Transcript of learning module Shared decision making (Dur: 26' 13") Contributors: Anna Sayburn and Alf Collins Available online at: http://learning.bmj.com/ V/O: You re listening to an audio module from BMJ Learning. Hallo. I'm Anna Sayburn, Senior Editor with the BMJ Group s Consumer Health Team. In this audio module we ll discuss shared decision making. And I'm pleased to have Dr Alf Collins here to talk to us. Dr Collins has written and presented extensively on this approach to clinical practice. He s a consultant in pain medicine in Somerset. Many thanks for joining us. Thank you Anna. It s good to be here. So let s start off by talking about why shared decision making is so important.
It s important for patients. It s important because there s really an ethical imperative to involve people in decisions about their health and about their healthcare. You know if we look at society in general we re decision makers. We manage our own bank accounts. We manage our own lives. When it comes to our own health there is this deep ethical imperative that we are truly and intimately involved in all decisions about our health and our healthcare. Okay. So what does the shared decision making process actually involve when you get down to it? Right. What it s really about is supporting people to understand their condition, or their conditions. Supporting them then when they have an understanding of the condition to understand the options that they face. If you're having a heart attack you don t face many options. It s pretty important you get into hospital pretty quickly. If you have a head injury, ditto. For many conditions it s not immediately clear that there s one specific course of action that should be taken in all circumstances. There are usually a range of what we tend to call competing options; so there s usually a range of different things available to us, including doing nothing or having nothing done. What s really important in shared decision making is that people are told about the options available. So sharing with people the fact there are options is really, really important. 2
And then supporting them to articulate their preferences, what s important to them. Is it important that they have a real control over it so they make a lifestyle change for themselves? Is it important to them that they don t really take pills because they're already taking 15 other pills for 15 other different problems that they have? So supporting them to articulate their own preferences is really important as well. So we talk about option talk, preference talk, and then decision talk. Having talked about the options, having talked about their preferences, we then move into making a decision together about the best possible course of action. So the doctor or the healthcare professional has actually got quite a complex task in terms of communicating with the patient. Not just in setting out the options but in helping the patient to understand them, to think about the implications, and also perhaps just to recognise that it is a choice where their own preferences come into play and are important. I think the first thing to say is that shared decision making is about the conversation, about the interaction, the communication between doctors and patients. And tools should be there to support that interaction. So it s really about the skills of the clinician alongside the tools that we get the very best kind of outcomes. So what kind of decisions are we talking about here? 3
I think it s really decisions about whether or not to undergo a medical or a surgical procedure; whether to participate in a selfmanagement programme or perhaps undergo a psychological intervention; whether to undergo a screening or diagnostic test; whether or not to take medication or whether or not to attempt a lifestyle change. So a whole range of decision points we might face in our lives when we talk with a medical professional. So this is really covering quite a wide range. You're not limiting it to it s just about informed consent for surgery for example. It could go into very many areas of medical care. Right. I mean it started with informed consent for surgery. What s important is I think we face decisions about our health day on day across a broad range of different circumstances. So let s look at a bit more detail about what the process of shared decision making involves. Right. First of all it involves decision support counselling, so the consultation itself, which involves a number of stages: supporting people to understand there is indeed a choice; supporting them to understand what the options are; supporting them to articulate their values and their preferences; and then working together to decide on a best course of action. So that s the consultation itself. 4
Now that consultation supports people in a process of deliberation where they move from having perhaps a previously uninformed preference about what they might wish to proceed with towards an informed preference. There are a number of tools to support that process of deliberation and we tend to call them decision aids. Now those decision aids can be tools that patients use outwith the consultation, so they may come in armed with the information that they ve gleaned from a decision aid. Or they may start a consultation and the doctor say, Why don t you go away and have a look at this decision aid and then come back and we ll have a further conversation when you ve really gone through it in some detail? Some of those decision aids, as I say, take up to two hours to go through. Now clearly you're not going to be able to use those longer decision aids in a consultation. So we re moving now towards thinking about brief decision aids, so very specific tools which you can use in a consultation. So they're very distilled. And one form of them that I'm used to using is something called an option grid. And an option grid lays out the options very clearly as a series of rows and then the columns then are the kind of questions that people tend to ask about the various options available. So handing people over that option grid and supporting them to consider their options is really important. So an option grid is really pretty distilled. The broader decision aids have got reliable, balanced, evidence based information with lots of detail about options, risks, benefits, and uncertainties. The option grids have just got that distilled into 5
some very clear figures that then can be used to open up further conversations. What s of course really important is having made the decision you record it. There s quite a lot of thought now into if we re starting to develop a system where patients, informed patients, are truly telling us what they want, you can then start to commission systems of care which integrate all of that information. So you can build a system of care based around what informed patients want rather than a system of care based around what doctors feel they should have. So let s look at a few case examples, keeping in mind these points and thinking about how the consultation would proceed. The first example: we have a 40 year old man who s fit and healthy but has complained of severe back pain. And he s been sent for an MRI scan and has single level change in a disc. So talk us through how you would discuss the various treatment options for back pain in this situation. Okay. I think the really important principle here is that there is a great degree of uncertainty about what that single level change in a disc represents. Is it normal for a person of that age? And by the time we re 40 there is a 40% chance of having a single level disc change whether you ve got back pain or not. 6
Or is that single level disc responsible, or to what degree is it responsible, for the back pain? We actually are uncertain about that. So shared decision making would involve being really clear about that uncertainty, being really clear about what we know and what we don t know about back pain. And there s an awful lot we don t know. So we know back pain is real and physical. We know it s related to the way the back works. We know there is a relationship between the way an MRI scan looks and our experience of back pain. We have an enormous uncertainty about the degree of that causal link. So being really clear with that 40 year old man about our uncertainty, being really clear about what we do know and we don t know about back pain, and being really clear therefore about the various options available. So it could be that a course of supported exercise could help him strengthen up the muscles of his back and that in itself could help him manage his back pain. It could be that he s highly anxious, really worried, and that some support to help him manage his anxiety is the right way forward. It could be he s not very worried, he is very fit, and he wants to get back to playing football. And so it could be therefore that thoughts of an operation on that disc are the right way forward. So it s really important to discuss the uncertainty about the condition, discuss the options available clearly with him, and then support him to understand really what he wants to do given the potential for each of those potential options to give him benefit; of 7
course acknowledging that each of them comes with a potential risk, particularly of course the operation. So the conversation would be the condition, options, preferences, decision talk, and documentation, as normal. And one of course might want to use a decision aid to support that conversation. And the decision aid would cover lifestyle change, medication, possibly cognitive behavioural support, because we know that cognitive behavioural therapy is useful for people with back pain if they have levels of distress or disability, and an operation. So it would cover those four different options with the outcomes, risks, benefits, and uncertainties of each, such as we understand those risks, benefits, and uncertainties. And the broader decision aid might also involve really, really, really clear questions that you might want to ask them about what their preferences are. So, What s really important to you? Is it to get a bit fitter? Is it to manage your tendency to worry? Is it to get back playing football as quickly as possible? So those preferences would be really clearly outlined. And then the decision aid would cover the options, their preferences, and then how confident they are that they're starting to make a decision that s right for them. Now of course I'm moving into this much broader decision aid which actually is really rather difficult to use in a clinic. But that s what it might look like. Some of the better decision aids have actually got rather wonderful videos about patients who ve either gone for or not gone for the 8
various options available, clearly kind of articulating what s happened to them as a result of the decision that they ve made. So there s lots of really good stuff in a decision aid. So I suppose you wouldn t necessarily want them to make a decision there and then in the first consultation then? You might say to them, This is the situation that you're in. This is the uncertainty around your condition. These are the options open to you. Go away, find a bit more about it, perhaps have a look at this aid. And perhaps then come back and talk about a decision after that. It s important isn t it? You know I train a lot of people in shared decision making and I often say, When you bought your house did you make your decision about the house and the mortgage in 20 minutes? Well not that many people do. Some of these decisions about an operation, or not, these fateful decisions with potentially quite serious consequences, I think it s really unreasonable that we expect people to make a decision there and then. We need time to deliberate. We need time to make sense of the information. We need support to make sense of the information. We may need to go away and talk it through with our spouses, our carers, our friends, our relatives. Part of the way that we ve kind of constructed the NHS is we don t tend to allow for that in all circumstances. So I think again one of 9
the challenges for the NHS is how do we construct an NHS that supports people to deliberate? So the second case study we re looking about participation in self management of a condition. So you're a GP and you ve arranged a consultation with one of your patients, a 55 year old woman with type 2 diabetes who s come in for her annual review. How do you come up with a personalised care plan together while also managing the QOF targets that you need to achieve? I think the first thing to say is that for an average person with diabetes they spend three hours a year with the health service and 8,757 self managing. So the usual care for someone with diabetes, indeed the usual care for anyone with any long term condition or long term conditions, is self care. So the principle of personalised care planning is supporting people to develop the knowledge, skills, and confidence to manage their health between this appointment and the next scheduled appointment whilst also managing their biomedical markers in between times. The principles are the same. They re really around supporting people A) to prepare for the consultation. So we know for instance that if people with diabetes know their HbA 1c and indeed their blood pressure before they come along for their annual review, and they know what they mean and what they 10
can do about those markers, they come in more prepared and more confident. If we also support them to be clear about what they want to get out of the time together that also really changes the dynamic of the conversation that happens. So it may be that someone with diabetes, when they re clear their HbA 1c is quite high, says, I want to know more about reducing my HbA 1c. They may want to know a little more about diet. They may want to know a little more about let s say local resources that can help them get a little fitter. So supporting people while they re in the waiting room to think through what they want to get out of the conversation, the consultation, is really important too. When they come in, they set the agenda. They set the agenda for the consultation. Now most of the time when they set the agenda they ll also be setting your agenda as well as a clinician. But it may well be that they don t actually mention your agenda. So of course it s valid and important that once they ve set the agenda I want to think more about my HbA 1c. I want to manage my weight a little better. I want to know about local resources for exercise you as the GP may want to say, And shall we think about your blood pressure today as well? Of course acknowledging that managing weight and taking more exercise are going to be good for your blood pressure as well. So that process of shared agenda setting is really important. And then supporting people once they ve clarified what they want to get out of the session to think through their goals between now and the next appointment. 11
So, Yes, I want to lose a little bit of weight. In fact what I d like to do is lose two stones in the next three months. The way I'm going to do that is I'm going to do this, this, and this. And these are the resources I need from health and social services to help me do that. So setting the agenda, setting goals, managing local resources to support people to attain those goals, and then, just as in shared decision making about an operation, writing that down in a personalised care plan. And for our third example we re going to look at screening and diagnostic tests. Obviously slightly different in that you ve got someone who s healthy to start with, or we hope so, and is considering an intervention which may then take them down a whole pathway of test results. So for an example we ll take you ve got a 65 year old man who s arrived at the surgery, has heard about prostate specific antigen testing, perhaps has been encouraged by his wife or his daughter to come along and have a PSA test for prostate cancer, wants to know what you think, whether you think that s a good idea. How would you start that discussion? I think the first thing to say is I'm not an expert on PSA testing. But what I can do is give you a kind of a general answer based on what we know about the risks and uncertainties of any screening test in general. 12
Of course we know that for many screening tests there is a range of normality and there is a range of abnormality but that kind of grey area where normality and abnormality kind of seep into each other is really unknown. We know very little about that. So when is normal normal and when is abnormal abnormal? It s based on statistical probabilities. Now of course many patients don t really know that. They don t know that our screening tests can t give them a clear yes or no answer. All our screening test can do is give them a statistical probability about the risk of whether they do or don t have a condition. So I think that s one thing, is to be really clear with people about the fact that screening tests are not absolute. They are based on ranges. The other thing of course is what they are going to do as a result of the knowledge that they have after having the test. So of course if you're not going to do anything as a result of having the test the question is do you have the test in the first place? However if it opens up a range of options, one of which is surgery, then actually having the test can lead to proceeding with a potentially quite risky procedure when it may be that you don t have the condition in the first place. So being really clear with people about screening, and about the uncertainty of screening, and being really clear with people that as a result of knowing the result of a screening test they may then wish to discuss potentially quite risky interventions I think are some of the watch words of how to go ahead with shared decision making with people about screening tests. 13
Let s look a bit at the barriers to effective shared decision making, because there are quite a lot. And I mean the first thing that you often hear from doctors is, Well, we already do this. Right. And many of us do. I guess my retort is how do we know? Unless we re actually measuring decision quality routinely in our practice, and unless we re actually being taught shared decision making and routinely using measures of decision quality to feed back on our own practice, patients telling us whether we are indeed doing it, how do we know we re doing it systematically and reliably? What about whether patients actually want to do this? Don t a lot of patients turn round and say, Well doctor, what would you do? And the evidence is that most people do. We do want to be in charge of any decision in our own lives. And actually being in charge of decisions about our own health is really important. Not all of us do and not all of us do all of the time. And as I've said before, when we re sick we really do want to know that there is indeed just one course of action that somebody s going to do for us. However it s not always like that. As I've said before, there often are multiple possible options available. And working with people who are sick or frail or anxious sensitively to outline the options available is, as we ve said before, an ethical imperative. 14
Now I do have to say that people with low levels of health literacy do tend to think, Well it s the doctor s job to do this healthcare business. Of course if we do think that it s our job to make decisions for people with low levels of health literacy that is actually going to keep them in their level of low health literacy and actually consign them to a life of poor health. What about the fear that if you give people the choice then they re going to want inappropriate treatments or expensive treatments and this will bankrupt the NHS? And again it s a fear that many people have. I think the first thing to say is informed patients make wise decisions. And actually the evidence from the trials is that on the whole people want less intensive or interventive treatments when they truly do know about the options. There s been two Cochrane Reviews showing that that s indeed the case, perhaps a 20% reduction in a wish to proceed to surgery when people do know about the various options available. How do we know that this is actually helping, that this is something that is going to actually improve outcomes for sick people? If we look at a whole range of different circumstances, you know, it might be for instance that we re thinking of a 65 year old person with three or four different long term conditions. What s really 15
important for people with long term conditions is being in control; being in control of their condition and their life. So sharing decisions with them about their health and their healthcare is really vitally important to support them to get that sense of ownership. So that s long term conditions. If we look at let s say someone who has angina pectoris who is thinking about an operation. What s really, really important for someone with angina pectoris who s considering an angioplasty or a coronary artery bypass graft is they know the different options available to them. They know about medication. They ve tried all the different sorts of medication. They know that support to make a lifestyle change can make a real difference if you have angina. So having those various options available is incredibly important. As we ve said before, it s an ethical imperative. Now what seems to be the case is that if people do truly make an informed choice to go ahead with a particular course of action, broadly speaking we re starting to see that they have better outcomes. That s kind of sifting through all of the literature. Broadly speaking they seem to have better outcomes. What we certainly know is that people are more satisfied with the results of surgery and have a better quality of life as a result of that. And that s for a range of different surgical procedures right now. So the literature is starting to become clear. What incentive is there for a doctor to actually learn how to do this, spend time doing it? 16
You know I think of incentives in two different ways. If you're in policy we think of incentives in terms of paying people to do it. My really clear view is that most of us went into healthcare to do a good job, to care for patients, and to do the right thing by them. For me shared decision making goes back to those very early values that I entered medical school with, and I'm sure 99, maybe 100% of us went into medical school with, which is doing the right thing by patients and with patients. So the incentive for me is actually it s all about being a good doctor. Many thanks to Alf Collins. For further reading and useful resources follow the links on the next page. Thanks for listening. V/O: Thank you for listening to this audio module from BMJ Learning. BMJ Learning 2012 17