Cases that changed me - managing mystery diagnoses (23 June 2025)

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Dr Marilena Giannoudi (MG): Hello everyone, and welcome to another episode of Clinical Conversations, brought to you by the Royal College of Physicians of Edinburgh Bert Cheney and Members Committee. This episode is part of our miniseries called Cases That Changed Me. I am Doctor Marilena Giannoudi, and I am on the Training and Members Committee. And today I'm delighted to be joined by Professor James Dear, who's a professor of clinical pharmacology and a consultant at Edinburgh Royal Infirmary. So good afternoon, Prof. Thank you for joining me today.

Professor James Dear (JD): Good afternoon. Pleasure to join you. Looking forward to having an interesting chat.

MG: Me too. So, this miniseries has been launched so that we can talk with more senior or mature members within the hospitals of cases that have changed them so that we, as more junior colleagues, can learn from them and maybe see how we should adapt our practice. So, I guess I first need to start by asking, is there a particular case that has stood out to you throughout your career, which has really changed the way in which you practice?

JD: Yeah, there's one case that jumps out at me, Marilena, and it partly changed practice, but I think it also highlights some of the challenges that we all face in medicine. So, I think it would be a good one for us to start with anyway. So, it was a case when I was first a registrar, back when dinosaurs ruled the Earth. And I remember the case very clearly. It's one of those cases where you remember which bed the patient was in. It's one of those cases that's kind of burnt on your consciousness. So, it was a man. I'm guessing he was middle aged, and he'd come in with left arm pain and had come through to medicine because there was a question about is this myocardial infarction. And so, he'd come into the Royal Infirmary A&E, and they'd done troponins and EKGs, etc., and he'd come through to the medical unit. So, we saw him on the medical unit, and he was clearly in pain. His arm hurt. There was no history of trauma, but he was clearly in pain. He was also tachycardic and didn't look well as the honest answer. His ECG was normal. His troponin was normal. It didn't really sound like it was from his heart. And there was nothing really to find on examination. His arm examined. Normally. His shoulder was normal. His skin was normal, so didn't really know what was happening. I think already before coming through to the medical unit, he'd seen the orthopaedic surgeons who have said that they didn't think this was orthopaedic problem, and he came into the medical unit. So, there was a degree of uncertainty in his presentation. The next day he'd become more unwell. He was tachycardic. I remember very clearly. I think at this point he may have had a fever and in a lot of pain in his arm, but again, nothing really to find an examination apart from fever. And again, it was not clear what was wrong with him. Blood tests from memory. I think there was probably some inflammatory markers, but not much else. And it was uncomfortable because we didn't have a diagnosis. And then I remember very clearly on, I think probably the third day and maybe slightly wrong on that. He ended up going to theatre and have his arm amputated because he had necrotizing fasciitis. And that sticks in my memory for a number of reasons that it's interesting to discuss, but I think they're around uncertainty. What you do when you don't know what to do. What you do when you feel that a patient who you're looking after as a junior. I'm not saying he's getting bad care, but you as a junior, feel uncomfortable because you feel like there maybe should be more done. Let's put it like that. And also, how you identify those patients who are in the wrong place because he needs to come through with a certain stream, i.e. is this a myocardial infarction? And once that was ruled out, he was in the wrong bed to take that forward. So maybe I'll stop there for the moment, and maybe we can sort of unpick bits of that as we go along.

MG: Yes, please. Let's should we start with dealing with what happens when you know that the patient is in the wrong bed. I think that probably is maybe the best place to start. And then we can talk about uncertainty.

JD: Yeah, sure. Absolutely. So, this is something that's I think probably common to everybody. So, if we leave aside that case, although it's a nice highlight of it, I do general medical receiving. Still, I was doing it last week. And we all know that patients come into, say, a medical bed who should be under a different specialty. And that I'm sure, happens to other specialties as well, that they get patients who should be under someone else. I think one of the most important things there is to recognize that there's a risk associated with that. I'm now a consultant. I'm a consultant for, gosh, coming on 15 years now. And I think the experience that I've gained is to realize that that is a patient who's at risk because you don't know what you don't know when you're managing a disease that you don't normally see. Say everyone was trying their best. There's a risk because you're not picking up the subtleties. I'm sure you yourself work as a cardiologist, are much better at managing heart problems than I am, but unless you're doing it all the time, it's very difficult to appreciate the subtleties. So, we say. Yeah. So, I think the first thing to do is identify risk. I think the second thing to do is to advocate for the patient to get them into the right stream. I think the NHS is extremely good at managing patients who have a clear diagnosis from the start. You know, if you come into hospital with an St elevation mi, your pathway is really clear. You're straight in the cath lab and it's so exciting and you get great care and that's really good. And the same with stroke. If you come in and there's a clear stroke and you're relatively young and you can be formalized, it's great care. It becomes much more difficult when you come in and it's even not clear what's wrong with you, or in some ways, even worse, you go into the wrong pathway, and then you're not getting the optimal care you're getting. Perhaps things miss. And I think it's very important for the doctors who are looking after that patient to really advocate for that patient to be moved to the right team so that they get the care they would have got if they'd been identified immediately. And sometimes you can't identify people immediately, and that's fine. But once it is, it's important that they go into that care stream. So, for the case we started with, I don't blame anyone for not recognizing it was necrotizing fasciitis straight away. That's a rare diagnosis and it was just pain in the arm. But if he had been recognized as being necrotizing fasciitis immediately, then different things could have happened, which I'm only speculating could have prevented him having his arm amputated. We'll never know. But because he went into a different pathway, those things certainly were delayed. Let's say that.

MG: Yeah. In terms of this advocation for patients, who do you think is best doing it? Because I think when you start working, you want to save everyone. And I'd like to think as you continue working, you still want to save everyone. But the actual process of doing that becomes slightly trickier, I think once you're actually in the thick of it. And as much as I think everyone within the healthcare team should be able to advocate for patients, it's not always that simple. And sometimes you do need someone more senior actually saying, no, this is what we're doing. So how do you think we advocate best for patients in these situations?

JD: I think the best way in this specific situation is for senior doctors to speak to senior doctors. In my experience, consultants very rarely are difficult about doing what's best for the patient. I find that very unusual. I find it's more common that at more junior levels, there's barriers put up because people maybe perceive that, you know, they will get into trouble, or it won't be looked favourably if they take somebody. So, I think it's best done at a more senior level, with a consultant talking to a consultant about a certain patient who's under a certain team's care that may be better placed in another place. Now, it won't always be the case that it's obvious which team patients should go to, and that's fine. People are complex, but I think those senior discussions are important so that we basically have clear communication between teams.

MG: Yeah. Okay. So, if we move on from patient allocation, what do you think is the other big thing that we need to take away from this case?

JD: Yeah, I mean I think another big thing from this case is around uncertainty. And I think uncertainty is something that's very common in medicine because often the diagnosis isn't clear. Often the best treatment option isn't obvious. Obviously sometimes time reveals what the diagnosis is. And I think it's about how we as doctors deal with uncertainty. And I think there's two levels to that. I think there's the level of me as I was at the time of that case, and me as I am now. So perhaps if I start with me as I was then relatively very junior registrar, you feel very uneasy. It's very easy for junior doctors. I know that words are not used so much anymore, but you know what I mean. To feel that they're not heard or that their concerns aren't being addressed or to worry. And that can lead to burnout and people leaving the profession. And I think we can all recognise that does happen sometimes. Rarely but sometimes. And I think with that kind of uncertainty and dealing with when you don't know what to do, it is very important, I think, to communicate that to your seniors. I think sometimes maybe you give me your opinion on this. I think sometimes registrars house officers shows I'm using the wrong language completely. But there we go. That's just age. Feel that they shouldn't contact consultants as much. Whereas I think most consultants actually would welcome to be called about someone who somebody worried about, particularly if you don't know what the diagnosis is. So, I think that communication of uncertainty and saying, I don't know what's going on here, but this person's sick is important. I think as a more senior as I am now, I think it's really important to express openly that you don't know what's wrong with this patient. Two diagnoses that I think are really important to make, as well as obviously making the diagnosis. And that is when you don't know what's wrong with them. As I was saying earlier about someone being in the wrong flow. If somebody you don't know what's wrong with them, they're at higher risk. And I think it's very important to identify that you as the consultant, don't know what's wrong with this person, and then think about how we're going to find out and what we're going to do, but communicate that with the team, communicate that with the patient, that there's uncertainty about what's wrong. Because I think that highlights to everybody around that we don't really know what's going to happen. Now, lots of people, you know, they get better and that's good. But some people get worse, and we don't really know what we're dealing with. So, I think communicating the uncertainty is really important. And then it's about within your immediate team, say you on a ward round, it's about listening to what people are saying and basically making an environment where people can make suggestions, because very often somebody will come up with something that's a very good idea. And I think you've got to create an environment where people feel free to just speak up and say, what about this? Because I think quite often people are right and they've had ideas that I haven't because I'm so time limited. I'm opposed to take ward round. So, creating an environment where people can speak and finally, with that uncertainty is going back to the patient and just taking the history again. Because usually or not usually, maybe often there's something in the history that tells you much more information than you had, and it's just that you didn't have the chance just to go back to the beginning and think about how it started. So, I think my sort of take home from the management of uncertainty now is you have to acknowledge it in yourself. This is someone who I don't know what's wrong with them. And also, anyone who's done general medicine will know that. You'll see patients where you're not entirely sure what's wrong with them, but they're well. And, you know, you perhaps ruled out a few big things that you're worried about and you discharge them. But I think with that discharge, you have to be clear to the patient that we don't know what's wrong with you. We don't think it's anything serious but come back if there's a problem or if it changes, come back. Because again, there's a degree of uncertainty because you haven't got the diagnosis and the treatment sorted. So that's my feelings on uncertainty. Just as an aside, I think there was two diagnoses I think it's good to make on a post-take round. One of them is uncertainty and the other one is if somebody is dying and it's completely on the side. But I think it's very important also because I think that defines a different objective to the team. But that's perhaps for another podcast.

MG: Yes. We'll get you back for one on that. I just want to pick up on something that you said about how maybe more junior members of the team may be scared to call the consultants. And I think that's really interesting. And I'd like to think it's not just me, but I think the more junior you are, the more you've been taught that, you know, when you bring somebody for help, you need to have your SBAR ready to have your SBAR ready, you know, to be able to ask for this help and to show that, you know, you've done everything you possibly can for this patient. I think there's this feeling that you need to have done everything. You need to have a working diagnosis, and then you need to say, I'm up to here, but I just don't know how to get to the next step. And I think it's really interesting hearing you say that it's okay to say that you don't know. I think the more senior I've gotten and again, I'm not saying that I'm that senior, but, you know, years are experienced. I do feel more confident in saying, I don't know, but I also know that I've done everything that I can to start ruling out diagnoses to get to that point of saying, I don't know. So I guess my question, in a very long winded way of asking you is when you are the consultant on call, taking calls from more junior members of the team saying, I don't know what are the points in a history or in a case that you really need to know at that time so that you can give advice over the phone when we are dealing in such uncertain cases?

JD: Yeah, that's a great question. I think the key thing here is the doctors probably got objective reasons why they are concerned about this person. So going back to the case we started with, certainly by let's call it day two, the patient was tachycardic. They looked ill grey. They may well have had a fever. So the question was, it's not that I don't know what's wrong with them, it's that they're physiologically disturbed. They're sick. But I haven't got a diagnosis here. And that's what's troubling me, because without that diagnosis, I haven't got a management plan. And so I think to escalate that to probably a consultant. But whoever that is is entirely appropriate. And I think the point you're coming with is there's a patient here who is unwell, as evidenced by X, Y, and Z. However, we don't have a diagnosis. So, the question you're asking the senior person is what is the diagnosis? It's a diagnostic challenge, but it's also about the escalation there because it's kind of straightforward in a way to escalate somebody who you've got a clear diagnosis for. And they are a candidate for critical care and their blood pressures in their boots because of x, y, z. And I know what I'm doing. It's quite a lot more tricky when you've got somebody who you really don't know what the diagnosis is. So, you haven't got a view of what the trajectory is going to be. But you've got that feeling they're sick. So, I think the escalation there when you're talking to the consultant is about here's why I'm worried about this patient. But I don't have a diagnosis. You can say that these are the things we've done, but we don't know what the diagnosis is and what you're asking the consultant there is to essentially help make a diagnosis, because that will guide treatment. And if you can't make the diagnosis, put together a sensible plan and a sensible plan in terms of what are the specialties, perhaps would know the diagnosis, but also what imaging or whatever tests might help you?

MG: Yeah. So, the other question that's coming to my mind based on something that you said, and you said, well, maybe if we've got the diagnosis he wouldn't have had the amputation, but we don't know. And I guess how do you deal with the uncertainty of feeling that you may have missed something? And I'm not saying this personally towards you in this case, we've all been in situations where, you know, a patient has taken a turn for the worst or the diagnosis is unexpected based on what we were working towards. And you're constantly racking your brain; did I do something wrong? Did I miss something? How do I not let history repeat itself? And I guess that fits in quite well with our topic of uncertainty, and I'm just wondering how you deal with that.

JD: Yeah, I mean, it's very difficult, isn't it, Marilena? I mean, we have to be honest. We're all human beings and everybody hates the idea of having made a mistake. And so those cases and there's others that come into my mind now where things have gone wrong and it's been, you know, heart wrenching. And there may have been complaints, and those processes happen. I don't have a magical answer. I'll tell you what I do. But, I mean, I think the first thing to do is you've got to try to be as objective as you can. It's horrible. It feels awful. We all know that. But it's important that it goes through an appropriate process, a governance process where somebody else colleague, not necessarily a friend, but there's some kind of guidance process that looks at the case objectively. If you did make a mistake, then you have to learn from it and to an extent own it. and sometimes it's helpful to actually present the case and discuss it. These are hard things to do because it's not a nice thing to do, but I think it is important to see it as an entity for which you're going to learn from, rather than something that you're going to feel shame about. Because, you know, most cases, the reason the diagnosis wasn't made is because it was hard, it wasn't obvious, and it's not usually the case that it's somebody's fault. It's usually the case that it was a tough case to make. There may have been a series of little mistakes. A series of things came together that ended up in a result that wasn't as good as it could have been. So, for instance, for the patient we started with, they went into the wrong pathway in the hospital, not through anybody's fault, but because the initial question was, is this a heart attack when, you know, you could speculate that they could have been seen and it could have been done a different pathway, but it wasn't a fault. It was the first question that was asked and, you know, probably reasonably had arm pain. He looked awful. That's not an unreasonable assumption. So, I think for me, in terms of when mistakes are made, it's not nice. But I think you have to try to take that mistake, have somebody else look at it and think about what you've learned from it, because it's very rarely that. It's just one person's mistake. It's very much more common that different things came together.

MG: Yeah, I think that's really important. And it's so easy to think that you are that one doctor that only treated that patient and nobody else had any input whatsoever. But that's almost never going to be the case.

JD: No, exactly. It's almost never the case. And it's usually that the system along different ways, things didn't go as they should because that's what I said earlier. You know, the NHS is fantastic when the diagnosis is single organ and very clear because that's the way we set up medicine. You're a cardiologist, you deal with problems of the heart. If someone's got a heart problem and they come to you. They get great care. But people, in fact, can be unclear. They can have multiple problems and that's when it becomes more tricky. But I think patients under the care of the wrong team, patients where their diagnoses are uncertain, are two examples of red flags where you, as a doctor, need to just take a little bit more care, but you have to think a little bit more because I think the risk is higher in those settings.

MG: Of course, from a clinical point of view, because we're talking about this case for how we deal with perhaps non-clinical aspects of care. But I think necrotizing fasciitis is one of those diagnoses that you may go years and years of your career never seeing and just reading in the textbooks or hearing about from colleagues. Is there a piece of advice that you would give to anybody listening that if you see X, Y, or Z, then just have it as a potential differential in the back of your mind?

JD: Yeah, absolutely. I mean, I think the clinical learning point from that and other cases I've seen subsequently is it's pain out of keeping with what you see on the skin. So, you may see somebody who's got an enormous cellulitis, very clear, and they can be hemodynamically quite compromised. They can have raised inflammatory markers, they can have AKI, they may also have some necrotizing fasciitis, and often they're imaged for it. But the more if you like tricky case that is not an uncommon presentation is pain. But because the infection's subcutaneous not a lot to see on the skin. So, fever tachycardia again may have AKI raised inflammatory markers but not a lot to see on the skin. But pain. And that was classic of this case. He was in a lot of pain. But there really wasn't anything to see on the arm. And I think that's where we came unstuck and where experience teach you something to learn. So, what I'd say to people is pain with fever raised inflammatory markers, but not a lot to see on the skin.

MG: Thank you. I guess my final question. I appreciate we've touched on it is I think we've all had those cases where your stomach just clenches, like you see a patient and you don't even need to take the history. You just know they look poorly, and you know it's going to be a difficult case other than just saying, get on with it and trying to give yourself a bit of a boost. How do you advise that we deal with those situations? Because I think it's very easy to talk yourself out of it. It's very easy to say, you know, that I'm doing everything I can, but it's not enough. And I think they're just there, that class of patient that you feel that whatever you do just isn't going to be good enough and you're just waiting for the bad outcome. And I appreciate that. This is all very descriptive because I can't necessarily put my finger on it, but I'd like to think we've all had those patients where your gut is just clenched, and you just don't know how to deal with the situation.

JD: Yeah, absolutely. And I can think of those patients from recent takes. I mean, the first thing to say is everyone has them. I still have them now 100%. So, it's not a thing of being more junior. It's still there now. How I deal with that is firstly, ask other people for their opinions. Usually, you've got some kind of idea of roughly where the specialties are. So, to ask and ask for advice from other specialties, you don't necessarily have to take it, and you don't necessarily have to refer to them, but to ask for expertise from other people and take opinions. I think that's healthy. I think as you get more experienced, you get better at quite quickly determining whether this is somebody who's going to be escalated up to critical care very quickly, or somebody who's going to potentially die very quickly. And of course, we make escalation decisions for patients. Of course we do. But I think with experience you can develop that sense of this person's very sick. This is really quite bad. And I don't think that they're going to survive this versus those patients who are very sick. And there's something reversible that critical care can help with. So, part of that feeling of worry and you're out of your depth and you can't cope is partly with time comes with saying, I think this person's dying. And that's a nice segue back to what I was saying earlier. And that is I find that is quite a relieving diagnosis to make because it changes the goalposts. You say, okay, look, I don't think this is a survivable illness, and then you can almost feel everyone around you sort of relax a little bit more and say, okay, right, well, let's focus on this is the care. Discuss with patients, discuss with the family, focus on symptoms as well as active treatment and wine one down as it becomes more and well that kind of thing. So, I think it's also helpful to early on in that situation have that decision making about is this somebody who's actually this is probably an end-of-life illness or is it actually quite the opposite? Somebody who needs to go to ICU needs to go to theatre, where there's reversible pathology that needs aggressive treatment, so I find that's helpful as well. But to answer your question, there's always those patients and they are difficult. And my advice to anyone listening really is ask for help from, you know, if you're more junior, if you're seniors. But also, I do from other specialties all the time, you know. What do you think to this? I'm not referring you the patient, but I really don't know what's going on. And then also that decision around which comes with experience. Are they somebody who's got a pathology that is going to go to escalate up to critical care because it's reversible, or is what you're looking at a potentially end of life episode? And again, I think that reframing of it can help in diffusing the stress.

MG: Sorry, I appreciate that I keep getting one question after the other. How do you deal with talking to families that you think their loved one is dying when there is no diagnosis?

JD: Yeah, that is a good question. I'll slightly rephrase it. Usually there is some diagnosis that you can put your finger on. It's unusual, I think, to get to that stage where there's no diagnosis. But it may be, you know, sepsis and you don't know where it's from or something like that. So that's difficult. I think it's difficult as well, because I find it's a challenge when you've got the active treatment sort of narrative still going, but it's become clear that the patient's deteriorating and you, together with the family and the patient, have established that there ceiling of care is the bed in front of you. It's not going to be ICU. And I think that's difficult. So, you'll often have these conversations where you say they've got a severe infection and that's what you think it is. And you're treating for that. But they're not getting better as an example, in which case you've got that sort of IV fluids IV antibiotics can still going. But then you're also then going to add in sort of anticipatory care meds and focus on keeping them comfortable. I think that's difficult. What I think the key there is to not see it as a one off discussion with the family, but rather to see it as a moving situation, and to see it as the start of a discussion that you can then revisit a few hours later, as it's become clear that they're getting worse or better, and to see it as an ongoing process. Now that's difficult because we've already all got as much time as we've got. But I think it's helpful to keep revisiting it with relatives. But it's a tricky one. It's a good question. It's a tricky one because it's much clearer when they've got, say, you know, a known metastatic cancer and they've been getting weaker and weaker for weeks. And this is clearly end of life. It's much harder when out of the blue they've come in with cardiovascular collapse. And you're not 100% sure why.

MG: I think if I can kind of summarise what I'm learning from talking to you is that if we go back to the basics, we can't go wrong, and the basics are just to keep talking openly with one another and to say when we don't know, to ask for help and to just keep reassessing. And the more we keep doing that. It doesn't necessarily make the same mistakes easier, but I think it allows us some calm within ourselves that we did everything.

JD: Yeah, I think that's very nicely put, Marilena. I can see you've got a great future in podcasting. And I think as well, to acknowledge uncertainty openly is helpful to highlight to yourself and others that we don't know everything that's going on here. And one thing that you just sort of reminded me of is also to start a treatment, to reassess. Has it worked? Is very important. So very often you see people prescribe fluids or prescribe antibiotics or whatever treatment it is, but then they don't go back and assess has it worked and is it the right treatment. Because sometimes with that uncertainty you try treatment, and it doesn't work. And it's because it was the wrong treatment with the best intentions. So then to switch to another treatment is the right thing to do. So that reassessment of the situation is important. But yeah, I think you summarized it absolutely wonderfully.

MG: Thank you. Thank you very much. So, before I leave you, any final thoughts from yourself for our listeners?

JD: Final thoughts are that medicine is great, being a doctor is fantastic, and as you get more experienced, it changes and not necessarily gets easier, but it does change. You've got more experience, but I think you still face cases that are difficult. You still are going to make mistakes. And I think creating an environment around yourself, both in your own head and around you, where you can speak openly about things you don't know and look for problems. And then when the problems come, find solutions is a healthy place to be.

MG: Thank you so much for your time. Thank you for sharing your thoughts. Thank you for encouraging us all to not necessarily make mistakes, but to own them and to keep talking to one another. And thank you to all of you for listening to us. You can listen to Career Conversations episodes or our Clinical Conversations episodes both on Spotify and Apple Music, and any other podcasting site that you listen to us from. So, thank you so much yet again.

JD: It's a pleasure. Thank you.

The T&MC sister podcast, Career Conversations, supports medical students and trainees with career guidance and progression as well as professional development. We wish to recommend our Demystifying Paces podcast series on career conversations. As some of you may know, in late 2023, Mississippi, UK updated the Paces exam format, so we developed this new series to support Paces candidates. Episodes cover exam organisation calibration every PACES station, including key changes and candidate.