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.
..... 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 .......
..... 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 .......
Iona Heath. How medicine has exploited rationality at the expense of humanity: an essay. BMJ 2016;355:i5705
Excerpts:
Excerpts:
...... 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 .......