Biopsychosocial
Mar. 13th, 2014 07:18 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
livI went to Prof Chew-Graham's inaugural lecture this week, and it was really interesting so I want to write it up. Prof Chew-Graham is a professor of what's called "Primary Care Sciences", which basically means studying how GPs work. Inaugural lectures can be a bit odd, because they're public events and are meant to be pitched to a general audience, but they're a celebration of someone being made a professor so the subject matter usually has something to do with highly specialized and technical research. Anyway I found Prof Chew-Graham's talk really fascinating; just the list of stuff she's researched in her illustrious academic career brought up some really thinky issues.
I'm not going to transcribe the whole talk; a lot of it was biographical. But I do want to talk about some of the themes that Prof Chew-Graham brought out, because they're really interesting and I think relevant to several of you. Basically she had some really interesting observations about the relationship between medical professionals, particularly GPs and practice nurses, and patients who have long-term medical problems that can't be explained or treated adequately, notably mood disorders and chronic pain conditions.
Probably the best case scenario is that a doctor makes a correct, meaningful diagnosis which defines the root cause of a health problem, and then treats that problem, at the very least providing symptom relief even if the underlying thing is incurable. But sometimes that option is not on the table, sometimes because the doctor is incompetent or under-resourced or whatever, but more often because there's a whole swathe of stuff that isn't yet medically known. What's most helpful to patients in those situations? Prof Chew-Graham portrayed a spectrum between what she called "disposing" and what she called "holding". Disposing means that the doctor gives a definitive, medically respectable diagnosis (even if that is really a Latin translation of a description of the symptoms) and sends the patient away with the best available advice or prescription. Holding is where the doctor establishes an ongoing relationship with the patient, based on a detailed understanding of the patient's life and emotions and their own concept or story of their experiences. She wasn't claiming that one or the other is universally better, or that they're in a binary opposition, just that these are both elements of what the doctor might do if they can't cure you.
Disposing is largely what we expect from doctors these days. Certainly if you have some symptoms where the underlying physiological cause isn't known or there isn't any single physical defect in the functioning of your body, there's a lot of value in having a diagnosis, an official imprimatur from the medical system which says, yes, this person is ill, they're not just lazy or attention-seeking. If there's evidence for lifestyle changes or medication or some other form of therapy helping some people with the same collection of symptoms then lots of people are going to want to know about that, even if it's a bit hit-and-miss whether that treatment is going to help that specific individual or even if what's wrong with them is really the same as the other people who get a similar label. But if disposing is the only aim, there's a danger of doctors getting frustrated with patients if the doctor can't come up with the answer to their problem, and these leads to a break-down of empathy and caring.
Holding might well mean that the patient is taken seriously, that they're not pigeon-holed into the appropriate label and just sent away with something that may or may not help them. And if they're going to have ongoing pain or dysfunction in spite of the doctor's best efforts, at least having a supportive relationship and someone who has real empathy for how that affects their life could be a lot better than just being got rid of so the doctor can prioritize easier cases. Prof Chew-Graham gave the example of older people who have many of the symptoms of depression, but who typically see themselves people with sad things going on in their lives, not as sufferers from a medical condition called Depression.
Prof Chew-Graham was very much looking at illness and disability from a biopsychosocial perspective, which is also the framework underlying the curriculum in the medical school. I was very aware that a lot of disability activists see biopsychosocial as a dirty word, and I have certainly seen it being abused to mean that illness and disability is all a matter of bad attitude and all you have to do is pull yourself together and you'll become a productive, taxpaying member of society. To me, the idea that people's actual experience is not only a direct consequence of their individual physiology is appealing. People's life circumstances and the society they live in and their emotional and mental state and the situation of their body are all interconnected and affect eachother. That doesn't mean that someone's suffering isn't "real", it means that there are many things outside their physical bodies which might contribute to that suffering and which ideally should be addressed rather than trying to find a pill to fix issues that don't purely originate in biochemical imbalance.
Prof Chew-Graham gave some quite telling examples from transcriptions of consultations and interviews with doctors who tend towards disposal more than holding. A doctor gives his patient advice that it would be healthy to eat more fish, and the patient explains that he can't really afford very much fish, fish is too expensive. So the doctor changes the subject entirely and starts discussing the blood test results. The patient reported feeling shut down and not listened to; would it have been better to actually get into a discussion of his financial situation and how that was affecting his health, even though finances are much more about society and external things than his physiology? A woman comes to the practice nurse with problems with asthma, and tries to talk about her recent divorce and how she's struggling to cope as a single mother, but the nurse redirects the conversation to talking about respiratory symptoms. It seems highly likely to me that the stress of going through a divorce would affect asthma symptoms, which doesn't mean that the asthma is purely imaginary, it means that the woman probably needs support with managing stress and dealing with parenting as well as an inhaler.
Equally, there are plenty of problems that can occur when a doctor assumes that everything is just a manifestation of a patient's distress and not an actual physiological issue which needs to be addressed. Prof Chew-Graham talked quite a bit about instances where people who have depression as well as another comorbid health condition are dismissed as "somatizing" and therefore the health condition goes untreated. She quoted a doctor characterizing depression as a socially acceptable reason not to have to work for a living. But that could be taken two ways; maybe some depressed people aren't "really" mentally ill but just don't want to work, or maybe depression is itself a manifestation of a social problem where lots of people can only subsist by spending five decades working at unsatisfying and miserable jobs. The fact that's a terrible waste of your life is not an acceptable reason to opt out of doing that, so you have to be either a wage-slave or ill.
Some of Prof Chew-Graham's work has been on Chronic Fatigue Syndrome, which is really at the sharp end of this stuff. It seems like activists for this condition really really want it to have a purely biomedical cause, such as really latching on to some flawed research that suggested it might be caused by a retrovirus and campaigning against any criticisms of that research. Prof Chew-Graham's own studies have shown some benefit, though not enough to make it cost-effective, to the extremely controversial graded exercise therapy. I know several people who have CFS and I've read lots of writing about it online, and I can entirely sympathize with why people want disposing doctors. Because of the way society is, your life sucks quite a bit less if you have an official medical name for your condition, if you have a diagnosis of Chronic Fatigue and Immune Dysfunction Syndrome / Myalgic Encephalomyelitis. And maybe a hypothesis that it's caused by viruses or mitochondrial dysfunction or something technical sounding. That's partly because society is awful and ableist and doesn't accept that some people are ill and disabled without an obvious, single pathogenic cause. It could be partly psychological, or it could be a collection of symptoms which don't actually all have the same underlying cause, and would still be a perfectly real illness.
Right now it isn't treatable at all; obviously that means that there should be more research, including molecular bioscience research, into its causes and possible treatments. But it also might mean that Prof Chew-Graham would advocate for a more holding sort of doctor attitude. Yes, doctors are gatekeepers and people who are given the label of CFIDS/ME and sent may get some degree of access to services that wouldn't be available if they just have chronic fatigue and other miscellaneous, unexplained symptoms. I don't know whether some people at least would benefit from doctors actually listening to them talking about their lives and their feelings and helping them to devise coping strategies over the long term, rather than just, ok, I've done my job, I've found out your diagnosis. Almost certainly people's symptoms (with CFS or anything else) are going to be affected by their life circumstances and emotional state, and the illness itself will affect their circumstances and mood as well. Is there a way for doctors to address biopsychosocial context usefully, without dismissing the illness as imaginary or all in someone's head?
This stuff is complicated. It's very easy to be glib and say that doctors should be empathetic and holistic and "treat the person, not the symptoms". But it's not at all obvious how to do that, it may require quite sweeping changes in medical training and the culture of medical practice. Some of what Prof Chew-Graham works on is how to make that ideal actually happen in real life, the nitty-gritty of how doctors can listen to and empathize with and establish holding relationships with people who have long-term, currently incurable and / or unexplainable symptoms. And providing resources for people with such conditions to help them self-advocate and generally get more satisfactory responses from the doctors they interact with. But this happens within the context of a society that has some quite narrow and I think harmful ideas about what illness actually is, and because of that it may be actively bad for some people to have doctors take this kind of holistic or biopsychosocial stance, it may mean that their problems are not taken seriously because as a culture we don't really care about emotional problems or even about medical problems that have an emotional component.
You could also put a case that GPs aren't the right people to be doing this "holding". Time pressures and case load and lack of training and cultural expectations of what a doctor should be doing might mean that they're just not well placed to help at all in cases where they can't help with a clear-cut diagnosis and a straightforward, evidence-based treatment. Maybe all GPs should be doing is referring people and directing resources on to professionals who are actually trained in holding. Religious professionals, support groups, and of course actual psychotherapists.
I hope I've been respectful in bouncing ideas around sparked off by Prof Chew-Graham's lecture. I don't myself have any chronic illness, mental illness or disability, so this is speculation coming from a place of ignorance. I am very much open to be told that I'm talking offensive nonsense here.
I'm not going to transcribe the whole talk; a lot of it was biographical. But I do want to talk about some of the themes that Prof Chew-Graham brought out, because they're really interesting and I think relevant to several of you. Basically she had some really interesting observations about the relationship between medical professionals, particularly GPs and practice nurses, and patients who have long-term medical problems that can't be explained or treated adequately, notably mood disorders and chronic pain conditions.
Probably the best case scenario is that a doctor makes a correct, meaningful diagnosis which defines the root cause of a health problem, and then treats that problem, at the very least providing symptom relief even if the underlying thing is incurable. But sometimes that option is not on the table, sometimes because the doctor is incompetent or under-resourced or whatever, but more often because there's a whole swathe of stuff that isn't yet medically known. What's most helpful to patients in those situations? Prof Chew-Graham portrayed a spectrum between what she called "disposing" and what she called "holding". Disposing means that the doctor gives a definitive, medically respectable diagnosis (even if that is really a Latin translation of a description of the symptoms) and sends the patient away with the best available advice or prescription. Holding is where the doctor establishes an ongoing relationship with the patient, based on a detailed understanding of the patient's life and emotions and their own concept or story of their experiences. She wasn't claiming that one or the other is universally better, or that they're in a binary opposition, just that these are both elements of what the doctor might do if they can't cure you.
Disposing is largely what we expect from doctors these days. Certainly if you have some symptoms where the underlying physiological cause isn't known or there isn't any single physical defect in the functioning of your body, there's a lot of value in having a diagnosis, an official imprimatur from the medical system which says, yes, this person is ill, they're not just lazy or attention-seeking. If there's evidence for lifestyle changes or medication or some other form of therapy helping some people with the same collection of symptoms then lots of people are going to want to know about that, even if it's a bit hit-and-miss whether that treatment is going to help that specific individual or even if what's wrong with them is really the same as the other people who get a similar label. But if disposing is the only aim, there's a danger of doctors getting frustrated with patients if the doctor can't come up with the answer to their problem, and these leads to a break-down of empathy and caring.
Holding might well mean that the patient is taken seriously, that they're not pigeon-holed into the appropriate label and just sent away with something that may or may not help them. And if they're going to have ongoing pain or dysfunction in spite of the doctor's best efforts, at least having a supportive relationship and someone who has real empathy for how that affects their life could be a lot better than just being got rid of so the doctor can prioritize easier cases. Prof Chew-Graham gave the example of older people who have many of the symptoms of depression, but who typically see themselves people with sad things going on in their lives, not as sufferers from a medical condition called Depression.
Prof Chew-Graham was very much looking at illness and disability from a biopsychosocial perspective, which is also the framework underlying the curriculum in the medical school. I was very aware that a lot of disability activists see biopsychosocial as a dirty word, and I have certainly seen it being abused to mean that illness and disability is all a matter of bad attitude and all you have to do is pull yourself together and you'll become a productive, taxpaying member of society. To me, the idea that people's actual experience is not only a direct consequence of their individual physiology is appealing. People's life circumstances and the society they live in and their emotional and mental state and the situation of their body are all interconnected and affect eachother. That doesn't mean that someone's suffering isn't "real", it means that there are many things outside their physical bodies which might contribute to that suffering and which ideally should be addressed rather than trying to find a pill to fix issues that don't purely originate in biochemical imbalance.
Prof Chew-Graham gave some quite telling examples from transcriptions of consultations and interviews with doctors who tend towards disposal more than holding. A doctor gives his patient advice that it would be healthy to eat more fish, and the patient explains that he can't really afford very much fish, fish is too expensive. So the doctor changes the subject entirely and starts discussing the blood test results. The patient reported feeling shut down and not listened to; would it have been better to actually get into a discussion of his financial situation and how that was affecting his health, even though finances are much more about society and external things than his physiology? A woman comes to the practice nurse with problems with asthma, and tries to talk about her recent divorce and how she's struggling to cope as a single mother, but the nurse redirects the conversation to talking about respiratory symptoms. It seems highly likely to me that the stress of going through a divorce would affect asthma symptoms, which doesn't mean that the asthma is purely imaginary, it means that the woman probably needs support with managing stress and dealing with parenting as well as an inhaler.
Equally, there are plenty of problems that can occur when a doctor assumes that everything is just a manifestation of a patient's distress and not an actual physiological issue which needs to be addressed. Prof Chew-Graham talked quite a bit about instances where people who have depression as well as another comorbid health condition are dismissed as "somatizing" and therefore the health condition goes untreated. She quoted a doctor characterizing depression as a socially acceptable reason not to have to work for a living. But that could be taken two ways; maybe some depressed people aren't "really" mentally ill but just don't want to work, or maybe depression is itself a manifestation of a social problem where lots of people can only subsist by spending five decades working at unsatisfying and miserable jobs. The fact that's a terrible waste of your life is not an acceptable reason to opt out of doing that, so you have to be either a wage-slave or ill.
Some of Prof Chew-Graham's work has been on Chronic Fatigue Syndrome, which is really at the sharp end of this stuff. It seems like activists for this condition really really want it to have a purely biomedical cause, such as really latching on to some flawed research that suggested it might be caused by a retrovirus and campaigning against any criticisms of that research. Prof Chew-Graham's own studies have shown some benefit, though not enough to make it cost-effective, to the extremely controversial graded exercise therapy. I know several people who have CFS and I've read lots of writing about it online, and I can entirely sympathize with why people want disposing doctors. Because of the way society is, your life sucks quite a bit less if you have an official medical name for your condition, if you have a diagnosis of Chronic Fatigue and Immune Dysfunction Syndrome / Myalgic Encephalomyelitis. And maybe a hypothesis that it's caused by viruses or mitochondrial dysfunction or something technical sounding. That's partly because society is awful and ableist and doesn't accept that some people are ill and disabled without an obvious, single pathogenic cause. It could be partly psychological, or it could be a collection of symptoms which don't actually all have the same underlying cause, and would still be a perfectly real illness.
Right now it isn't treatable at all; obviously that means that there should be more research, including molecular bioscience research, into its causes and possible treatments. But it also might mean that Prof Chew-Graham would advocate for a more holding sort of doctor attitude. Yes, doctors are gatekeepers and people who are given the label of CFIDS/ME and sent may get some degree of access to services that wouldn't be available if they just have chronic fatigue and other miscellaneous, unexplained symptoms. I don't know whether some people at least would benefit from doctors actually listening to them talking about their lives and their feelings and helping them to devise coping strategies over the long term, rather than just, ok, I've done my job, I've found out your diagnosis. Almost certainly people's symptoms (with CFS or anything else) are going to be affected by their life circumstances and emotional state, and the illness itself will affect their circumstances and mood as well. Is there a way for doctors to address biopsychosocial context usefully, without dismissing the illness as imaginary or all in someone's head?
This stuff is complicated. It's very easy to be glib and say that doctors should be empathetic and holistic and "treat the person, not the symptoms". But it's not at all obvious how to do that, it may require quite sweeping changes in medical training and the culture of medical practice. Some of what Prof Chew-Graham works on is how to make that ideal actually happen in real life, the nitty-gritty of how doctors can listen to and empathize with and establish holding relationships with people who have long-term, currently incurable and / or unexplainable symptoms. And providing resources for people with such conditions to help them self-advocate and generally get more satisfactory responses from the doctors they interact with. But this happens within the context of a society that has some quite narrow and I think harmful ideas about what illness actually is, and because of that it may be actively bad for some people to have doctors take this kind of holistic or biopsychosocial stance, it may mean that their problems are not taken seriously because as a culture we don't really care about emotional problems or even about medical problems that have an emotional component.
You could also put a case that GPs aren't the right people to be doing this "holding". Time pressures and case load and lack of training and cultural expectations of what a doctor should be doing might mean that they're just not well placed to help at all in cases where they can't help with a clear-cut diagnosis and a straightforward, evidence-based treatment. Maybe all GPs should be doing is referring people and directing resources on to professionals who are actually trained in holding. Religious professionals, support groups, and of course actual psychotherapists.
I hope I've been respectful in bouncing ideas around sparked off by Prof Chew-Graham's lecture. I don't myself have any chronic illness, mental illness or disability, so this is speculation coming from a place of ignorance. I am very much open to be told that I'm talking offensive nonsense here.
(no subject)
Date: 2014-03-15 12:36 pm (UTC)On the other hand, I managed to leverage that attitude once - it took me ten minutes to argue one GP into sending me for an allergy test, by eventually saying that spending an hour every morning and every evening sneezing my head off, and the rest of the day stuffed up, was making my depression worse.