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: 2014-03-13 08:40 pm (UTC)I have only been officially diganosed with one chronic illness, but possibly have others (official is allergies, unofficial is depression and Meniere's (which is very mild and usually not much of an issue)).
A few years ago, (five or six years ago?) I started having issues breathing. I couldn't get a full breath. It started in like Feb and by Sept/Oct, I could barely breath. I went to the GP and got an inhaler. Within days, I was back, breathing worse than ever. Got something else (two different meds) and was sent away. That worked for a while, but I gained 8 lbs in 4 months and then I was feeling like maybe the meds weren't working so well.
I went to a pulmonologist (who told me there was no problem with my breathing, it must be anxiety) and a cardiologist, who found nothing wrong (thankfully).
While anxiety/depression is an issue for me, it has never been diagnosed and I thought it was pretty shitty of this guy to dismiss me as hysterical, basically.
Finally, I went to an allergist and as soon as I started getting allergy shots, my breathing started to improve. Granted, it took a while before it was more or less normal, but it was clearly the right thing to do.
All this is to say -- I think the cause was allergies exacerbated by stress. I don't know if the allergy treatment works as a placebo (basically) or if it's actually treating me, but I do feel that if a patient comes in and says there is a biophysical factor, the doctors should take that seriously.
I feel like the focus on specialization has narrowed some care providers focus so greatly, they can't make any connections.
Er, stepping off soapbox now. :D Thanks for sharing!
(no subject)
Date: 2014-03-13 10:04 pm (UTC)(no subject)
Date: 2014-03-13 10:42 pm (UTC)I'm not sure I agree that it is a spectrum between disposing and holding. There are a few behaviours (at least one, anyway) that manifests as something either perpendicular or parallel to the line between those two ends, or as something that can only exist away from the axis between them.
I am fairly strongly sure that my mental health issues are not just biochemechanical processes not operating correctly (maybe even not these at all), and that things that have happened to me (are happening to me) have a much greater impact. I feel this strongly enough to not want to complicate things any further with mood-altering medication.
I don't know if you talked about illnesses that don't "on paper" affect the mental state having an impact on the mental state, but this is something that I feel happens to me as well. And talking about this makes me realise why
There's probably more I could say, but I'm not sure I have the words.
(no subject)
Date: 2014-03-13 10:49 pm (UTC)(no subject)
Date: 2014-03-14 09:46 am (UTC)I'm sorry you had such a bad time getting your allergies sorted out. I mean, with the best will in the world that's sometimes how medicine is, you come in with some symptoms and they give you the medicine that works for the largest number of people with similar symptoms and it doesn't work so they try a different medicine, and that has bad side effects, so eventually they start looking for rarer diagnoses and more specialist treatments. But it's pretty awful that you had to go through the pulmonologist not taking you seriously and treating you as hysterical.
I guess a lot of my friends, really a lot, have had bad experiences with unexplained symptoms and / or depression, where doctors just assume they're making it up rather than accepting the limitations of their own medical knowledge. So one of the things that was striking about the talk was that Prof Chew-Graham was giving examples with people having a problem the other way, that they have all this stuff going on in their lives and the doctors don't want to listen, they only care about the measurable physical symptoms.
In theory, the point of GPs is to get round the issue of over-specialization and docs not having the full picture or the ability to make connections. But obviously that's an ideal which doesn't always work.
(no subject)
Date: 2014-03-14 09:58 am (UTC)In principle, one of the points of having GPs is that they are meant to be communicating with other professions and handling the case management. That's part of what Prof Chew-Graham's research is about, finding better ways to actually make that happen in reality. Especially since the trend in this country is to move to more community-based care, which is supposed to centre around GPs. But you're right, it does too often fall on the patient to hold everything together, including joining up the psychological and supportive aspects of their care with the biomedical side. And sometimes the services just aren't there to refer people to.
(no subject)
Date: 2014-03-14 10:06 am (UTC)There are definitely things doctors do that are neither disposing nor holding. Like dismissing their patients' concerns as just attention-seeking and non-compliance, which is really neither. I can't quite tell from your comment, was there a specific doctor behaviour you had in mind that is away from the axis?
It's really interesting to hear from someone who specifically wants doctors to take into account what's actually happened to you and not prescribe medication. I have a lot of friends who end up basically begging for medication and biomedical investigations of their conditions, (only having to do so discreetly because otherwise that's drug-seeking). So they're really frustrated with docs insisting that the problem is their life circumstances and emotional state when they're pretty sure there's something physiologically wrong.
Absolutely, illnesses which are defined under the false binary as "physical" will certainly have a mental and emotional impact. That's part of the point of the biopsychosocial model, that being ill affects your life and emotional wellbeing, and your life circumstances and emotions affect your bodily experiences. That's the reason why I like the biospyschosocial approach, because I do see all these things as intimately connected. But there is the very real danger of people with life-threatening conditions going untreated because docs assume that it's all about having a positive attitude and living a healthy lifestyle.
(no subject)
Date: 2014-03-14 11:07 am (UTC)This is also the GP who actually prescribed me a Room Of My Own when I went to her with a range of vague symptoms when I was stuck at home with a third baby. "Is there anywhere in the house where you can shut the door and just be you?". I think she's brilliant. I've heard other people complain that she is too brisk and unsympathetic but I appreciate down-to-earth common sense about the psychological as well as the medical side. But this does highlight the point that people need GPs whose approach works for them and that it should be possible to switch until you find one who is on the same wavelength.
(no subject)
Date: 2014-03-14 01:30 pm (UTC)Well, there's that, but there's also "sure, I'll refer you to $specialist", then a month later "no, I haven't referred you to $specialist yet, $excuse. [$apology|$nothing|$gaslighting]", and then the same again a month later. I've had this happen at least once. On Tuesday, I'm about to find out if this has happened again.
Well, I basically am begging for begging for medication and biomedical investigations of things that are wrong with me. I'm just refusing "pills only" solutions, as I've found them to be rather dismissive. Before I moved up here, I basically didn't go to my GP in Bristol at all for about a year, because she was very much a "throw pills at the problem and hope it goes away" doctor. The desk staff were then kinda dismissive about me wanting to change to another GP at the same clinic. This, combined with other experiences, has left with me a strong distrust of the entire medical profession. I'm just glad that both my 1IA and 2IA were actually really good (my 1IA especially).
It also doesn't help that basic pain medication (paracetamol and ibuprofen) kinda does nothing for the pain that I get, either near-constant or intermittent. Which has made me reluctant to take pills for just about anything (except for the estrogen, of course, which I still am having to acquire on my own terms), for belief that they will either not help or make things worse. And don't get me started on blood tests...
There's definitely one thing I can think of that is a "physical" problem affecting me mentally. I have issues sleeping properly, and from getting enough "value" from sleep. This is most likely caused by sleep apnea (a conclusion reached by
(no subject)
Date: 2014-03-14 05:39 pm (UTC)In theory, the point of GPs is to get round the issue of over-specialization and docs not having the full picture or the ability to make connections. But obviously that's an ideal which doesn't always work.
I also think that doctors need to trust that their patients have a clue about what they are saying about themselves. I don't like that I, and plenty of my friends, are treated as unreliable narrators about our own experiences. This does not build trust and connection.
I am not always the most pointed in my arguments. My experience with the breathing thing was relatively minor. It got resolved eventually (basically). But I am also a very strong advocate for my own health. It is something I want everyone to be able to do for themselves (and family members, if need be).
It is definitely problematic that doctors don't want to know the context the patient lives in and whether or not they are even suggesting something that is appropriate/manageable/feasible.
I think it's awesome thath Dr Chew-Graham is doing this work.
(no subject)
Date: 2014-03-14 05:49 pm (UTC)I do think quite a lot of people in your situation distrust the medical profession, and with good reason, because the NHS in general doesn't serve people like you well. And chronic pain is really core to Prof Chew-Graham's research, it's exactly the situation where she thinks a disposing-based system is really failing people, because it's really hard to find a specific medical cause and it's really hard to treat when the pain doesn't respond to the standard medications. Which means that doctors can't "close" the interaction with a successful outcome, and if they're not trained to deal with this they start resenting the patient for not being fixable, which is just all round awful.
The sleep apnea sounds completely miserable, and it's particularly unfortunate that you're not ticking the boxes that would allow you to access treatment for that. Like you say, it's pretty serious, but also really quite treatable (with CPAP) if you can get the docs to cooperate.
(no subject)
Date: 2014-03-14 05:55 pm (UTC)I like brisk and down-to-earth in a doctor myself. I want to be allowed to interact as an intelligent peer, and I don't want to have to handle lots of emoting and concern and trying to form a bond with a stranger when I'm sick or in pain. And certainly it's possible to be a holding sort of doctor and care about life circumstances and emotions without being all touchy-feely and over-emotional.
(no subject)
Date: 2014-03-14 06:00 pm (UTC)I definitely agree that Prof Chew-Graham and her team are awesome, because this work really needs to be done. It's not enough to say that doctors should, we need to understand how to get them to listen better. Some of her work is precisely on giving patients training and resources for being advocates for their health, particularly people who have the kinds of illnesses that doctors don't always take seriously.
(no subject)
Date: 2014-03-14 08:18 pm (UTC)(no subject)
Date: 2014-03-15 11:18 am (UTC)But there's a potential communication or even a respect problem if the doctor assumes the patient's theory is always wrong because the patient hasn't had medical training. With rare diseases especially, a patient who has gone looking for a description that fits their symptoms and experience might well come to a correct diagnosis faster than a doctor who's never heard of or seen a particular condition.
(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.
(no subject)
Date: 2014-03-15 11:21 pm (UTC)Though against the one in a hundred who have correctly diagnosed themselves with a rare disease, you have to balance the ninety-nine who think they have a rare disease but actually have a cold, a headache, or nothing at all...
(no subject)
Date: 2014-03-15 11:26 pm (UTC)Though that is a good point: remembering that the patient's self-diagnosis doesn't make it less likely they have the disease they think they have.
A bad doctor might dismiss out of hand anything the patient thinks they have, effectively treating the patient's theories as having negative diagnostic weight when they should properly be treated as having absolutely zero diagnostic weight.
(no subject)
Date: 2014-03-17 07:42 pm (UTC)I personally have an excellent chance at sometimes-latent seizure disorder that has been appearing more frequently as the past year has wore on. The neurologist I visited smacked the diagnosis of "myoclonic episode with lights as a stimulus", assured me it was distinct from epilepsy, and then disappeared up his own ass. Which has left me with the nagging sensation I would be perceived as whiny, attention seeking, and a hypochondriac if I sought further medical attention for persisting problems.
I do think doctor behavior, particularly when it comes to chronic, non obvious illnesses and diseases, is incredibly salient to how the patient perceives the effectiveness of care, and even their self perception.
I'm not sure that I'm familiar with or educated enough in a medical setting in any context to make a good judgment about what doctoring practice is better, but I do know that slapping a diagnosis on me and shooing me off in the face of a pretty scary health problem has discouraged me in seeking further care.
(no subject)
Date: 2014-03-19 02:17 pm (UTC)Over the last decade I've seen way more doctors than I'd like to have (over 100), about various medical problems and disabilities and stuff. Being a scientist, it's been fascinating how different docs, especially GPs, react to me and my long list of issues - just over a year ago I got a diagnosis explaining many of them (I have conditions A and B. I thought I had A at a very minor level but turns out it's more severe but been counteracted by B which has the opposite effects. And now I'm getting middle aged it's all going a bit ropey.)
There's a characteristic rabbit-in-headlights look I get from medics when they realise that they can't do anything to help, whether it's because the side-effects of the standard drug are too bad, or they don't know how to alleviate A without exacerbating B, or the services they'd like to refer me to wound mean at least a dozen different services all with long waiting lists and none compatible with having toddlers around. Basically they realise they can't really help *and that I know that*.
After that look, the good ones run through what they can offer and ask if that might be worth a go. The others visibly shut off; can't fix, end of, next patient please. Or if I suggest something, respond with Computer Says No. Though the last one who tried that now refuses to see me (after I already refused to see him again), after I pulled the line "Actually, I have a PhD in embryonic neurobiology. What are your qualifications for saying I am putting my baby at risk just because the manual says safety hasn't been confirmed?" on him...
More useful responses have included a referral stating "TK is a complex patient [background] Please attempt to treat whaever symptoms she presents with when she gets to see you", and suggesting trying a new drug with a different mode of action - I asked if Gp thought it might actually work. She said "Fuck knows - medicine is an art, not a science!"
(no subject)
Date: 2014-03-28 10:02 pm (UTC)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.
Huh, this is news to me. In psychotherapy, "biopsychosocial" is how the social justice sneaks in: it is a paradigm which insists that there's more to mental health than remedying biological disease states, that you can't understand where someone is coming from if you don't understand the culture(s) they come from and function in, that ceaseless harms to someone's spirit or community ultimately hurt them physically too.
Not that I disbelieve you. Doctors are profoundly unprepared to cope with the psychological dimensions of health, and it's no surprise -- the way the software people blame the hardware, and the hardware people blame the software -- that when they are stumped or confronted with something that mystifies and frightens them (like an prior mental illness diagnosis), doctors are tempted, and sometimes succumb to the temptation, to throw the problem back over the wall and dust their hands.
I mean, it would be one thing if an MD said, as in a previous comment, "I think this health problem has a psychosocial aspect, so let's look at addressing the psychosocial part."
(I'm reminded that last year sometime I presented at my PCP's office for urgent care -- I don't even remember for what, now -- and the PA who saw me ran through a list of things which might be causing the problem, ending up with a very tentatively, gingerly expressed, "and, lastly, if none of those others test out, we have to look at the possibly that maybe it's a product of, er, stress."
I raised my eyebrows at her and replied, "Lastly? I'm a psychotherapist: I started from the assumption this was psychosomatic.")
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.
Okay, so, like this whole post is something on which I could talk endlessly, but, to focus in on a hobby horse near and dear to my heart:
1) Actually, I -- personally -- could radically improve doctors' holding skills if I were given a crack at them. This, this is what I have graduate level training in. I am a Rogerian. This is what is core to our therapeutic approach. And the thing that kills me it, it would be so incredibly easy to integrate it into doctoring training. The principles can be taught in a tiny number of hours, and after that it's just practice and feedback. It's like the game of go: the basic rules are so incredibly simple, it's "a moment to learn, a lifetime to master". But I've never met an MD, not even a psychiatrist, who has even known how to play.
And, migod, it even works when you do it poorly. It's such an incredibly robust approach. And it patches a critical hole in practitioners' confidence: I have found being a Rogerian means you always know what to do even when you don't know what to do. You don't have to be afraid of not having all the answers any more. Wouldn't that be awesome for MDs? To not have that paralytic, defensiveness-provoking flare of shame and helplessness when you don't have all the answers? Wouldn't it be awesome to be able to still care deeply, to feel terrible for the suffering of patients one hasn't yet figured out how to help, and not have it mean you can't look the patient in the eye? Wouldn't it awesome to be able to be human with one's patients, without sacrificing one's authoritativeness or the patient's trust?
THAT'S WHAT I DO FOR A LIVING. It's not that hard. Intellectually, anyone can learn it. Emotionally, it involves going a bit out of one's comfort zone at first, but that passes rapidly. Frankly the hardest part is getting over the notion one doesn't need to learn it, that one knows everything one already needs to know about interacting with patients.
So, yes, actually, I think every med student on earth should get trained in what I consider the basics of a particular form of psychotherapy.
2) "Actual psychotherapists" need to be actually better integrated into general medical care. I don't just mean that GPs should refer to psychotherapists where indicated, which they should. I mean that psychotherapists should be directly involved in the provision of general medical care where appropriate.
I reasonably frequently show up in person for my patients' psychiatric appointments. I do this to help patients express themselves and articulate their concerns, especially for those who get tongue-tied around authority figures or those who tend to ramble. I do this to alert the MD that the patient is particularly distraught, or needs a particular accommodation that they might not be able to ask for themselves, e.g. I once went in to tell the psychiatrist that their next patient had something very difficult to say to them, and would need some patience to say it: the patient needed to confess that they'd broken their promise to the MD and had used street drugs, and was terrified of the MD's anger. And sometimes, as in that case, I hold hands -- literally -- when the patient has to say something difficult. I do this to elicit information the MD wants or needs for tx that the patient may not divulge or remember if given the third degree by a rushed psychiatrist reading from a diagnostic checklist, because by my extensive pre-existing rapport with the patient allows me in a gentle conversational style very rapidly get into relevant topics. I do this to help the MD break difficult news to the patient, or to make sure the patient takes the news seriously. I do this to help the patient think of questions they might not think of on the spot as they're processing new information, e.g. "What time of day should the new medication be taken? Does it need to be taken with or without food?" And, rarely, I do it to "rat the patient out", e.g.:
MD: "How have you been sleeping?"
Patient: "Doc, I've been waking up like five times a night. It's so hard to get back to sleep when I do."
Me: "Hey, didn't you tell me you were drinking something like a pot of iced decaf coffee before bed?"
Patient: "It's decaf!"
MD: "HOW MUCH decaf are you drinking?!"
Patient: *mumbles*
MD: "Did you just say eight cups?"
Me: "Are those 1 cup measures, or do you mean eight refills of that giant purple tumbler I see on your nightstand when I do house-calls?"
Patient: *slightly murderous look*
^^ Not fictionalized in the slightest.
And that's just psychiatry. It's not like any of these patients are showing up for invasive procedures, and rare that medical-care specific traumas or phobias are triggered.
But ask me about dentistry. Ask me about surgery. Ask me about patients who cannot walk into a hospital without flashbacks, even if all they're there for is to pick up a friend -- to say nothing of having a medical procedure of their own.
These, too, are places that psychotherapists need to go -- places psychotherapists need to be welcomed as consultants on their patients and could contribute powerfully as members of the treatment team.
And not everyone has a psychotherapist they are in the care of (more's the pity): these places should have psychotherapists on staff to handle these things. Someone who can de-escalate very upset panicky people confronting scary procedures. Someone who can work with treaters to accommodate triggers ("this patient needs not to have lights shined into their eyes; this being a pap smear, it shouldn't be a problem, let's just be careful it doesn't happen by accident"). Someone who can help someone process difficult news, and prompt them to recall their resources and coping mechanisms. Someone who can help people who are very angry be heard and respected even if they're not expressing themselves in the most decorous ways. Someone who is paid to take the time to find out what the patient's mental and emotional well-being requires -- because the MD doesn't have the time even if they have the expertise -- and the patient often isn't in a position to know what they need to advocate for, or that they can, or how, or what language to use to be taken seriously.
3) Some of this work has traditionally been done by hospital social workers. The problems are (1) there are more places than hospitals that provide medical care! and (2) social workers are not all trained is psychotherapy, and many (most?) specialize in solving what are fundamentally logistical problems ("who is coming with you? what will you do to prepare? how will you handle this when you get home?") because that's fundamentally what social work is. They are not, as a class, typically trained in how to accommodate people with psychiatric or developmental conditions, or what concerns and issues to anticipate. And they are rarely in a position to that MDs how to do their jobs. ;)
We need more social workers, approximately everywhere in medicine, to help with the "social" part of biopsychosocial -- to be the person who says, "If you're having trouble paying for fish, maybe we can get you financial assistance for that" and "Did you know[*] that your insurance will pay for a cab for you to be brought in and taken home from your chemotherapy appointments?"
[* In the case of one cancer survivor among my friends: no, not until the last session did anyone mention, when they found out he'd been self transporting on the fucking subway.]
So I see the ideal situation a kind of partnership between the MD who handles the bio, the psychotherapist[*] who handles the psych, and the social worker who handles the social. And by partnership, I mean a mutual give-and-take, and three-way consultation, and sometimes everyone in the room together if necessary. Not just "talk to your psychotherapist about that" brushoffs.
[* I'd argue that we Licensed Clinical Counselors/Licensed Mental Health Counselors are the right sort of psychotherapist for this job, but I'm not dogmatic about it.]