AIMS (Association for Improvements in the Maternity Services) - alongside others in the maternity service improvement community - is concerned that the concept of 'shared decision making' is both misleading and dangerous, allowing muddled thinking around the respective roles of healthcare providers and recipients and a lack of clarity around the legal basis for decision making. Via our helpline, AIMS frequently sees the ill effects of this, with service users repeatedly confronted by healthcare professionals who do not seem to understand that decisions are for the service user to make. We urgently need to see a shift in mindset.
A proud history ...
In focusing on this, we appreciate the history, and indeed pride, around the term 'shared decision making'. In its time, the term marked a welcome shift away from the era when decision making was exclusively the preserve of healthcare professionals. We acknowledge the practical difficulties in moving away from this language, including the challenge of updating rafts of documents and offering associated training.
… but needs are changing
However, we also note important moves to change language. "Supported decision making" has been adopted by the Royal College of Surgeons. And following service-user pressure, NHS England’s Maternity Transformation Programme is shifting towards the language of "informed decision making".
Language needs to keep up ...
At the same time, parts of our healthcare system work to reinforce the notion of “shared decision making”. NICE recently consulted on new “shared decision-making” guidance (publication expected June 2021). Their intention is positive: to raise standards across the NHS. But is this undermined by unwillingness to address the discussion around whether the language remains fit for purpose?
… not hold us back.
While the scoping exercise revealed dissatisfaction with the term “shared decision-making”, NICE ploughed on, noting the importance of “keep[ing] the terminology consistent across national strategies and plans” and “clarify[ing] that while the process of reaching a decision is shared, ultimately this is to support the person to reach a decision about their care.” On the first point, we have surely heard enough of the ‘this is the way we do things around here’ approach. On the second point, the real absurdity perhaps is that the draft guideline did not - and perhaps could not - offer any such clarity. Which leaves us with a conundrum: undertaking a NICE guideline review isn’t cheap, so was it nonsensical for NICE to press ahead with a review of these guidelines before this issue of terminology was resolved?
Will you join the campaign?
Whatever the barriers to change, we believe it’s time to move forward and make this shift, in language and thinking. We need to align the discussion, training and documentation around decision making in our healthcare services with the legal framework, to improve clarity, understanding, and - ultimately - improved patient safety. Do you agree? If so, will you join with AIMS and others, and campaign for the language of “shared decision making” to be ditched?
Jo Dagustun is a member of the AIMS Campaigns Team. AIMS (Association for Improvements in the Maternity Services) is a UK charity that celebrated its 60th birthday last year, and proudly continues to campaign for a UK maternity system that truly meets the needs of all.