Shared Decision Making – What is it, and Why should I care?

sam — Thu, 24 Mar 2022 08:13:01 +0000

sam Thu, 24/03/2022 - 08:13

Shared decision making (SDM) is a bit of a hot topic in medical circles. Well, it should be, but it mostly seems to be a hot topic among people who are researching clinician-patient interactions and people who have ‘caught the bug’ for it and are trying to drive change. It’s making a fair bit of headway here in Britain, with England’s National Institute for Health and Care Excellence (NICE) publishing a guideline on Shared Decision Making last summer calling for the “embedding of shared decision making across every organisation or system regardless of its size”. With increasing patient-facing roles for pharmacists, the European Association of Hospital Pharmacists Congress has a keynote today about it; I’m co-presenting, though couldn’t make it to Vienna, so my contribution was recorded as video used during the presentation.

The NICE Guideline is quite strongly put, with several ‘do’ recommendations (as opposed to ‘consider’ ones). This doesn’t mean these things will happen; NHS healthcare providers in England are only required to have regard to NICE Guidance, though the regulator and funding bodies will use them (and accompanying Quality Standards) as benchmarks. The guideline is clear that a senior leader should be accountable for embedding SDM, that there should be one or more organisation-wide ‘service user champions’ (“recruited from people who use services”, and it’s worrying that they had to make that explicit), one or more senior health professionals working as ‘professional champions’, and that organisations should consider appointing a patient director (“from a service user background”) to work with the senior leader, the professional and service user ‘champions’ being there to support both the patient director (if there is one) and the senior leader.

(If any organisation in my area is in the market for such a service user director or champion, I could be available, by the way)

There’s a lot of more bureaucratic stuff about implementation, supporting and training staff, and even what sort of posters should be up in areas where patients/service users spend time. It does go on to make some very specific points about how to ‘do’ shared decision making, focussed on a few areas – discussions, decision aids, involvement of family, friends, carers, advocates etc, the need to support people who have more difficulty with SDM or don’t have support from family etc, the importance of clear communication about risks and benefits, that sort of thing. It’s all very good, as far as it goes, though what I consider the most important thing to know about SDM is only really there by implication (more on which below), and it leaves a lot of detail up to interpretation.

That’s understandable, given NICE Guidelines aren’t there to tell clinicians how to be a clinician, but SDM is still a new way of doing things, and there are a lot of doctors and other health professionals who won’t know much about it, and won’t have confidence in doing it. The first wave of ‘involving patients in making decisions about their care’ resulted in a lot of doctors just asking patients what they thought the doctor should do, sometimes having provided options, sometimes not. I have to say, that’s not very helpful for the vast majority of patients, even knowledgeable ones like me. Before that, and still with some doctors, especially some specialisms, the approach is more paternalistic – the doctor knows best, tell the doctor things, they do tests, they tell you what is going to happen. Of course, patient consent is still important in that scenario, but doctors following that model tend to assume the patient will consent. The way some clinical guidelines are presented – particularly those with ‘pathways’ for care – can reinforce this approach, but rather than being driven by a paternalistic attitude it is driven by the algorithmic nature of guidance.

Shared decision making is different – it is based on the idea of the patient, the doctor (or other clinician, or several clinicians), and other people the patient wants involved, sharing information with one another, things going both ways, and making a decision together. While that principle can be discerned reading the Guideline as a whole, I’m not sure it is clearly stated. There are formulas for how to go about doing SDM, which if read correctly will lead to this happening, but it isn’t clearly stated – and it should be. The paternalistic model involves the patient telling the doctor things, and the doctor making decisions; patient-led decision making (as I shall call it, not being sure if there is a technical term) involves the doctor telling the patient what their test results mean, what their symptoms point to, what the implications of their diagnosis are, what the options are for treatment, what risks are involved – and the patient making decisions. Judging by some American medical YouTubers, the patient-led model is dominant and considered ‘best’ in America.

That isn’t shared decision making. You don’t even get shared decision making by combining elements of the two approaches, though you can see elements of both in well-done SDM. Shared decision making takes more time than either approach, and a level of empathy that one would hope was normal among clinicians (though experience suggests otherwise). Shared decision making is about back-and-forth, about clinicians understanding a patient’s life in ways they might not otherwise need, about high quality communication and making sure patients understand risks and benefits to the best of their ability.

Because of this dynamic, because of the wide scope of information exchanged, it allows patients who aren’t willing or able to really look at options in detail to still end up with a decision that is likely to match what they would choose if they did so. It allows curious patients who want to know as much as possible to learn it. It allows clinicians to incorporate patient priorities that they might not even realise were there. It can even optimise the involvement of patients in decision-making where they aren’t legally capable of making a decision.

I’ll be writing more in the near future about shared decision making, different aspects of the process and the great opportunities it presents for improved outcomes – especially subjective outcomes, patients getting what they want rather than what a policy-maker has decided is the best outcome. There’s far too much to it to do justice in one blog post, without making it so long that you would give up reading. What I hope to do is help clinicians and patients understand what shared decision making is, why it’s good, and how to do it properly, based on how patients experience such interactions – not from the clinical perspective. The ‘how’ is obviously more aimed at clinicians, but if patients understand as well then they will be more able to participate fully. I’ll just finish with a couple of examples where properly done SDM can lead to better outcomes for patients.

To take an obvious, and very emotive case, you may have a patient who is likely (or even definitely) going to die of some condition, and sooner (say in the order of years) rather than later. There may be some important life event coming up that they want to participate in fully, which might mean that their priorities lead to a path of treatment that doesn’t maximise the quantity of time they have left. Instead, they would be focused on quality of life, not now, not over the whole remaining time of their life, but over some short period of time in the future.

Pain management is always a difficult proposition, but it’s even harder for people who particularly value clarity of thought – for example, those whose work or recreational activities are intellectually-focused. Pain isn’t great for clarity of thought, but nor are a lot of pain relieving medications, whether they be opioids or gabapentinoids, among many others. Rather than pain management being about minimising both pain and the risks related to pain relief, such as tolerance, dependence, misuse, or side-effects in general, it becomes about balancing pain and pain relief to optimise cognitive function, an entirely different proposition.

As a final example for today, I’ll use myself. My wife and I are mutual carers, both disabled, both with long-term health conditions that affect us day-to-day. We each have limitations, some different, some shared. Together, we muddle through pretty well – alone, we would struggle massively, and it would be hard for someone else to substitute and provide a lot of the care. That means that both of us would very much rather avoid any sort of treatment that would prevent us caring for the other; elective surgery is something we would avoid more than your average person, and where we need a procedure that could be done with sedation or general anaesthetic, or could be done with only local anaesthetic, we’re usually going to choose the local. If our doctors, and other health professionals, know about our mutual caring role, and the implications of it, they can start off discussions from the basis of avoiding inpatient stays and similar. If they don’t, and if a good process of shared decision making isn’t followed, they may be quite confused (or draw incorrect conclusions) from the choices we end up making.

shared decision making

Shared Decision Making – What is it, and Why should I care?

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