rift and a much needed defence against the many people who want to tell patients and professionals what to do. Poems ask us to think, and most of us, when ill, want a doctor who is prepared to think. I long for a day, when instead of guidelines, doctors are simply given summaries of evidence, with clear indications of the limitations and extent of uncertainty, and always acknowledging possible harm. This would encourage clinicians to think instead of telling them what to do.......

...... So in the end my rift comes down to one between scientific evidence and literary humanism. And as long as we are spared from evidence based poetry, music, or art of any sort, these aspects of human understanding will remain dependent on genius......

...... Literary humanism allows us to find new sense and meaning in the world. And all too often, clinicians try to help their patients see a terrible world differently and to find meaning in it......

..... I am not arguing for just one side of this multifaceted rift but for a rebalancing. Medicine needs to approach each patient in the fullness of their humanity and so must draw on knowledge and wisdom from across the full range of human understanding.....

....... It seems that we may have exploited rationality at the expense of humanity. The Dutch philosopher Annemarie Mol proposes a way forward: “Instead of either pushing professionals back into their cage, or allowing them to do whatever they like, it is better to open up and share the crucial substantive questions publicly. How to live well, what to die from, and how, thus, to shape good care?”...... 

..... In his 1944 essay on Virgil, T S Eliot wrote, “In our age, when men seem more than ever prone to confuse wisdom with knowledge, and knowledge with information, and to try to solve problems of life in terms of engineering, there is coming into existence a new kind of provincialism which perhaps deserves a new name. It is a provincialism, not of space, but of time; one for which history is merely the chronicle of human devices which have served their turn and been scrapped, one for which the world is the property solely of the living, a property in which the dead hold no shares.” ......

...... Today, evidence based medicine is used to drive definitions of clinical quality that involve insufficient doubt, and this has become difficult to question because the aim is so worthy. Nonetheless, such unidimensional means are damaging because they propagate an intensely normative and objectifying view of what it means to be healthy and of what human life and healthcare should be. We need more breadth, more balance, and more doubt, and only then will our consultations cohere .......

11 comments:

  1. Nevertheless I'm pretty sure that in the mid term we would see ML/AI expert systems progressively replacing medical professionals in diagnostic and treatment related tasks. Which would have a great impact on medical care accessibility and quality.

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  2. This is an interesting post. The desire for efficiency in the NHS is, I feel, also bringing in an age of terrible uncertainty. The urge for efficiency is, at its heart, a capitalist one, but as Marx pointed out so many years ago, the capitalist framing of anything both leads to worker (read here patient) insecurity and angst; as well raising as the problem of the worker (read here patient) never being seen as a whole, merely - like a car factory lineup - just a part of the whole.

    With MS, then, a capitalistic framing of health means that we with MS are all too often seen as a disease, not a person; a patient and not a father, or a son, or a friend. This impulse towards the fragmented patient, the part of the whole viewed through the prism of the disease, begins a dehumanising process that is the hallmark of industry.

    Foucault, in the Birth of the Clinic, offers some powerful insight into how our doctor's "medical gaze" is a dehumanising process. It constitutes a medical separation of the patient's body from the patient's person, or identity. And, in entering the field of medical knowledge, the human body also enters the field of medical (and with the NHS, political power). This makes the individual a possible target for manipulation.

    It's worth watching, to highlight this reality, the arrogance of the physician unfold in a recent three part Storyville called Paolo Macchiarini: A surgeon’s downfall (http://www.bbc.co.uk/news/magazine-37311038). Macchiarini has railed against the film, but it is most telling when he demands of the film maker - 'what profession are you in?' The film maker had crossed the line of knowledge from the dumb layman to the challenger to the physician - and this unnerved the physician.

    This line - the one that separates the patient from the physician - has grown into a wall today. The wall that dictates what treatment we can get, what political value is there in treating us, what we are as people.

    I always ask my neurologist - what would you want to do if you had MS? And I feel that this is an important question to ask. Because it is one small way of breaking down the wall of power, knowledge, prejudice and privilege that separates we the people with MS from the doctor who we pray will heal us.

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  3. It's funny, some people would call this Res Ipsa Loquitor: The matter speaks for itself.

    Docs/researchers need research or an expert to convince you.

    Already, MS patients and their docs are worlds apart.

    'Please understand my difficulties doctor'.
    'Just a sec, just need to find some research on the issue'
    'Me and my difficulties are right here doctor'.
    'No, no I need evidence'.

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    1. Re: "Docs/researchers need research or an expert to convince you."

      Not sure about this; the adoption of innovations tends to be very slow in medicine, or at least in neurology. Most neurologists prefer to wait for consensus; consensus takes years and is typically way behind the curve.

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    2. Adoption of innovations is one thing.

      Refusing, for many years, to recognise pain MS patients were reporting, as a symptom of MS is another.

      'Please understand my difficulties doctor'.
      'Just a sec, need to see what my colleagues think about your difficulties'
      'Me and my difficulties are right here doctor'.
      'No, no I need my colleagues to agree... and they think your pain is in your head because MS doesn't cause pain and there is no other cause for the pain you are reporting'

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    3. On a completely separate train of thought unrelated to lying, this gaffee from the previous Aus PM reminds me a little bit of my neuro experiences in light of the observation that most neurologists prefer to wait for consensus:

      http://www.abc.net.au/news/2010-05-18/abbott-under-fire-for-gospel-truth-gaffe/830636

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  4. Evidence based medicine was my last line of defense against various pretenders and charlatans who are selling their crazy inventions and expensive procedures to desperate ms fellow sufferers. Best regards, Mladen, Zagreb, Croatia.

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    Replies
    1. No one is arguing for abandonment of evidence based medicine in favour of grass and vitamins. But in situations where there is conflicting evidence, or patient wishes are different to usual clinical practice (but not outrageous or unbacked by evidence) - then what the author calls evidence based medicine conflicts with humanity. For example, clinicians/researchers involved with MSbase are working on an MS treatments algorithm. I don't know the details of this algorithm as it has not been published yet: but what kind of a mathematical formula will predict the best treatment for an individual with MS (will it really?). Will it take into account those 'pesky' (sarcasm for I don't think they are pesky at all) people with MS who have just been diagnosed but want lemtrada, instead of going through rebif, gilenya, tecfidera and tysabri first?

      The issue is not with evidence based medicine. The issue is with how evidence based medicine is practiced in difficult areas.

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    2. ps. Mladen, we are travelling to Zagreb on 4 January, from sunny Aus.

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    3. Hvala. We certainly hope it will be jako dobro, in the middle of winter. Then heading to the coast to see what all the bure are about.

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