LOUISE STONE: Diseases operate on a bit of an ethical hierarchy. If you have no diagnosis at all in the community, then people wonder if you’re a malingerer or you’re just complaining, it’s harder to get services, it’s harder to get—you can’t get a disability pension easily without a diagnosis. So all sorts of things are predicated on this idea of diagnosis, even the specialist you pick.
MIC CAVAZZINI: That's GP Louise Stone from the Australian National University, talking about the impact on patients of chronic symptoms with no medical explanation.
LOUISE STONE: You know, if I had to pick one of the top five diseases I most don’t want to get, motor neuron disease is up there. And I remember diagnosing a patient when I was still fairly young in general practice and they went “Oh, thank goodness, I knew there was something wrong.” And that was really a moment in my career where I started going, “What on earth? How do we set this up so that a patient would rather have motor neuron disease?” The security was better for them than floating round in the ether.
MIC CAVAZZINI: Welcome to Pomegranate Health, a podcast for physicians of the RACP.
I'm Mic Cavazzini, and this is the second part of a series about dealing with uncertainty. In the first episode we looked at how an intolerance of grey areas has emerged in the medical culture. Today we'll discuss how to manage a patient's expectations through uncertain diagnoses and treatments. But first, let's start with the baffling functional disorders and medically unexplained syndromes.
LOUISE STONE: Okay, so my name is Louise Stone, I’m a GP. I guess I developed an interest in medically unexplained symptoms fairly early in my career in country practice, and I conducted my PhD in this area. And this is a condition that is always on the agenda, that GPs are always concerned about, and we always end up discussing. And I think we need to recognise just how anxious patients are, because they are in a bit of a narrative hole. They don’t have a name, they don’t have an explanation, they don’t have a story to be getting on with. And when the person down the pub says “What’s wrong with you?”—there’s no answer. It’s a terribly uncomfortable space to be in. It’s awful, isn’t it, that we—that suffering is in this sort of hierarchy. That unless it’s been labelled and packaged by us, the patient is not legitimate in some way. It’s not fair.
PHIL FISCHER: Hi, Phil Fischer, I’m a general paediatrician at the Mayo Clinic in Rochester, Minnesota. I’m involved with complicated patients that come from around the United States, some from other countries, to pull sometimes mystery diagnoses together. Many of my patients are frustrated when they get to me, because nothing’s been identified. So I think the key is how I explain it to them. One point is to tell them the test results are normal, and then tell them what we’re going to do. Which is a very different message rather than saying, “You’re normal,” so then they think, “Is it all in my head, or what’s going on?”
The second part of it is how I frame what we’re looking for. Because I explain to patients that there are structural problems and there are functional problems—“hardware and software,” “phone and app,” would be the idea. If it’s a structural problem, we can find the anatomy or the biochemistry that’s wrong, and then we can try to fix it. But there are many problems in my patients that are not structurally identifiable, but there’s clearly a problem.
So I think there’s some functional disorders that have more been accepted as if they were structural, and we mentioned some of these. Migraine headaches, irritable bowel syndrome, fibromyalgia, those are usually accepted as real, because they’ve been classified and they’ve been around for a long time. Chronic fatigue, postural orthostatic tachycardia syndrome, those are similar but somewhat perhaps less widely accepted, functional problems that are equally real. If we go beyond the regular science to the fringe of science, then we’ll have lots of other labels for things, whether it was chronic mononucleosis, or Lyme disease, or chronic hypoglycaemia, or hypothyroidism, or adrenal weakness. So people have put different organic labels on some of the functional problems, when there’s really no evidence that there is a structural problem there.
MIC CAVAZZINI: In fact in Australia there’s been a big palaver recently about chronic Lyme disease, which is controversial enough in its own right, let alone in Australia where the bacterium and the vector have not been identified. Do you think that people clutching to diagnoses like Lyme disease is more acceptable or tolerated than, say, a diagnosis of chronic fatigue, because of that organic brain versus body distinction?
PHIL FISCHER: I think it comes in part, as you’re suggesting, from the notion of: “If I can put a bacteria label on it, then it’s real and it’s acceptable and it doesn’t mean I’m a weak person.” So I think we have to overcome that. People sometimes will say the same about depression, as if depression’s not a real problem—“Strong people don’t get that.” So I think there’s sometimes a stigma with having a psychologist involved.
LOUISE STONE: Absolutely. Absolutely. It’s why patients will—it’s pretty rare that patients come in saying “I have a mental illness” first up. They’ll usually come in with something physical first, because we’ve trained them that way. I’m sure one day that rheumatologists will come up with something clever around fibromyalgia, but it won’t be all the patients, and the gastroenterologists will come up with something about irritable bowel syndrome, but there’ll still be a cluster of patients who predominantly are psychologically unwell. I just don’t think it’s quite as neat as it’s either-or.
The worst of it is that the more tests you do of course, the more positives you’re going to get, just from a statistical point of view. And the more positives you get, the more garden paths, and then for those patients then it entrenches them in this idea there must be something wrong, and if I was House I’d find it. So patients often put this incredible load on you, and I don’t think we’d be human if we didn’t get frustrated.
The worst outcome is that we get angry with the patients for refusing to get better, despite us putting in all this effort and all this energy. I mean, the frustrating thing is if we don’t have a solution, there are plenty of other solutions out there. The danger in that of course is there’s potential for harm, and we certainly have a number of patients in Australia for instance who are going off to Germany for the $60,000 admission for Lyme disease treatment with hyperthermia, so overheating patients, at the same time as giving large doses of antibiotics over a long period of time. It’s not harmless.
MIC CAVAZZINI: Well, yeah, that contested nature of it—the Lyme Disease Association advises patients to go and see a “Lyme-literate doctor.” And that immediately creates this adversarial nature to it.
LOUISE STONE: Absolutely.
MIC CAVAZZINI: And how can the average physician compete with the doctor that will tell the patient what they want to hear and write them the scripts that they want to write?
LOUISE STONE: Yeah, we can’t, can we? Patients talk about this. So in the literature they say that it’s almost like a court of law. They’re made to feel bad even though they’ve done nothing wrong. Their notes follow them round like a criminal record. But increasingly we’re getting patients with contested illnesses who are coming in with a sheaf of paper printed off from Dr Google. I don’t think it’s much different to the patients who you talk about their smoking, and they say “My grandmother smoked until she was 103 and it never did her any harm.” You’re not going to persuade that patient by telling them that they’re wrong, you’ll just get into an argument and it will get you nowhere. You’ve got to find the middle ground somewhere without backing back from your own principles. So I will say to patients, “I understand that you’re unwell. I understand what the evidence in medicine—that is my field—I can only advise you on medicine, this is what medicine has to say about that”.
Now, you know, we may turn around the magic Australian Lyme disease tick next week for all we know. Certainly some of these patients are behaving like infectious diseases. But again, what is the influence of suggested symptoms? Patients will overload the idea of anecdote. And patients, if they get joint pain and fatigue and rash, they don’t necessarily understand that that could fall into a million buckets of diagnoses. They see that everyone else in this community has joint pain and fatigue and rash, and therefore they belong, they’ve found a bucket. And they see that some of these patients have benefited from certain things that we are not making available to them.
MIC CAVAZZINI: Mental health disorders like depression and psychosis have lost some of their stigma with the emergence of plausible organic explanations. And anxiety and post-traumatic stress are accepted by many as being the result of maladaptive learning where, the brain has mis-associated cues that were previously innocuous, with emotional and physiological alarm responses. According to Professor Phil Fischer, functional disorders involving pain and fatigue could come down to similar programming errors therefore treatment must rely on a behavioural approach.
PHIL FISCHER: Sure, if somebody gets a traumatic experience, whether it’s an injury or they get beaten up, people tend to accept that, “Of course it was so traumatic I had a psychological reaction.” When it’s just a normal thing—diarrhoea, pain, whatever functional thing got started, people tend to be hesitant to admit that psychology would help them.
But I think we’ve over-separated the mind from the body. I assume that if the patient says it hurts, it does hurt. That validation is helpful to get them ready to work with me; it helps build that therapeutic relationship. Not meeting them to just cry with them and stay sick, but to meet them and move forward.
The other challenge in adolescence is that some of my patients have been physically down for years by the time I see them. These are those years of life when they’re developing their sense of adolescent identity, and some of these patients have taken on their disease, their symptoms, as part of their identity. So we have to deal carefully with that, because I’ve had some patients tell me they’re too scared to actually get better. I’ll often, as I finish my consultation with patients, I’ll have written down all the diagnoses, all the plans on the back of a sheet of paper, and then I’ll write down—I say, “Now this is the most important diagnosis.” And at the top of the paper I’ll write something like, “Fantastic young woman.” I’ll say, “This is your real diagnosis. Don’t get stuck into all these things that are going to go away. You’re going to get better and you’re going to live life.” So we have to be pretty careful that we don’t let the functional label leave them impaired, so we have to keep moving them toward functional restoration.
LOUISE STONE: If they’re complaining of heart pain, listen to the heart. You may have an ECG that’s normal, and an echo that’s normal, and everything else that’s normal, but if you don’t listen to the heart, patients are never going to believe that you understand what’s going on. You have to actually put your hands on the patient; you have to examine the patient. Validation is acknowledging that the symptoms are real and that they’re very distressing, and they are doing the best they can.
If you can put it into patient’s words, it often also contributes to that validation. So if patients say “I’ve got this band-like headache,” or “I’ve got this burning pain in the pelvis,” then it’s always good to say, “So if we look at your burning pelvic pain, patients with burning pelvic pain tend to have a few things going on, which could include A, B, C, D, E.” I talk a lot about strategies for chronic pain, for instance. Some strategies work for some people, some work for others, and see it much more as an experimental thing—“Oh, that didn’t work, well, we might try this.” Because if you are too solid on those things, what you’ll find is patients will fail and then they’ll give up.
So I often open it up very early with all my patients to at least ask, “What was going on around the time that you got sick, where you under any particular stress, what sort of stress?”—so that the word ‘stress,’ which seems to be more acceptable than anything else in our culture at least is in the conversation. So it’s not going to the end of your reasoning and then saying, “I can’t find anything therefore it must be psychiatric,” which is a disaster. I think that’s a truly functional explanation, where you’re saying, “In your circumstance I think that if we were able to lower the stress going on in your life in every sense, that’s going to help your general health.” And I talk a lot about general health so that we get the stigma out of it.
PHIL FISCHER: It’s very helpful for people not to focus on their symptoms, but to focus on positive function. So we talk about extinguishing symptom behaviours, extinguishing pain behaviours, not to talk about how their leg hurts or they’re so tired, not to grimace and not to limp, but to get rid of all those behaviours, physical activities that are based on pain. If we can get rid of those then we’re not going to be recycling and training those nerves to keep going to experience the pain, but we’re going to be turning the mind to the positive.
Physical exercise, especially aerobic exercise is critical, partly to use the nerves and muscles for positive healthy things. The other part is reconditioning. Studies even of our fatigued patients show that about two thirds of them are de-conditioned. Relaxation-related treatments are often useful—the diaphragmatic breathing, very useful for abdominal pain and nausea, because it reroutes the altered nerves with normal diaphragmatic breathing. I lump that with cognitive behavioural therapy. Also good if they have some anxiety or fears related to their symptoms.
MIC CAVAZZINI: And you described a trial of anti-headache pharmacotherapies in the New England Journal, and they were actually less effective than placebo?
PHIL FISCHER: That was a stunningly impressive study, I think January of this year, that looked at chronic headache in children, adolescents, comparing amitriptyline and topiramate, and showed roughly that 60 to 65 per cent of children had significant reduction in headache with either amitriptyline or topiramate. The difficulty with the study, and the good part of the study was placebo and medication seemed to have about the same positive effect, but there weren’t as many side effect patients with bad outcomes on the placebo. That’s a pretty phenomenal outcome.
Previous placebo effect studies say placebo helps about 30 percent. And I don’t know what part of the placebo helped. Something about being validated in a research study with regular visits from a research investigator nurse following along, there’s something about that doctor-patient relationship that can be therapeutic that goes far beyond the details of what medication or treatment they get.
MIC CAVAZZINI: Whether we're talking about functional disorders, or chronic conditions in more traditional fields of medicine, treatment is itself often uncertain. The clinical outcomes of intervention are far from guaranteed; therefore success cannot be the only benchmark of patient satisfaction. Even in the seemingly black and white field of orthopaedics, managing patient expectations is all important, says Professor Ian Harris of Liverpool Hospital the University of New South Wales.
IAN HARRIS: We do have to have common goals. And we did some interesting research looking at patients after tibia fractures, and another one looking at patients after joint replacement surgery. And we asked the surgeon to rate how successful knee replacement surgery is, and by and large they’ll say it’s a successful operation, it’s a common operation, we do a lot of them. But when you ask patients how much better their knee is since the surgery, patients are often painful; it takes them a long time to recover.
Now, some of that is tied up with expectations, and we know for instance that in Australia the expectations after treatments are very high. And to stick with the knee replacement example, there was a nice piece of research done comparing UK to centres in Australia and in the US. And what they found interestingly was that the Australians stood out because of their expectations. And we interview patients now, and by far the majority will say that they expect to have no pain, normal function, and no limitation to their activities. And so some of those patients are not going to be very happy when they don’t get that.
I think there’s a problem, and I don’t know whether it’s what society has geared them up to expect, or whether it’s the maybe lack of information they’re getting from the hospital and from the doctor, or the misinformation. But I think that there’s a responsibility for us to make sure that patients know what they’re signing up for.
MIC CAVAZZINI: And one-on-one with your patient, when you’re asking them what they expect out of the treatment, how can doctors better tease out the concrete real life expectations, rather than this imaginary 100 per cent?
IAN HARRIS: “You’ll be fine,” yeah. You know, we need to inform them better. And ways that we can inform them better are with things like decision aids, you know, “On average the patient after this procedure will have this, these are the likely risks.” It can be presented in a way that is easier for patients to understand—using pictures, using figures of people with two out of the hundred coloured in. But secondly, we need to ask them what they want to get out of it. And that can be very revealing.
PHIL FISCHER: That, I think, is one of the key issues that I deal with every day. Somebody has defined satisfaction as “when experience is better than expectation.” So we want to say we’re going to manage the satisfaction by making the experience or the outcome better, but in fact sometimes we have to make the expectation be more appropriate. So one of the first things I do is, when I’m meeting a patient with chronic symptoms, is to ask what their goal is for coming to see me. And then I dissect that down a little bit, because if they say they want to figure it out, or they want to feel better, I push them a bit and say, “Is that enough? Do you just want to be smart and comfortable?” I’ll even light-heartedly say, “I can make you feel fine this afternoon. It requires general anaesthesia and you’ll be useless to the world, but you’ll feel great.” That’s much different than saying, “Our shared goal is to get you into school, back with your friends, hanging out on the weekends and doing fun things”—it gives us that shared goal that’s much more useful.
REBECCA GRAINGER: My name’s Rebecca Grainger, I’m a consultant rheumatologist based in Wellington, New Zealand. In my academic work I work at University of Otago, Wellington, with some of my key research interests being self-management and how we measure in clinical practice and research.
So I think managing patient expectations is extremely important. What I do there is clearly negotiate from the outset what I am and am not able to do for patients. So be very clear about that. And also to focus very much on what’s important to the patient. Very often patients will have roles that they want to be able to complete. Some of those are things like “I want to be able to play with my grandchildren,” or “I need to stay in paid employment because I have financial responsibilities for my family.” And I think then you can move the emphasis from managing the symptoms to maintaining or regaining function.
For example I had a patient yesterday, a gentleman in his 70s, who was a very keen home handyman. And his main goal was to be able to continue to do those home handyman activities. And he added, as an afterthought, being pain-free would be a bonus. So he had clearly stratified for me what his goals were, and therefore I was able to frame my discussion of the diagnosis and the management options very clearly with his goals in mind.
MIC CAVAZZINI: Dealing with inconclusive outcomes is frustrating for both patient and doctor. Patients need to learn coping strategies with the help of the entire health care team. And doctors have to keep their eyes open for novel developments down the track. A tricky moment in the relationship can arise when you have to tell the patient that you've done enough tests, and there's no point continuing to investigate. How do you convince a patient you're not just giving up on them? Ian Harris once again.
IAN HARRIS: Yeah, it’s not that hard, because you just explain to them, “Look, I’ve done your scans or your blood tests, and I haven’t found anything concerning, and there’s nothing that I would find with any further tests. So I think that what you’ve got is not a serious condition, because I’ve ruled that out. What we’re going to do is just leave you alone for a little while, see how things go. Come back and see me in three or six months, we can always pick up where we left off, and look at things again later. But at the moment, if we subject you to endless tests, it will increase your frustration when we don’t find anything, or it may lead us to find something that is not necessarily causing your pain, but something that we will address anyway, which will have associated costs and harms.” And this is what I see all the time. I see patients who have been investigated for months and months for conditions which really aren’t that bad and that they were coping with anyway, and conditions that aren’t going to significantly change the course of their life.
MIC CAVAZZINI: So you’ve written about how when you tell a patient that you can’t do anything about their back pain or their joint pain, the response often is “So I just have to live with it, do I?” It’s almost an accusation that medicine has failed. So when there is no treatment, and you do have to tell the patient, “Yes, you do have to live with it”—what’s the message that needs to be taught to patients about coping? You refer in your writing to the disability paradox.
IAN HARRIS: Yeah, that’s right. I mean, if we were asked to rate the quality of life of somebody who was dependent on walking aids or in a wheelchair, or had had a stroke with an arm weakness; we would rate their quality of life as very low. But when you ask the person who is in the wheelchair, or the person who has a certain condition, they would often rate their quality of life as not very different to yours, because they are still able to enjoy social interactions and gainful employment, and leisure.
So yeah, it is interesting. And yet we have someone with mild intermittent back pain, and they are completely dissatisfied with their current status. So that needs to be put in perspective so that they can also adapt. And it needs to be made clear I think to patients, that by building their own resilience, using their own coping, and taking a more active role in dealing with their own problems can be beneficial to them. Because there is a tendency to sort of farm out that responsibility.
REBECCA GRAINGER: I really try and encourage people to a mindset where they’re looking, “What aspect can I actively manage?” And really I usually present a menu. And discuss the pros and cons, the costs, the time involved, the patient’s preferences, and go through a shared process where the patient can pick something from that menu that they’re going to work on. And that is very often when I bring in some of the allied health team, who are more able to directly support the patient in achieving those functional goals. Is there a role for physiotherapists, occupational therapists, psychologists?
I also often have a conversation with people about the realities of modern medical practice. We are very good at treating disease. We are not that great yet at making people well. And by teasing that out for people, they can understand that there’s actually a space where they are the best person equipped to move from absence of disease to actually being well.
LOUISE STONE: Often these patients, if they didn’t start off with a mental health concern, by the time they’ve had unexplained illness for a year, they’re starting to get demoralised and they can’t work an they’ve got a disability of whatever sort, they’re starting to get depressed, or anxious, one or the other. What I usually encourage the registrars to do though is to very consciously change hats. Because one of the tendencies is to throw the baby out with the bath water and just say, “No, I’m not going to make a medical diagnosis, there isn’t one.” So I always say that it’s their clinical responsibility to make a presumed diagnosis, or at least exclude the ones that matter as best they can. And to definitely make a psychiatric diagnosis. You know, psychiatric diagnoses aren’t perfect but if you don’t follow a psychiatric protocol you’re going to miss the shameful ones. So make sure you put that hat on, and at least do it once. And keep an open mind—because blow me down, some of these patients will come back with an autoimmune disease the following year.
One of the things that the doctors mentioned in my study was this idea too of not getting caught up in the mental health stuff too heavily. And this doctor said, “What I try and do is every six months I put up like a bit of a physical health periscope, and I have a look around.” And his suggestion, which I think is a good one, is get a registrar or a medical student to do a full case history, because sometimes you miss the constellation of symptoms because they’ve come in over time, and you haven’t put the constellation together. Or sometimes some positive test—I had a patient with depression who eventually turned up with hyperparathyroidism, and I thought, “Yes, there we go,” of course treated the parathyroids, and didn’t solve the problem. And I think that’s the other thing—a positive organic diagnosis doesn’t always cure the patient.
MIC CAVAZZINI: That was GP Louise Stone ending this two-part series of Pomegranate Health on dealing with uncertainty. Thanks also to Phil Fischer, Ian Harris and Rebecca Grainger for their contributions. The views expressed are their own and may not represent those of the Royal Australasian College of Physicians.
To find some of the research discussed in the podcast or to claim CPD credits for listening, visit the Pomegranate website at racp.edu.au/pomcast. Members can now leave comments on the webpage for each story, so we’d love for you to add to the discussion. You can also send us feedback via the email address you’ll find there or join the conversation online using the hashtag RACPpod.
I’m Mic Cavazzini. I hope you’ve enjoyed the program.