Making shared decision-making normal for all NHS patients.
What we are discussing over the next few weeks is how any new November contract between the NHS and the public will be met. This week part of the “how” is looking at how the NHS, if it is to deliver anything new, will need to ensure that some of the larger elements of waste are successfully tackled. Given the extra money being promised from the taxpayer every penny must count for better outcomes.
Today I want to argue for what would be a considerable cultural change for the NHS and that is making shared decision-making between clinicians and patients normal. Some clinicians would say, that in 2018 it is pretty normal anyway. But out of the one million consultations every 36 hours the number where patient and clinician reach an equal informed agreement about a treatment plan would not be a large proportion.
Others would say this may be a good idea and, as an addition, we would really like it – but what has it got to do with waste? And my answer to that – is that it has pretty much everything to do with waste. Shared decision-making is thought to be appropriate when the patient may well:-
- Undergo some screening or a diagnostic test
- Undergo a medical or surgical procedure
- Participate in self-management or a psychological intervention
- Take medication
- Attempt a life style change
Let’s examine some of these and see what might go wrong if a patient doesn’t really understand what is happening and how that lack of understanding may lead to waste.
Tests The experience of end of life care for many people – and their loved ones – is filled with a wide range of tests suggested by clinicians for the very best of reasons, and patients are therefore often told they are essential.
But they are not essential if the patient and their loved ones have a different view of their immediate future. One which does not involve such interventions but is rather one of a quiet, peaceful death. The waste here is real – in terms of resources – and it is also real in terms of people not getting the type of death they want.
Surgical procedures Some of the best work in shared decision-making has been carried out in musculoskeletal pathways where patients have had the possible outcomes of their operations explained to them with alternatives outlined in detail. Some patients, when informed and with a full understanding, decline the operations. As far as they are concerned they are not needed or are too risky, but would have been carried out without their involvement.
Self-management of a long-term condition Given more than two-thirds of the work of the NHS is working with long-term conditions, the amount of self-management that it now depends on is enormous. There is something a bit obvious here and the secret is in the phrase self–management. The idea is that you (and your carer) will look after yourself better during the vast majority of time when the NHS clinician is not there. If you are not fully informed when with the clinician, if you haven’t fully agreed to what self-management will mean when you are home alone at 6 o’clock on a Friday morning, then it is very unlikely that your self will be able to manage. Something will go wrong. If YOU are not informed how can you be expected to SELF manage?
Medication Taking medication is the most obvious of these issues because in nearly every case medication will need to be taken, and will go on being taken, when the clinician is not there. If you don’t understand what is going on with the medication you might, for example, stop taking it because today you feel better.
Add all this together and it’s a lot of waste that can only be saved by fully informing and sharing decision-making with patients. But, and this is an important point, it requires the clinician to use up time in discussions with the patient. And that’s why the clinician, to achieve shared decision-making, will need additional help in explaining the implications in detail – and in terms of patients’ lives – to the patients themselves.
In every circumstance this can be best achieved by patients and ex-patients working as a part of the clinical team.
If the clinician thinks that you should go for a test that may show you have a life-threatening disease how will you feel in the hours before (and after) the results come through? Who is best to talk this through with you – surely someone (a patient) who has been through the experience? Think about those feelings with them and you will have a much better idea of what to do.
Talk to someone who has had to get used to taking 3 different sorts of medication at different times of the day with a range of side effects. How has it impacted on them? How might it impact on you?
All of this is not just much better care but is less wasteful.
But this shared decision-making is not a new idea. Less than a decade ago the Health Foundation carried out some excellent pilots called Magic and the Kings Fund published a great pamphlet outlining how to make it happen on a wider canvass.
One of the reasons it hasn’t been successfully broadcast across the NHS is because it has been seen as “nice to have” rather than, as I am arguing here, something that is essential to the future of an NHS with constrained resources.
But the good thing about 10-year plans is that 10 years is quite a long time to achieve something. I remember, in 2001, looking at the maximum waiting times that the Labour government had just been elected to bring about and listening to what the vast majority of the NHS was saying (it wasn’t possible). This was a bit daunting and I was calmed down by the deliverologists in the Prime Ministers delivery unit telling me that we had 5 years before the first target and that was 60 months. And in each month we could achieve something that grew and grew.
We know what will make shared decision-making grow
- Greater national provision of decision-making aids
- The identification of decision points in pathways
- Better provision of, and support for, shared decision-making from the centre
- Inclusion of the subject in training
- Developing appropriate incentives
- Inclusion in commissioning standards
- Putting patients in charge of saying whether they have been included or not
But the 10-year plan will need to outline which sets of decisions will be shared and by what dates.
This is not merely a good idea. If we’re to avoid running out of resources it’s an essential idea. We need deliverologists to ensure it happens across the NHS in 120 months.