Thursday, 13 December 2012

Shared Decision Making webex with Angela Coulter

Today I joined the shared decision making webex hosted by NHS South of England and presented by Angela Coulter. It was good to hear the background and key principles of a term that is the real NHS buzz-word of the day I hear so often. Coulter made some excellent points and raised some questions for me which I wanted to explore further in this post.

Angela Coulter (The King's Fund)
She described shared decision making (SDM) as making "informed and personally relevant decisions", which for me captures the two most important components - information and individuals! SDM requires information, but the decisions I make with my doctor could very well be totally different from the decisions made by the next patient even if we are both presented with the same information. "Personally relevant" also encapsulates the wider social and emotional context in which disease takes place.

Shared decision making recognises the expertise of both parties - clinicians and patients - and therefore also recognises the importance of medical, clinical, emotional and social knowledge, which is very powerful. Coulter explained this very well by listing the skills of clinicians (in diagnosis, prognosis and treatment) and patients (experience of illness, social situation, values) which although very different, are complementary and give the full picture. But the differences do highlight the need for discussions - almost two different languages!

Bad decisions are made, according to Coulter, because of the clinicians' ignorance of patients' preferences and patients themselves being unaware of the options. In my mind, that means that shared decision making requires patients to take considerable responsibility to source and process information - something which can be facilitated by doctors, but ultimately has to be done by the patient themselves. Coulter commented on this later in the talk, saying that we cannot expect doctors to know all the answers to all of the questions patients ask in SDM cases, but emphasised that the clinicians' role in the SDM is supplemented with evidence-based information.

Continuing the theme of information, Coulter explained the three components of SDM: reliable evidence and information; discussion; recording and implementing the decision. PDA (Patient Decision Aids - not as passionate or romantic as you would have thought!) have been developed to support the first component, and Coulter talked us through a number of impressive systems for specific conditions. Perhaps biased by being a patient with 4 rare conditions, I found this part frustrating. What if there is little evidence out there and therefore no nice simple PDAs to help you? I posed this to Coulter during the Q&A session, who replied saying that PDAs are not essential, and in the case of such specialised care, the clinician should be aware of all the information and can discuss it with the patient verbally during the consultation. From my experience, this is optimistic for several reasons: a) time! (although Coulter did recognise this as a constraint) b) when doctors are so specialised they can often lack the ability to explain their life's work in lay terms and c) all the information needs to be digested by the patient - something that cannot happen during an appointment since patients need time to reflect on the written information in the following days.

Listening to Coulter has broadened my view on SDM. Having long-term conditions my self I know I have an automatic filter for anything LTC, but I was interested to hear the applications of SDM in acute conditions too. This encourages me - doctors should be getting enough practice if all patients have the potential to be involved in the decision making process! SDM does have particular relevance to long-term conditions though, which Coulter recognised, because of the very large number of decisions these patients have to make. True! In the context of LTCs, she talked about goals, which differ between patients and healthcare professionals. When there is no cure, goals are the only thing to work towards, and getting common consensus on them between patients and healthcare professionals is critical to check they are the appropriate goals and to begin working towards them. I think I need to sit down and think about my goals ahead of my next appointment and make sure I communicate them, and that my doctors are working towards the same place!

Overall, it was interesting and gave me a much needed basis on the subject to move forward as a patient. By the very nature of its name, SHARED decision making, I do feel quite strongly that the responsibility for SDM must also be shared, between doctors and patients. And I guess that is where self-management comes in - taking that responsibility and embracing the skills for SDM is another vital tool in the self-management toolkit for patients with long-term health conditions. After all, we do have a lot of decisions to make for a very long time . . . .

The saying "sharing is caring" seems very appropriate here!

Thank you Angela Coulter!

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