Episode 37: Fostering shared decision-making in primary care

Dr. Caroline West:        

Hello and welcome. I'm Dr. Caroline West, I'm a GP and also a medical advisor to NPS MedicineWise. Now, when it comes to our own health, getting involved with shared decision making can make a real difference. Often choosing wisely, all starts with asking the right questions. RACGP President Dr. Karen Price joins us today to share her insights. Are we getting better at speaking up and asking questions? How do we get started if we're lacking confidence and how do we train the next generation of health professionals to lead the way? Thank you for being with us, Karen.

Dr. Karen Price:    

A pleasure, Caroline.

Dr. Caroline West:   

Now, these days we hear a lot about shared decision making and healthcare, where the consumer gets involved in the direction of management options. In reality, how much of this do you really think happens in a busy general practice?

Dr. Karen Price:   

Well, I think there's probably some degree of variation and that will depend upon the way the practice is structured. It'll depend upon how long that patient has seen the doctor, where they've got an existing relationship. And it will depend upon probably the doctor's age and also the patients age, and that patient's ability to even feel confident enough to ask a question of a doctor.

Dr. Caroline West:  

And so, does this often happen over multiple visits or is it possible to sort of insert shared decision making even in brief consultations, do you think?

Dr. Karen Price:    

Well, for me, look, I've practiced over a couple of decades and so I've always enjoyed having that longitudinal relationship with patients. And so, for me, a shared decision-making process is a much more rewarding, professionally. I always encourage my patients to question and to ask questions, and to make sure they're clear on whatever treatment discussions we've had. So, it does involve, firstly, informing them and maybe even bringing them back after they've read some material or how to think about things, to actually go through what might be the next treatment decision, which way they want to go. So, it's informing them that it's not necessarily hard and fast, of course, in emergencies that's quite different, but for many of us now, we are dealing with chronic health complaints. And even relating this to the current news of the day, COVID vaccines. The best way to manage vaccine questions and vaccine hesitancy is to go through a shared decision-making process.

Dr. Caroline West:   

And I guess in general practice with that respiratory illness situation, with COVID being at the front of everybody's minds at the moment, but a lot of people will be coming in and still going, they don't have COVID, but they've got bronchitis or something else. And there's often a bit of consumer pressure to then have another solution, "It's not COVID, can I have some antibiotics?" And I guess that the shared decision-making tool can really come in handy when you're trying to reshape that conversation as well.

Dr. Karen Price:              

Shared decision making certainly needs trust, and it needs some time. And I have found the use of decision aids. I went through a trial with Bond University, and they actually presented some decision aids on antibody use in bronchitis, which are really great infographics for patients to understand that this was a condition that they really didn't need to use antibiotics in, and what the expectations of the illness progression were. And that really helped my conversation with them. It helped them have something to anchor upon and to think about, when they went out of the consultation room. So, that was a very useful process to go through.

Dr. Caroline West:         

I think that's exactly right, giving them information and often reinforcing that message over multiple consultations so that it's expected, if they have a respiratory infection, that's a viral infection in nearly all cases that in fact antibiotics might be appropriate. And they're okay with that.

Dr. Karen Price:              

So, what can happen too, is they can go home, and they might get a lot of pressure from family or friends. "Oh, you what? You didn't get antibiotics? You better go back. And go to my doctor, they always..." So, there's all these competing issues. So, I always invite them, "If you've got questions or you're concerned that you're getting worse, come back and see us, and we'll go through this again and make another assessment." So that's just safety, and that consultation now, of course, in a time of COVID, there are various clinics who may not be able to see their own patients at the moment with respiratory illness, but I'm talking in general terms, of course, about how we reassess bronchitis.

Dr. Caroline West:         

And so, what you're also talking about, in a way as patient by and where you're including them, encouraging them to ask questions, you're providing information and listening. How do we actually build that patient engagement in a broader sense in a consultation?

Dr. Karen Price:              

Look, it takes a lot of time to do that. As a doctor, I think you are always assessing the patient about their ability to understand the message, what their actual  consultation agenda is. We've got the doctor's agenda, we've got the patient's agenda, and then we've got the whole business of getting what we need done. And that will vary. And I think there's a level of comfort that some patients find with certain doctors. And so that's okay. Not everyone measures. I think it's really important for patients to make sure they've got someone they feel they can talk to. So, if you feel a bit too intimidated to ask questions, that would be a concern to me, if my patients ever told me, "I was too scared to ask you." That is something that would concern me, because those questions are extremely important. And it is a shared journey. It's the patient's health journey, not mine. And I'm there to advise and help and make sure they make appropriate decisions, that first do no harm to them.

Dr. Caroline West:          

And is there a generational context here that young people are getting more health literate, because they're getting access to a lot of social media, which pings around lots of information? Is that a trend that we're seeing?

Dr. Karen Price:              

I don't think that's necessarily true in one way, they're getting a lot of information, it's being able to sift and sort that information. So, I've watched my own children who are young adults now and their friends. And I would have to say their ability to digest that information is reasonable, but some, of course, can go down non-evidence-based pathways believing that there's some other means to treat things, or preferring what they say is a more natural way of treating things, which is probably not against any doctor's armamentarium of treatments. But it's a certain challenge to us if they're refusing what they may need in favour of a non-evidence-based treatment. So, there's really complicated discussions to have with younger people. And they come in armed with lots and lots of information that may not always be accurate. With the older population, they're more inclined to want you to make the decision for them. And so moving that generational shift is a really important pathway of managing your patients.

Dr. Caroline West:          

Yeah. I think that's a really good point. And it's not just age groups that we need to consider that may have different preferences, but culturally, and from an education point of view, if somebody's got fairly low levels of health literacy, it might be hard for them to digest large amounts of information, and jargon is just going to go over everybody's head. So, I think doctors can sometimes fall into that trap of using jargon, rushing through things.

Dr. Karen Price:               

I have got patients who are university professors who are really keen to hear the evidence and I've got patients who are highly anxious, have a heavy burden of anxiety. And that means my approach is entirely different, even though the IQ might be the same. Or I've got patients who don't have English as a first language. And so, my approach is very much patient centered. So, this is not about giving out the same approach for the same disease, because no disease is the same in any one person. We don't see the disease; we see the person who has come in with a presentation. And I think that's a really important point that I hope most doctors are approaching their patients that way.

Dr. Caroline West:         

And we've touched a little on social media and I know that you are into social media as well. You tweet away, you actually very kindly tweeted your support for the Choosing Wisely 5 questions. For those people listening or consumers who are not across, what Choosing Wisely does, it's a global initiative that really helps to improve the quality and safety of healthcare. And they've put together these five questions, which I think are a fantastic template for really having a conversation around your health management. And to just remind people, if they're not across the five questions they’re things like, "Do I really need this treatment? What are the risks? Is there something simpler and safer I could use? What happens if I don't do anything? What are the costs?" What sort of difference do you think it makes having something like that to act as an actual prompt?

Dr. Karen Price:              

I think it's a brilliant initiative and I hope patients are using it as much as possible. I think it helps frame it, that their healthcare, that they're in charge of it, that they've got an ability to influence how things go. And to hopefully be fully informed when they make those decisions, so that they are making a rational and an appropriate decision. Because as I said there's lots of information, not all of it accurate. And the other thing is to make sure that we do no harm as practitioners. We don't want to be giving people treatments that may be not necessary, that maybe with the passage of time, mother nature is a great physician. In many undifferentiated presentations, you might want to use one or two or three consultations to see how the presentation progresses. And you might find that by doing that, you're actually using less resources, in terms of either medications, which all have side effects or even imaging techniques, which cost a lot of money.

Dr. Caroline West:         

One thing that I think that doctors and health providers can be a little rusty on, is this question around cost. Now sometimes that's because quite frankly, the doctor may not even realize how much something is going to cost, particularly, if you're sending somebody off to a therapist. There are financial travel costs, emotional costs. What's your take on this? Do you think that we're particularly good at this area? Or is there room for improvement?

Dr. Karen Price:               

I think we are familiar with being on the one side of the desk, which is, we order the tests, people come back obediently in a week or two's time with all of these things done. But they've had to take two or three days off work. They've had to arrange childcare. It's cost them X, Y, Z. Sometimes when they tell you, "Oh, that costs me 3 or $400," it really gives you room to pause to make sure that you're not the instrument of harm to this person, either financial harm or any other form of harm. Because you've really got to make sure that, that test is absolutely something that's going to change management, based on the outcome of that result.

Dr. Caroline West:         

Yes, that's a good example. I've been working at Broken Hill, which people may know as an outback town. It's famous for being Priscilla, Queen of the Desert. So, the Palace Hotel's been a lot quieter over the last 18 months, but I think it's cranking up again. But when I had to discuss with my patients, having something like an MRI, they've now got an MRI in Broken Hill, but we didn't have one that was nearby. The nearest one was Mildura. Now that's three hours’ drive away. And there are a lot of things that aren't funded in terms of the rebates for MRIs. So, you had to have a really frank conversation about, well, you have to be able to get somewhere, which is a round trip of possibly eight hours. It's then going to be this much out of pocket. And then the question which is on the Choosing Wisely questions, well, what happens if I don't do anything? What happens if I don't get that MRI?

Dr. Karen Price:              

That's a very valid question. Very, very valid.

Dr. Caroline West:          

And so, I think that sometimes in urban centers where we have a lot of access to services where it may be a shorter amount of time you have to take out to do something. As doctors, we just order a test and off they go. But in rural settings, it's a big consideration, in terms of how somebody will actually get the thing done.

Dr. Karen Price:               

Well, that's right. So, you've got to strike this balance of not holding off too long and making sure that again, that you're not doing a disservice to the patient by waiting too long, but also by not rushing to something. So in urban it is often more available, but equally, they can be particularly for people who've got low income and low resources. You've really got to think about how you're going to do it because often those opportunities to investigate are not available easily. And they often do have to wait a long time to get them. So, it can be a real challenge. And you might actually say to them, "Look, I believe you really need this investigation." They may, well, get other family members to pay for it. But you're not going to ask  anyone to do that lightly. And I do think we've got to be very careful that we give people financial literacy around what is actually going to cost them.

Dr. Caroline West:         

I think it's also a good decision aid for a doctor to refer to as well. Because if we go back to this example of lower back pain, common lower back pain without any red flags and the overuse of imaging. I think that if GPs and other doctors were to go through that list, they may end up working with a patient and deciding, "Actually, we're not going to order that X-ray. We're not going to send you off for that CAT scan or MRI. We're going to sit and wait and look at some other strategies first."

Dr. Karen Price:             

  Yes, exactly. So, I mean we've got, all got probably plenty of examples of this, and I've got people who are older, who've got lower back pain, but it's after a thorough clinical history and an examination, determining that it's a muscular issue in the lower gluteal muscles, in the buttocks. And that can refer up to the back and having that explanation ready. But what can be frustrating is when they go off somewhere else, because particularly my job at the moment, I'm not as available as I was, and I've had experience of people getting a CAT scan, which is, guess what, it's shown up a little bit of arthritis because they are of a certain age and perhaps a mildly narrow disc spaces. None of which necessarily correlate with the clinical experience of pain, but it's a false reassurance and not clinically indicated. And it's actually cost the patient money. And as well as potential side effects, I mean, all these investigations have side effects.

Dr. Caroline West:          

Have you noticed, there's change in this area and that doctors are changing their behaviours, and consumers are changing yet? Or is it still a locked into the back pain equals X-ray equals?

Dr. Karen Price:              

I think there's still a desire to go to the doctor, get a test and see what's wrong, rather than relying on the clinical acumen that we've developed over our 11, 12 years of education and lifetime experience. So, I think there is a change. I do see a change, but it can be hard in some other areas. So sometimes as I said, families can demand it because it's been going on too long. There can be somatization issues where perhaps people are under stress or have lifestyle issues, like all of us... Zoom talks. It's not good for your back. You need to get up and move. And I think what's really good is if I can prescribe out an exercise program, I got a classic example, as someone who was a previously very, very good swimmer, and got them to pay for a swimming instruction, and that actually improved their back pain over time. And that was really instructive for them because they initially were really keen on having all the investigations and all the treatments, and that might include surgery. But we actually got them a lot better using very low levels of mild analgesics and getting them to the pool.

Dr. Caroline West:         

Because I guess, often people want their experience validated. And ordering a test seems to validate that this is serious, we're taking it seriously. And so, I guess we've got to uncouple that sense of, that we care with being equal to doing more stuff, because I think that often people do join those together. They go, "My doctor really cares. They've ordered all these tests and they've done an X-ray. They're really looking with the torch in every corner."

Dr. Karen Price:               

You and I know as GPs that all of the healthcare visuals that are carried on TV and so all of high-end interventionist kind of hospital-based procedures, and yet most of healthcare occurs in primary care. And most of the healthcare is really a question of sifting out, what doesn't need urgent treatment or urgent investigation. And that saves the patients, lots of medical complications from treatments they didn't need. It saves the system money. And it actually helps our entire health system function more appropriately. We don't want the good old U.S. style health system, where for people who can afford it. They get everything done known to man. And we know that costs a lot more and their outcomes are a lot worse.

Dr. Caroline West:          

Talking about all of this, I guess it's interesting, because we're talking from a doctor's perspective, a GPs perspective. But of course, we are humans as well, Karen, and we go through our own health conditions. And sometimes sitting on the other side, it can feel quite uncomfortable for doctors to suddenly find themselves as patients. I know that you've gone public recently with your journey with breast cancer, to raise awareness around breast cancer. What was it like, when you had to be the one asking the questions?

Dr. Karen Price:               

Yeah. Look, it was difficult because this time there was a diagnosis of breast cancer and there was this psychological impact of it. So, you were more clouded, you were more anxious and trying to make sense of it in your own life. So, you realized how overwhelmed people could be. Now, I still count myself very lucky and fortunate because I've got a medical education in one of the best countries of the world to get a medical education. So, I'm pretty reasonably health literate, I would say. But understanding this was a journey were, because of that psychological impact that you might not be attending to everything. Now, my surgeon who does know me well because of my local referral patterns, was giving me journal articles and these sorts of things. I didn't really want them. I actually wanted other patients’ stories and to talk to other people. So being on the other side of the desk is a challenging thing. And in some of the consultations, I'd take one of my adult kids who are in the health industry. And just so I had someone else to, in case I missed something, in case it was some other question I needed to ask that I'd forgotten to ask, and all of those normal kind of things that patients tell us. You suddenly found yourself on the other side, but I had a very good treatment journey. I'm very grateful for what I went through and the outcome that I got.

Dr. Caroline West:          

Yeah. And are you doing okay now? I'm just checking in that you're sort of okay to talk about this.

Dr. Karen Price:               

Oh yeah, absolutely. My surgeon doesn't want to see me anymore and says, "Look pretty much, you are done and dusted." So, that makes me happy.

Dr. Caroline West:          

Fantastic. It's interesting that you talk about that experience about being in difficult circumstance as suddenly finding yourself as a patient and really wanting to hear the stories of other people going through the same sort of thing as yourself. And I think as doctors, it's really important that we pause and take note when we are in that situation of needing health advice ourselves. Because what I've found too, is that very often there's a presumption that we will know those five questions, the answers to those five questions. And so, the doctor that we are dealing with doesn't necessarily take us through that arc of information and often you just miss out. And if you're in a stressful circumstance where you've got emotional overload from just dealing with a diagnosis or a situation, being an advocate for yourself is sometimes tricky.

Dr. Karen Price:               

It's really important. And I say, anybody going through a tricky diagnosis process, to take someone with them so that they do have an advocate for them. I think that's a really important part of being involved in our very complicated health system. Now as I said earlier, that lying there, having things stuck into you, it's very easy to get dehumanized, and it's a very frightening experience, even for someone who's familiar with it. So, for people who are not familiar with it, who may have not got the language, it's a very challenging time. And we forget, I mean, we often talk about patients who come in and have got a headache and they say, "Have I got a brain tumour?" Now, for them, they're facing the same potential anxiety that anyone else facing a real brain tumour may experience. But we've got to remember not to diminish these concerns and that people can ask these questions and feel comfortable about, "Look you've actually got a classic tension headache. It's really common. I'm not at all concerned that you've got a brain tumour." And this is why, and we go through that and that we actually address those anxieties and concerns, and that patients can feel really comfortable, and they've got a treatment plan. And I must say, in my practice, I really try and give everyone a treatment plan that, "This is what it is. This is what we're going to do. And this is what you do if X, Y, and Z happens." So that they understand very much what the roadmap is, should things not go according to plan.

Dr. Caroline West:         

It's interesting that you mentioned that example of the headache and the brain tumour, because that's probably the number one thing I hear when somebody's got a tension band headache, they're really stressing even further that this could be something really serious. Sometimes I even insert it into my conversation, and I say, "You know what? This headache isn't really fitting into this pattern." And some people might be concerned that it's something really serious, like a brain tumour, but it doesn't fit. And they go, "Oh, thank God, you mentioned that, because that's been on my mind. And I felt too much of a dope to actually mention it." But that's been the thing that's really worrying them. And that has led to the presentation.

Dr. Karen Price:              

And it's really important to unpick that because they might be demanding imaging and you might not actually clearly understand why. But underneath that, there's a whole degree of anxiety. And you might uncover a whole story that you didn't know about your patient that their grandmother died or somebody I know. It's a whole journey of healthcare. And this is why having that longitudinal relationship with a GP that you can trust is really, really important. And why trust? I mean, you can ask them difficult questions and you can talk to them about, "Well, why do I need to do that?" You can actually go through these five questions and know that your doctor won't be challenged by them. That they'll be welcome. That they'll actually welcome that discussion because it's all about improving and empowering our patients to feel comfortable in their own treatment decisions.

Dr. Caroline West:         

The taking someone with you is a really good recommendation. What other things do you suggest as tips to really improve that shared decision making? Pre-planning or taking notes? I mean, what do you find, in reality, actually helps?

Dr. Karen Price:               

Well, from a doctor's point of view, it always actually really helps me if my patient has a list. And so, for patients who are going on, say a longer... Any kind of treatment journey, I say, "Look, write down your questions so that we can cover them. And you might want to think of them outside of a consultation before you go in. And that helps your doctor, make sure we've got your patient's agenda, the things that you want to know, the things that are worrying you and bothering you, we've addressed them all. Because unless we address them all, we actually haven't really finished that consultation."

Dr. Caroline West:          

It's interesting. You talk about agenda. I was talking to Professor Julie Leask, and people can listen in on the NPS MedicineWise podcast, on COVID vaccinations and children. And she was talking about hesitancy and in parents, and she really stressed that whole thing of having agenda setting, where the patient consumer is given the opportunity to really set out what they want to cover, to make sure that we've actually covered that. So, you can address it.

Dr. Karen Price:               

Around the COVID vaccine, and Julie Leask is a fantastic advocate for this kind of process of shared decision making, there might be questions that you and I, as doctors can't answer yet because maybe the evidence has just changed and maybe we need to go and look up something. Or maybe it isn't evidence free zone. And we've got to talk about that risk benefit where it's not on TV where it's classic X plus Y equals Z. And it's easy and black and white. Medical treatment decisions and shared decision-making often has a degree of uncertainty around it and a degree of grayness around some of those decisions. It's a risk and benefit situation. And the vaccination program is a classic example of that. We would have to say, "Well, there's no zero risk here. These are the potential issues of having a vaccination. These are the potential issues of having COVID. And clearly the benefits of having the vaccination, in general, outweigh the risks to you, of having a COVID." But that decision process has got to be gone through, and very clearly shown to the patient about what's going on here.

Dr. Caroline West:          

And sometimes the health professional leaning into that conversation around risk is highly beneficial because we are not being avoidant. And in fact, it can lead to increased trust because there's a sense, "Look, my practitioners being [00:25:30] upfront with me." And sometimes I think as GPs, we walk away from that because we think we don't want to put people off, having something that's going to be quite useful in our eyes. But without actually presenting the bigger picture we're doing our patients a disservice, because it may actually increase empowerment and trust if we actually go to those slightly less comfortable areas of conversation around risk and safety.

Dr. Karen Price:               

And I'm seeing doctors more and more use the internet in front of patients. And I think that's a really good thing to do because they can show patients how they navigate the internet, where they go for their sites. They can talk through a particular patient aid and so forth. So, I'm forever, in many cases, jumping on and looking up something for them and going through it with them and talking through how they actually search for information, and this information is good or that information is rubbish and so forth. So even giving them the ability to sort and sift information on the internet and do it with them in the room is great.

Dr. Caroline West:          

When I get asked questions as a GP very often, I don't know the answer, and so I'm quite comfortable saying, "Actually, I'm not too sure about that. I'll have to research that myself and get back to you." Or "I'll give you a call later." Or whatever it is. Do you think that that doctors in general are becoming more confident of acknowledging some of the gaps in their knowledge?

Dr. Karen Price:              

Look, I hope so. I think there's some statistic, isn't there, Caroline? Somewhere that if you wanted to keep up with one part of interventional cardiology, you'd have to read a journal every night for 10 hours or something. So the volume of information in medical care. Now we're familiar with the whole competency of it. We're right across pretty much all of the disease systems, but sometimes you do need to go and look up something and where it fits into that marvellous education that we've had. And you're able to give a much more clear discussion about that because it will fit into our first principles that we already know about our basic pathology and physiology and so forth, and much better than a patient trying to make sense of it themselves. So I often do that with them there, or if I haven't got time, I'll say, "Look, I'll find out for you and come back to you next week." So, I have no problem with saying, "I don't know." And I would hope that most clinicians, whether they are general practitioners or specialists, because I've had specialists say that to me, "Oh, I don't know the answer to that question." And that's good because then it tells me where we are going and I feel very comfortable with a clinician, any clinician who says, "I don't know."

Dr. Caroline West:          

And I imagine that the RACGP under your presidency will be really championing this particular area of healthcare and in terms of mentoring the next generation.

Dr. Karen Price:              

Oh yeah, well mentoring the next generation, in planting the trees that others sit under, is a great legacy to think about. But also making sure that we are holding high standards in healthcare and that patients can be very comfortable that the RACGP is setting those standards for practices and for GPs to aspire to. And I think all of us, we all want to be the good GP and keep up with the evidence. And from what I've seen of most doctors, they really care about their patients and want to make sure that what they're delivering is, is of high quality and high standard. And we are here as a colleague to support them in that.

Dr. Caroline West:         

Great. And we've talked through the program about the Choosing W5 questions and of course, GPs and other health professionals can have the actual flyers or wallet cards in their surgeries to act as conversation prompts or direct people to the website which is choosingwisely.org.au for more consumer and health professional information. It's been a fascinating conversation, Karen. Thank you so much for joining us today. That's sadly all we have time for.

Dr. Karen Price:              

A pleasure. I hope everyone got something out of it and look forward to, well, continue conversation on healthcare.

Dr. Caroline West:          

Fantastic. And if anyone would like more information, you can go to nps.org.au. You can also check out our website for information on CPD points. We look forward to you joining us next time. I'm Dr. Caroline West, I've been with Dr. Karen Price. Bye, for now.