Episode 25: Dealing with Uncertainty – Part 1
Episode 25: Dealing with Uncertainty – Part 1
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Uncertainty can be frightening for patients and doctors alike, but it's an unavoidable fact of medicine in every specialty. In this two-part story, we hear from a GP, a paediatrician, a surgeon and a rheumatologist about how they navigate the grey areas of diagnosis and treatment, and maintain a patient's faith throughout.
In this episode, we examine the culture within the profession and general public that expects nothing less that perfection in medicine—technology that appears to make everything soluble, and pressure on doctors to back their hunches or to be heroic in intervention. We also ask whether hospital training might inadvertently shelter younger doctors from the experience of complex, chronic conditions, and how the simplicity of protocols can be misleading.
In the second episode, we look at the stigma and disorientation experienced by patients with medically unexplained syndromes. While the definition of functional disorders still causes some debate, behavioural strategies for intervention can often have a great impact on the lives of these patients.
Guests: Dr Louise Stone FRACGP (Australian National University), Professor Phil Fischer MD (Mayo Clinic, Rochester, Minnesota), Professor Ian Harris RACS (Liverpool Hospital, UNSW), Dr Rebecca Grainger FRACP (Wellington Regional Rheumatology Unit, University of Otago).
Links to resources relating to this two-part series are provided below. Fellows of the RACP can claim Category 5 CPD credits for listening and reading via MyCPD.
Diagnostic Uncertainty- A Patient Perspective [IM Reasoning]
Risk & Uncertainty [BroomeDocs blog and podcast]
Journal and Other Articles
Clinical Decision Making: Coping with Uncertainty [Postgraduate Medical Journal]
Tolerating Uncertainty—The Next Medical Revolution? [NEJM]
Dealing with Uncertainty: What Lupus Patients Can Expect from Their Diagnosis [Hospital for Special Surgery]
Persistent Pediatric Pain: New Paradigms, Improved Prognoses [MD Mag]
Blame, Shame and Hopelessness: Medically Unexplained Symptoms and the ‘Heartsink’ Experience [Australian Family Physician]
Yes, You DO Have to ‘Live With It,’ and That Can Be a Good Thing [Dr Ian Harris]
The Prince at the Ruined Tower [Dr Michael Lockshin]
Surgery, The Ultimate Placebo [Dr Ian Harris]
This episode was produced by Mic Cavazzini. Music from Transient (“The Earl of Shaffer,” “Vodka,” “Damascus”), Ben Carey (“Calico,” “Ghost Limb”); photo courtesy Shutterstock. Recording assistance from Ryan Smith and Mark Flaherty. Pomegranate Health’s executive producer is Anne Fredrickson.
Editorial feedback was provided by RACP Fellows Dr Paul Jauncey, Dr Marion Leighton, Dr Tessa Davis, Dr Michael Herd, Dr Sherina Mubiru, Dr Pavan Chandrala, and Dr Alan Ngo.
MIC CAVAZZINI: Before we get into today’s podcast, an announcement from your producer and host, Mic Cavazzini. First, thanks for listening. Pomegranate has now been running for two years, and built an audience of several thousand. To try and reach more listeners, we’re renaming it Pomegranate Health. Although physicians of course won’t need reminding of the fruit’s place on their College crest, or its therapeutic properties according to ancient myth.
If you like what we’re doing, please send it round to your colleagues. And we’d love for listeners to get more involved, so the website now has a discussion panel below each story that allows College members to make comments. And if there’s anything we can do better, or topics you’d like us to cover, then please send us an email at firstname.lastname@example.org.
Now, to introduce today’s story about coping with uncertainty, over to Dr Louise Stone from the Australian National University.
LOUISE STONE: Way back when in Celtic times, if you had some sort of fit you were told to be afflicted by fairies. Because apparently if you tread on a fairy ring, after that you can have a fit or a stroke or something along those lines.
MIC CAVAZZINI: Welcome to Pomegranate Health, a podcast from the Royal Australasian College of Physicians.
LOUISE STONE: Now, afflicted by fairies was probably a bit of a big catch-all bucket, so you could pretty much categorise most of your patients in that bucket. But the greater the specificity of the diseases that we have, there’s more patients that don’t fit. So I think over time the uncertainty is going to get greater, not less. And I think that’s not intuitive.
MIC CAVAZZINI: Uncertainty can be frightening for patients and doctors alike, but it's an unavoidable fact of medicine in every specialty. In this two-part story we hear from a GP, a paediatrician, a surgeon and a rheumatologist about how they navigate the grey areas of diagnosis and treatment, and maintain a patient's faith. We’ll look at the culture and processes that have contributed to an intolerance of uncertainty, starting with Professor Phil Fischer from the Mayo clinic in Minnesota. He sees many adolescent patients at the end of a long and frustrating referral chain.
PHIL FISCHER: Most of the patients I see as outpatients have systemic general problems touching multiple body parts, so they’re fairly undifferentiated when they come to me. They don’t have a good diagnosis, either good for the doctor or good for the family. Typically a patient will come to us a year or so into their diagnostic odyssey with persistent deterioration during that time. I haven’t counted up, but I would guess there’s an average of at least eight or 10 different doctors they’ve seen along the way, so we’re often seeing people toward the end of the line where they haven’t got it all together, and they don’t really have any hope. So we’re kind of the last hope after a lot of effort.
LOUISE STONE: The ones that stick with you I think the most are the patients who you’re sure there’s a disease around the corner, and you just can’t find it. They trigger in you concern. And despite the negatives you are anxious, and then they’re anxious, and then you get more anxious, and they get more anxious, and it becomes this vicious spiral. When you can’t diagnose and you can’t manage and you do feel helpless, it’s an awful feeling. Particularly when you’re watching the patient suffer, knowing that there’s very little you can do.
I think the thing about these patients is that they often come to you as the third or fourth or fifth or sixth GP, they’ve often gone around the traps. The bugger is when you get what Balint calls “the collusion of anonymity,” where you’re sick of the patient and so you send them to someone else until they get sick of them, and then they send them to someone else. So no one in the centre is coordinating, and no one is, the old fashioned term, was “owning the patient.” And frankly they spend their whole life in waiting rooms and that just changes the way they see the world, and then they become quite unwell.
MIC CAVAZZINI: And after they have been to one specialist after another, do they sometimes stop coming back to you, the GP?
LOUISE STONE: Yeah, absolutely. And we also get that problem of course of medications that get miscommunicated, and you end up with patients on three different anti-hypertensives all doing the same thing, and then you end up with the iatrogenic illness and so forth. I think that idea of coming back to base, whoever that base may be. And it may be me, it may be their geriatrician, but somebody who can hold the threads just so the patient doesn’t get lost in this whole network.
PHIL FISCHER: Some patients come with frustration after seeing lots of other doctors. One of the things I found that’s most useful for my patients is I let them know that I will be their doctor. So it would be as if I’m saying, “I’m the Mic Doctor, I’m not the Mic’s Head or the Mic’s Belly or the Mic’s Leg Doctor, I’m the Mic Doctor. So I can’t just take care of one piece of you, but I need to take care of all of you.” And that seems to help a lot of patients.
When I see them I often involve several other specialists to help me out, but that’s to give me input, rather than for me to pawn them off onto somebody else. It is a privilege to be able to be that more holistic generalist. On the other hand it’s a lot more difficult, because that means I’m not done until the patient’s getting better.
MIC CAVAZZINI: We'll focus on so-called functional syndromes in the next episode. But let's begin by examining the cultural reasons we expect nothing less than definitive diagnoses and guaranteed treatments. Professor Ian Harris of Liverpool Hospital has written about this in his book Surgery, The Ultimate Placebo. He says that the problem starts with the urge to treat just to feel like one is being useful.
IAN HARRIS: So my name’s Ian Harris, I’m Professor of Orthopaedic Surgery at the University of New South Wales, and I’m a clinician who’s in practice in Sydney.
MIC CAVAZZINI: There was an article in the New England Journal by Arabella Simpkin, where she says, “Being uncertain instils a sense of vulnerability in us,” and I wonder if that’s a fear of losing the patient’s faith in the doctor, or the doctor’s fear of losing faith in medicine, in its reliability.
IAN HARRIS: Yes, I think that there’s a natural intolerance to grey areas in humans. We have an aversion to uncertainty. Doctors falsely see this as a failing, because they think that unless they’re providing an intervention that they’re not treating the patients. And there’s this conflation between medical interventions and medical care. And you can care for someone very well without necessarily intervening. And probably on the other side, on the patient side, they’re falling for the same trap. They see everything as having a clearly identifiable unambiguous source that can be identified on a scan or a blood test, and can be addressed, and specifically targeted by a medical intervention.
LOUISE STONE: I mean, there’s a fear that you’ll be the one who misses the obvious, according to the coroner, carcinoid or whatever, that was obvious once the autopsy was done but wasn’t obvious to anybody beforehand. There’s always that fear. Six percent of our patients have rare diseases that we might see once, or never, in our career. Of course we’re very worried that we’ll be the one who misses something from the patients. And I think the more junior you are the more worried you get.
As you get older I think what changes is that you become more confident to wait, to watch and wait and review. You get to know the ones who are deteriorating and really sick and you need to jump fast, and the ones where you can wait and watch and see what emerges over time while you manage symptoms.
MIC CAVAZZINI: Another thing that Arabella Simpkin writes is that “we train students to put their money down on a diagnosis”—that you’ve got to back yourself and take a punt. Do you think this pressure to resolve everything is part of your training, that you’re told everything can be resolved by a systematic process?
LOUISE STONE: Yeah, absolutely. Absolutely. We humiliate them when we don’t find diagnoses, don’t we? We think they should be able to come up with some sort of framework.
IAN HARRIS: Yeah, it’s the way we’re trained. So that’s why most doctors live under that paradigm, and that’s what gets disseminated into the public and on popular TV shows and news articles—that everything has a clearly identifiable cause, you just have to keep doing the tests until you find it. And so it’s much easier, particularly in my field of surgery, just to see everything, pun intended, as cut and dried.
MIC CAVAZZINI: In fact you say in your book, “I wish it was acceptable for us to say to a patient that they have a diagnosis of unexplained back pain that they cannot currently cope with, rather than a ruptured disc or whatever other finding we lift from the MRI report. There is always something in the MRI scan.”
IAN HARRIS: There is.
MIC CAVAZZINI: Why is it unacceptable to say nothing’s showed up?
IAN HARRIS: It seems unacceptable, but I don’t think it is. The patients want an answer. And they come in because they’ve already read their MRI report, and they’ve seen the two pages which list abnormalities. And they’re distressed, because not only do they have a ruptured discs and some facet joint hypertrophy, or degenerative this or that. They’ve got a lot of different things, and any one of which could be causing their pain, but most likely none of which are necessarily causing their pain.
And I get this a lot with doctors where they say, “Oh, what are we supposed to do? Are we supposed to just do nothing?” Exactly. That’s exactly what you’re supposed to do. You’re supposed to explain to the patient that what they’ve got is non-specific back pain which would not benefit from further investigations, which is unlikely to put them in a wheelchair or make them crippled or need walking aids, or significantly progress. It puts it in perspective and it’s reassuring. And it’s often enough for patients to go away happy and able to cope on their own.
MIC CAVAZZINI: And you say that not treating someone is interpreted as doing nothing. Is there a strong stigma against this conservative approach?
IAN HARRIS: Yeah—“That’s what we’re here for, we’re surgeons, we should be operating, if we’re not operating we’re not treating.” There’s a stigma against it, and there’s also arguably a legal bias against it as well, and I was taught this when I worked in the States, is that you’re always better off doing something. Because if you said, “No, I think the risks of surgery are too great,” then the patient dies anyway with non-operative treatment, it’s kind of like, “Well, you didn’t do anything, you didn’t even have a go, you know, you weren’t very heroic.”
PHIL FISCHER: That’s a hard one, to do nothing, because we’re trained to be active and to cure. And this is a mindset. Because we’re sometimes as physicians thinking we’re supposed to look good or always be right. What I hear from patients more is that they want their physicians to be trustworthy. And there’s a difference between perfectly right and being trustworthy.
I think of a talk I gave once, it was about a particular medical problem that I wasn’t really up to date with all the details of the problem. So I started my talk saying, “I don’t know everything about this particular medical problem, but I do know something about kids, so let’s talk about kids.” Afterwards somebody came up to me—a parent—and said, “I wish my doctor knew as much as you did about this problem.” That vulnerability actually engendered trust, and trust has to be authentic. And if we come across like we know everything and the medicine’s always perfect, that will probably make us untrustworthy and potentially wrong.
But I think there’s also a cultural shift as we’ve moved toward more technology. Culturally, especially when medical visits are crunched for time, people want to get a number, they want to get something objective, and then decide based on that. And we have to admit that we don’t know all the answers. We have to connect with the patient. That means I need to have them trust me, but I also have to be willing to follow through on things.
MIC CAVAZZINI: It’s also been suggested that the systematic nature of protocols and clinical trials contributes to an illusion of simplicity. The patients that walk into the clinic are often much more complex than those selected for research studies, so the physician is left with the difficult decision as to whether they fit the same diagnostic criteria, or will experience the same benefits of intervention.
This is par for the course in rheumatology, says Dr Rebecca Grainger, consultant in the Wellington Regional Rheumatology Unit. She also researches self-management through the University of Otago.
REBECCA GRAINGER: When I discussed with my colleagues this interview, we all laughed that rheumatology is the discipline of managing uncertainty. When you look at our diagnostic criteria— most of them, although they look rigorous, are not easily applied in clinical practice to all patients. Historically some of the diagnostic criteria require, for example, radiological changes. But radiological changes can happen late in disease. So what do you do for that window of early disease, before anyone would expect the radiological changes to have appeared?
The other aspect of developing diagnostic criteria for clinical practice or classification criteria for clinical research, the gold standard that it’s usually compared to is “a rheumatologist said it was the disease.” And this sort of tautological approach is always a source of amusement for me. And it does just illustrate the uncertainty we face in rheumatology, that there is usually not one diagnostic test that clearly makes the diagnosis.
So if you take—for example, there’s been a huge emergence of new therapies for rheumatoid arthritis, and therefore lots of clinical trials. We now have fairly rigorously developed classification criteria, so that we have some degree of certainty that everyone enrolled in those trials indeed has the disease, and typically they’re 70, 80 percent rheumatoid factor positive. But within that, they’ll have a wide variety of joint involvement, and different degrees of systemic involvement. And at the end of the day we are describing a phenotype. We are not describing the underlying biology of the patient. And so we’re really lumping together a disease that may be quite biologically diverse.
LOUISE STONE: Firstly, it has to be a disease big enough to get a protocol, which of course many of these difficult diseases aren’t. Secondly, we’ve got to recognise that all the patients in the protocol have one disease, they’re usually in tertiary hospital networks, they’re usually not Aboriginal or Torres Strait Islander, they usually don’t live in the country, they’re over 18 and under 75. So all those elements that combine together. And an RCT or a meta-analysis is designed to create the best average. It’s not designed to create the diversity. And I guess evidence-based medicine is always about finding the available evidence and then applying it to this individual who is in front of you, and I think—
MIC CAVAZZINI: —so who knows what fraction of patients actually fit that rarefied sample—
LOUISE STONE: —who knows what? Who knows what?
MIC CAVAZZINI: In one of the BMJ journals, West and West say that there is too much reliance on protocols “because they absolve the clinician who follows the protocol correctly.” But these create a false sense that everything can be reached by a decision tree, yes or no. Whereas the opposite extreme, the dirty option, is to pass all the responsibility onto the patient. And while “this form of shared care remains fashionable,” they say “it is in reality an abrogation of responsibility. Something has gone wrong with the clinical relationship where clinicians quote figures, survival rates and probabilities of side effects at their patients.”
LOUISE STONE: I think that’s an interesting question. One of the other things I tell my registrars is that autonomy is on a spectrum. You know, personally, if I’m unconscious, I don’t really want an anaesthetist waking me up and asking my opinion about which anaesthetic I’m going to use, you know. I want them to just be the doctor and do the job. We don’t talk about that much anymore, because it’s seen as patriarchal.
But I think it’s very patient-centred when a patient says, “What do you think doctor?” or “I don’t know any more, it’s all too hard and too complicated”—to be able to be brave enough to stand up and say, “This is what I think.” And that’s not taking away power if the patient is begging you to take that power for them.
Particularly in paediatrics. Patients tell me when a child is critically ill they actually don’t sometimes want to make that decision, they want to put their faith in someone and not think, “If I’d only made the other choice, if I’d only”—you know. I find that very hard. And I don’t think it’s discussed clearly about when you need to be the patriarch and stand up, and stand in for the patient when the patient’s not able to make a choice. It’s a very difficult place to be.
PHIL FISCHER: I think those are very insightful comments, and I agree, it’s a total abrogation of responsibility to think that I can present statistics and facts to let a family decide, because there’s always interpretation involved: which facts do we use, which statistics relate to a specific patient? But with new data, new interpretations, I think we have to be open to carefully re-evaluating what we’re sure of, and we can bring parents into those kinds of discussions. Between we can say, “These are the facts, these are how they might apply. I would probably do this, others might do that, let’s talk about it.”
If I give all my responsibility to the protocol, then I’m giving away my responsibility to be a doctor. I have to see how it applies. On the other hand if I say, “The protocols are silly, I’m just going to decide myself” then I’m at risk of missing something that the protocol might have prevented. This is a balance. We’re balancing between extremes to try to do what’s best for the patient. So I think especially in the times of technology and protocolised care, we have to make sure we’re still training the young physicians to be able to develop a relationship, to deal with this uncertainty, to explain things in a human, personal way, and to work through it with patients.
IAN HARRIS: So yeah, but I think having guidelines does make things appear more cookbook, that is perhaps a problem with guidelines. But it depends on what the guideline says. And again, it’s a guideline, not a rule, because I know of guidelines that guide us away from over-investigation. And the patient should be taking more of an active role in the decision making that affects them. Because I’m uncomfortable with the moral hazard of the doctor making all the decisions, but the patient taking all the risks.
There was a funny story from years ago when orthopaedic surgeons started treating a lot of tibia fractures with internal fixation, with surgery. It was routine and we’d just recommend surgery for all of them, it’s kind of easier to manage, and the results are pretty good. And then in a room of orthopaedic surgeons, they said “Well, if this is your tibia fracture, would you have surgery for it?” and none of them said yes. And so there is a problem when the person in control and the person with all the knowledge makes the decisions, and not the person who’s affected by those decisions.
MIC CAVAZZINI: Another reason young physicians might be sheltered from some challenging diagnoses, is that training takes place in a hospital environment, where inpatients are on the acute end of the spectrum. While acute conditions tend to have specific cause and a discrete fix, chronic conditions can ebb and flow in the grey zone for years. Dr Rebecca Grainger once again.
REBECCA GRAINGER: As students are learning they rotate through different teaching units, and they’ll only ever be with one discipline for maybe four, six, eight weeks at max. So they also don’t get to experience the natural history or unfolding of the patient’s journey. And therefore they can’t see how the uncertainty is managed expectantly at each time point. And I think that’s very hard to teach without perhaps embedding patients in the curriculum.
MIC CAVAZZINI: And going back to that distinction between acute and chronic presentations, an American rheumatologist, Michael Lockshin talks about lupus, that symptoms like the butterfly rash or arthritis can point to several different diseases. Some people have symptoms but negative test results, others are found to have abnormal lab tests but no symptoms, and all of these can fluctuate over time. Is that typical of many conditions in rheumatology?
REBECCA GRAINGER: To a greater and lesser extent, yes. I think you’ve hit on the best example. Some patients I see are for the first time—whom I diagnose with lupus, I have made the diagnosis before they walk in the door on the basis of the laboratory evidence that’s presented to me. Those tend to be the more severe end of the scale. People who have less severe lupus, they can be more challenging to diagnose, because there is an overlap with some of the chronic pain conditions, for example fibromyalgia. And my approach to that clinically is actually to share my thought process with the patient, and explain to them why I am uncertain, some of the symptoms that could be due to lupus, and that we want to revisit their management with them when and if those arise. It’s very often safe to take an emergent approach, as long as you’ve clearly negotiated with them how you’re going to monitor them, who is going to be responsible for the monitoring, and what is likely to happen if the monitoring indicates that the disease process is changing.
MIC CAVAZZINI: And another point that Michael Lockshin makes is that the patients rarely see how much disagreement there might be between doctors while discussing case studies. Do you think it would benefit the public to see the kind of debate that goes on at a grand round, or would it terrify them to see how much disagreement there was?
REBECCA GRAINGER: Yeah, I’ve thought about this, and actually I share the uncertainty and the fact that a patient’s case may be discussed, and I really frame it that I’ve got very well esteemed colleagues that I work with, and do I have their permission to present their case? And these are some of the key points that I am uncertain about, and this is what I want to seek my colleagues’ opinions on. And I actually think it really helps for them to know that there are a number of people considering the challenges in their diagnosis or management. We aren’t perfect, we don’t know everything, and I think the peer review and discussion of cases is also invaluable to the physician managing the patient, because those kinds of discussions can expose cognitive biases that the clinician is not aware of.
IAN HARRIS: I completely agree. And it does surprise people, even in surgery where things are seen as fairly clear, there’s commonly disagreement. And I think for the public to know that things aren’t that clear, and that doctors are divided in their opinion as to whether you should have this kind of special chemotherapy, or that kind of injection, or this kind of new supposed wonder drug, that there is actually debate about it, and not everyone thinks that this is a great drug. I think that would be very healthy.
MIC CAVAZZINI: Again, going back to the NEJM, and Arabella Simpkins suggests we should speak to patients about hypotheses rather than diagnoses. Could that possibly change the expectations of certainty?
IAN HARRIS: Yeah, that’s an interesting—yeah, so that introduces uncertainty into it I think. Yeah. I haven’t read that article, but I will after this.
PHIL FISCHER: I think it’s a good idea. I word it a little differently with my patients. So I’ll say, “This is what I think is going on, and I think this because of this, this and that reason, and I’m fairly convinced.” And then I’ll say, “But it doesn’t really matter what I think, we want to know what’s going on, so this is what we’re going to do to really find out”—and then we’ll talk about whatever tests are appropriate. So calling it ‘thinking’ versus ‘knowing’ is ‘hypothesis’ versus ‘diagnosis,’ we’ll never have 100 per cent diagnostic certainty with most of the problems our patients have, so I think we have to make it clear to the patients what we know for sure, and what we’re thinking is most likely, and what’s the rare, dangerous thing that could still be possible that we have to check out. I certainly don’t have to get an MRI on everybody with a headache just to prove that it’s not a brain tumour, because there are signs to make a brain tumour more suspicious, and we have time to work through some other things initially.
So I’ve gotten comfortable with my uncertainty. I’ve gotten comfortable saying I don’t know some things. Maybe because I’m 61 years old, maybe because I’ve had five children, I realise that I can’t know the future, and sometimes we just have to work progressively through a situation. So I think there are some personal factors amongst doctors and amongst parents, as well as the patients, about how much uncertainty we’ll accept. And I think there are a couple of pieces that we can help with that. One is to free up doctors to take on this role, if they want it. But the second part is to let the doctors work in a structure where they can do it. We’re structured where I am so I have time to see the patients, and then I network with a whole team, so I can get others involved from any medical or surgical sub-speciality, psychologists, social workers and others. The more alone a doctor is, the more challenging it is to take care of these patients.
MIC CAVAZZINI: That was paediatrician Phil Fischer from the Mayo Clinic ending this episode of Pomegranate Health. Please listen to the second part of this story to hear about guiding patients through uncertainty, especially in functional syndromes that are sometimes contested. Thanks also to Louise Stone, 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 resources mentioned in this podcast or to claim CPD credits for listening visit the website racp.edu.au/pomcast. Remember you can subscribe to the entire series through any podcasting app, and members can now leave comments on the webpage for each story.
I’m Mic Cavazzini. Until next time.