Dr. Mariam Hanna:
Hello, I'm Dr. Mariam Hanna, and this is The Allergist, a show that separates myth from medicine, deciphering allergies and understanding the immune system. In the 1970s, a woman with a suspected lump in her breast would undergo a routine one-step procedure. The patient would be anesthetized, and the lump sent for biopsy. If malignant, the breast would be removed. The patient's partner would be informed of this for their permission, while the woman remained anesthetized. The woman would then wake up from surgery only to discover if she had one breast or two. In the years that followed, data revealed that modified radical mastectomies, and in many cases, lumpectomies, were just as effective and less disfiguring. The decision had been made on the table. The partner and the surgeon made it. The woman was under anesthesia. No options, no discussion. This was not the 1800s. This was just 1970.
The history of medicine tells an important and, at times, dark part of our practice. With the advancements in the field of allergy and immunology, while some therapies have shown clear superiority, there are also emerging therapies where, for now, the data just seems less clear. There's this enthusiasm to lump it all as shared decision-making. The mistakes and triumphs that were made should help guide the path to a better future. Shared decision-making is now in every part of our practice, right down to what flavor of antihistamine the patient would prefer.
Today's topic is about shared decision-making. Today's speaker is passionate about the topic, and not necessarily in the manner you would expect. Allow me to introduce my former program director, Dr. Michael Cyr. Dr. Cyr is an allergist and clinical immunologist and assistant clinical professor at McMaster University. He also practices in the community in Burlington, Ontario. Dr. Cyr completed internal medicine and allergy immunology training at McMaster University. There, he was the training program director for more than 10 years for pediatric and adult allergy and immunology. He also sits and continues to sit on these training committees. He's a previous recipient of the CSACI John Toogood Award, a national award for excellence in teaching. And with that, I introduce Dr. Cyr. Welcome to the podcast.
Dr. Michael Cyr:
Thank you very much, Dr. Hanna. It was a very nice introduction. Nice to speak to you.
Dr. Mariam Hanna:
Okay, let's start with some definitions. What is shared decision-making?
Dr. Michael Cyr:
Well, shared decision-making, it's fairly self-explanatory, but it's sharing in the decision with the patient and the treating team. It's not a new concept. It's been around for decades, literally decades. But it was really the example that you brought up that was a pretty vivid example of something that no one's eager to go back to. And the understanding that really patients need to have an active role in the decisions they take. So that's essentially what it means. It's just bringing the patients into the decisions that we make from day to day.
Dr. Mariam Hanna:
Okay, that's a perfect way to start it. So then why is this suddenly important today? Why is it such a buzzword right now?
Dr. Michael Cyr:
Yeah, that's a great question. The answer is I have no idea what's changed. Literally, if you look through the number of citations, this really was proposed in the early eighties, and really by bioethicists, just saying that we need to actively involve patients in decisions. They put out this paradigm. If you look at the citations over the last several decades, they haven't really budged very much. It's been a low activity. And in the last four years or so, it's really just exploded. And now, every single talk I go to, there's a discussion about shared decision-making. It's either the main topic or at least it's mentioned multiple times. So there's something that's been quite trendy about it for sure over the last couple of years. One of the things that I always find interesting is it's often brought up in the context of this new, exciting thing that we're doing.
It's often suggested, or at least implied, that this is something we've never done before. So you'll get someone who comes up and says, "We're treating patients for asthma, for example. We do this new thing called shared decision-making. We talk to our patients about what their goals are for treatment. It's a really new, revolutionary thing. I know you older physicians have never done this before, but it's something you should look into." And I've always thought, I'm pretty sure we've done this for a long time. This is not a new thing. So I think because it's a trendy buzzword, people look at it a little bit strangely because we've all been doing this, I think for the most part, for decades.
Dr. Mariam Hanna:
Are there times when we're misusing shared decision-making?
Dr. Michael Cyr:
Well, what I've noticed over the last couple of years is how this expression has slowly morphed a little bit. Where I'm starting to see it used is almost to say that there's good evidence, but we've decided to ignore that good evidence, which always makes me a little bit nervous. So they'll say, "This patient has bad heart disease. We talked about ways to prevent heart disease. We did shared decision-making. We elected that they could keep smoking." And then I'm always like, hold up. What did you decide? That's a weird decision. There's pretty good evidence against that decision. And it almost seems like we're blaming the patient for a decision that's really not medically sound. It's like the pendulum has swung the opposite way. Before, which I think we can all agree was a problem, physicians were making all the decisions potentially many years ago and not really involving the patient at all. Now, we're basically saying to the patient, do whatever you want. I have no input in this decision at all, which I think is really a disservice to our patients. So I think that's where it's starting to be misused a little bit.
Dr. Mariam Hanna:
So does using shared decision-making exclude us from using evidence-based medicine practices? Is it one or the other?
Dr. Michael Cyr:
Well, clearly it's not supposed to be. So if you read the initial descriptions of shared decision-making, it is quite reasonable. And it just says, yes, you should apply the best available evidence you have and then get the patients to help make that decision. I trained at McMaster for internal medicine. My first faculty when I did general medicine was Gord Guyatt, and he was our program director as well. So we were heavily steeped in the Gord Guyatt, Dave Sackett evidence-based medicine approach at McMaster. And what I learned early on was you apply the best available evidence to a problem. Now, sometimes you have large randomized trials, sometimes you don't, but whatever's the best available evidence, you apply it to a particular problem. And then you take the patient's preferences, goals, and values, and between the two of you come up with a decision, or whoever's on the treatment team and the patient come up with a decision. And that is evidence-based medicine. So of course, shared decision-making is supposed to include the patients, but it also has to have the evidence-based medicine behind it. You can't just have the patient pick whatever they want without any suggestions as to what's the best available evidence out there.
Dr. Mariam Hanna:
But sometimes I will lay out, there is option A, B, C, and they don't like any of those because they've done their own research. So what happens when the patient just doesn't listen to A, B, C? These are the options that are available. "Doctor, I would prefer to watch and wait and see how this goes."
Dr. Michael Cyr:
Well, it is a challenge. When you think about evidence-based medicine, there's the classic pyramid, the hierarchy of medical evidence. So at the top, you have large systematic reviews of good, well-done randomized trials. That's at the top of the pyramid. And then you work your way down. Just a single RCT, well, that's good evidence, but it's not as strong as a systematic review. A case series is evidence, but it's not as strong as a randomized trial. And then as you go down, you get into anecdotal reports or just your own clinical observations in the clinic. That's anecdotal. It is evidence, but it's not strong evidence. And then at the bottom, well, it used to be at the bottom, was expert opinion. Expert opinion, okay, it's nice, but it's not really evidence. I would propose that there should be a layer under that, which is "I've done my own research."
So that's really something that's come up over the last few years where patients come in and you say, "Well, there's a large randomized trial that said you should do this." And they're like, "Well, actually, I've done my own research, and I think the opposite." And initially, I was pretty excited when patients would tell me that. I said, "You've done your own large randomized trial? That's fantastic. Tell me how that went." And of course, well, I mean, my research is I looked at TikTok for 20 minutes and I found out that this causes this or this is a side effect of this. And so that's a challenge. The problem is those patients come in often very convinced. Even though there's that hierarchy of evidence, the lower levels of that pyramid are the ones that are most persuasive to patients. A good anecdote, we all know, is very persuasive.
That is how we're persuaded always. And so if a patient heard that their neighbor's mother had a reaction to something, it's very difficult to say, "Well, the randomized trials show that's very low risk." So that's part of the art of medicine: really describing what the evidence is and making it believable so that patients can buy into it. Because often they've come and they've formed opinions that aren't really valid. And so that, to me, is the real art of being a doctor or being a healthcare professional, is to try to translate the best available evidence to the patient. A good example that we've had is vaccines. Vaccines used to be not the most controversial thing in the world, but they became controversial during the pandemic. And patients will come and say, "Well, I've heard that if you get the vaccine, they're going to put a transmitter or a GPS something into your bloodstream." So because they've heard that and they've seen it, to try to change those ideas, it's definitely, as you recall, not easy to do.
Dr. Mariam Hanna:
Can you share some tips as to how to broach that? What is your way of tackling this?
Dr. Michael Cyr:
Well, again, talking about, first of all, knowing the best available evidence, that's a trick, right? And that's not easy to do. It's not easy to keep up on the evidence. So knowing what all their alternatives are and what the risks and benefits of each of those options, I mean, that's the key starting point. This wouldn't be shared, even though I rail against sometimes how the shared decision-making term is used. It is a good example where a very rational person may pick very different treatments based on their goals and preferences and values. So, for example, some patients may think of biologics as a great idea based on the type of symptoms they have. And as you know, in allergy, we often see patients who have multiple allergic diseases. So you may be talking about treating their asthma, but you say this specific asthma treatment will not only help your asthma but will also help your eosinophilic esophagitis or your atopic dermatitis.
So bringing in the whole patient and all their concerns can be helpful. And then really discussing, again, people are, I think, quite rightly worried about adverse reactions and adverse effects of medications. But again, putting them into perspective is really important. You could say yes, the risk is one in a hundred thousand of having this adverse outcome, but that's a fairly low risk compared to the other risks you're taking from day to day. And again, so putting that in perspective can be very helpful. One thing I've learned over the years and we've seen is patients are very bad, and so are we in general, at understanding risk. In general, our risk perception is very poor. And so people will think, well, one in a million, that's a very high risk. I don't want to take that treatment. And then you can say, well, listen, did you drive your car to the clinic today? You did. Okay, well you took a much higher risk than that driving. So understanding the risks that we take every day can be really helpful in putting that in perspective. So when you're talking about benefits and risks, sort of trying to weigh them, and there you're taking out what are the things you want from their treatment? Is it, is your most important thing controlling some of your symptoms? And if so, which ones? Or is it your fear of complications down the line? Are you worried about airway remodeling? Some patients may be very worried about that. They have family members that have had bad outcomes over time. Some patients may not be worried at all because they've never heard of long-term complications of poorly controlled asthma, and that's part of your job as a physician to say, if you don't treat your asthma properly, bad things can happen. So helping them navigate that is, I think, the art of medicine again.
Dr. Mariam Hanna:
So navigating risks and benefits requires a lot of framing from the physician, and we all have biases going into these kinds of discussions. How do physician biases, do you think, come into play with these shared decision-making discussions where we're trying to help them navigate this list of pros and cons, risks and benefits, and how can we address that?
Dr. Michael Cyr:
I think that's a great question and it's one that I find really interesting. I think it's important to remember that our patients all have cognitive biases, but so do physicians. The key is to know that they exist and to be able to recognize them as best you can. It's really easy to recognize them in other people. It's hard to recognize your own biases. There's a book, Thinking, Fast and Slow, I think it's called, by Dan Kahneman, and it talks a lot about cognitive bias. They won the Nobel Prize for looking at biases in people. What we've learned is people really are not great at making decisions. Of course, we have the System 2 way of thinking, which is deliberative and careful and well-thought-out, which is what we hope to do as physicians. But that takes a lot of time, energy, and effort. That's not how we make most of our decisions. Most of our decisions are gut feelings that we make very quickly without really much thought. It usually works, but sometimes it doesn't work out very well.
One of the cognitive biases I see the most in patients and physicians is confirmation bias. So basically, you have this feeling that you think this particular treatment is very good. For whatever reason, you think it's a good idea, or you really strongly want it to work, you want this new treatment to be effective. So what you do is you decide it's good, and then any evidence that's available that suggests it's good, you believe that evidence. Any evidence that suggests it's not as good as you thought, you dismiss it summarily. Obviously, that's not a good way. You shouldn't start with the answer and then build your evidence, right? If you're a good scientist, you look at all the evidence and then come up with your answer. So it's important to remember that patients do that all the time, and physicians do that all the time.
I remember going to a conference, one of our Canadian conferences, and there was a new treatment available. The speaker gave a really passionate discussion about someone having anaphylaxis. It was a really powerful anecdote and we're all like, wow, that's really horrible. We really want to prevent anaphylaxis as best we can. Then later in the talk, he talked about a systematic review that suggested maybe the treatment available had its downsides, including increasing anaphylaxis by quite a bit. He dismissed that very quickly. Then he went back to the anecdote about how important it is to prevent anaphylaxis. To me, that's a bit of an example of how we really want something to work. As physicians, we want it to work. Sometimes when there's evidence that suggests what we're doing isn't great, we dismiss it a little bit and keep plunking along and trying to make things work. We have to recognize it in ourselves and it's much harder to recognize in ourselves than in our patients.
That's one of the most common biases I see. But if you look at it, ER docs are pretty good at this, at learning and understanding cognitive biases. It comes in for diagnosis quite a bit. There are many that we can go through, and I think the important thing is to remember we're all prone to some of them more than others. So if you can recognize the ones that you are prone to. For example, there's an optimism bias. That's one that I tend to have to be careful about. So we just think things will probably work out. Things should work out pretty well. But that's not always true.
Dr. Mariam Hanna:
Oh, I like that one too. Oh, is that bad? I like that one.
Dr. Michael Cyr:
It can lead to making mistakes. It can lead to you ignoring red flags that are there. So we all have these biases. They're normal to have, but you should be able to recognize which ones you may be a little prone to so that you can fight them. And then helping your patients see that's what they're doing is also helpful. And it's easier to point out in some people than others, but knowing that they exist, I think, is the key part.
Dr. Mariam Hanna:
Can you give us ways to incorporate shared decision-making while recognizing our biases and really hearing our patients, knowing they face different challenges?
Dr. Michael Cyr:
I think, to me, taking your time, it goes back to old-school medicine: listening to the patient. Usually, when they have really strong feelings, what they're really trying to tell you is what are their priorities, what are the things that are most important to them, or what are they most afraid of? And then, once you have that piece of information, you can go on to say, okay, these are the options available. Based on what your preferences are and what you're most afraid of, this is probably going to fit your treatment the best. It depends on the disease. There are some diseases where the treatments, the different options, really are very similar as far as efficacy but have different side effects. Some are easier for some patients or more difficult for other patients. So there are some where shared decision-making really lends itself very nicely. There are other times if a patient comes in with bacterial meningitis, I don't know that you want to have a long decision-making discussion about using antibiotics versus oil of oregano or something. There are times where, as a physician, you are going to make some strong advice. The patient is the one who makes the decision, but you really need to get in there.
But there are lots of times where, as you said early in the interview, the decision's not that clear. Actually, as physicians, we really have to be honest. Is one of us right? Is one of us wrong? Is there not enough data to really tell us what's the right thing to do? Usually, in that case, it's because there's a big gray zone there. Sometimes it's because, as physicians, we're putting in our own biases without realizing it. A good example is for oral challenges. We do oral food challenges in the clinic. There would be times where I would think we should do an oral challenge, and the resident would think, no, we shouldn't. I would say, well, what's the risk? What's the pretest probability this person is going to have a reaction? Sometimes the resident will say, well, if it's a 10 to 20% chance of risk, then we're obviously not going to do it. I wouldn't even bring it up to the patient because that's too high risk. We'll never want to do that. I said, well, how does the patient feel about that? Is that a high enough risk or too high risk? Because some patients may say, a 20% chance of risk of anaphylaxis or a 20% chance that I'll pass is great. I'd love to do a challenge if there's a 10 to 20% chance I'll pass. I won't need my EpiPen anymore. I won't need to avoid these foods. They'll love it. Other patients with those exact same odds will say, forget it. I'm not touching that. Why would I do that? I'll just avoid it and carry an EpiPen. Both of those are completely reasonable things to do. If you put it to the patient, different patients will have different answers, but sometimes we don't even give those patients those options because we see it as so obvious what the right answer is. It really makes you think about it: how are you making the decisions, and how do you best bring the patients in and really, honestly, give them what their options are?
Dr. Mariam Hanna:
Give them what their options are. It's almost like you knew exactly how to end it. That's perfect. Alright, time to wrap up and ask today's allergist, Dr. Michael Cyr, for his top three key messages to impart to patients and physicians on today's topic, shared decision-making. Dr. Cyr, over to you.
Dr. Michael Cyr:
Okay. So first of all, from McMaster, I've got to stick with it. You have to know the best available evidence, and that's the key. If you have very good evidence to do something, that takes precedence over anecdotes. So know what the best available evidence is. That's number one. Number two, there's shared decision-making. So I tease people about it, but obviously, it's very important. Once you know the best available evidence, then you have to bring it to the patients. First of all, that there is a choice. Second of all, what are the options? And third of all, it's your job as a physician to navigate each of those options. What are the risks and benefits? So that's number two. Number three, acknowledge that we're not going to get it perfect. There are going to be times where physicians and patients don't always see exactly eye to eye on what the best decisions are. It may take some work and it takes a therapeutic relationship. It takes time. There are some patients you're going to have to see again and again, but be patient. And I think the key thing is you can't ruin that therapeutic relationship or you'll never be able to help those patients.
Dr. Mariam Hanna:
A perfect way to end. Thank you, Dr. Cyr, for joining us on today's episode of The Allergist.
Dr. Michael Cyr:
Thanks very much.
Dr. Mariam Hanna:
This podcast is produced by the Canadian Society of Allergy and Clinical Immunology. The Allergist is produced for CSACI by PodCraft Productions. The views expressed by our guests are theirs alone and do not necessarily reflect the views of the Canadian society. This podcast is not intended to provide any individual medical advice. To our listeners, please visit www.csaci.ca for show notes and any pertinent links from today's conversation. The Find an Allergist app on the website is a useful tool to locate an allergist in your area. If you like the show, please give us a five-star rating and leave a comment wherever you download your podcasts and share it with your networks. Because in navigating the gray, it is important to be patient with our patients. Thank you for listening. Sincerely, The Allergist.