Shared decision making

I really take issue with the use of the term ‘shared decision-making’ in medical circles.

I have long talked about how evidence and decisions are two different things, and how we need to take care when we discuss these.

Here’s why, with the help of a couple of articles that have helped clarify my own thinking about this over the years.

Evidence and decisions – two different things

I was already uncomfortable with the term ‘shared decision making’ when I read a short but fascinating rapid response to a British Medical Journal article.

It was written in response to an ongoing discussion about evidence, guidelines and decision-making.

Michael H Stone pointed out that the role of evidence is to help clinicians to describe outcomes and make the guidelines which we know are sometimes necessary to ‘steer service provision’.

In a culture which prioritises evidence, health professionals are required to then present that evidence to people making decisions about their health.

But, as Stone points out, the people making decisions do not have to accept the treatment which is offered or recommended.

They are at liberty to “…incorporate personal and non-clinical factors into their decision-making, so ‘EBM’ can never prescribe the decision-making of any particular patient (sic).”

Exactly.

Evidence and decisions: two different things.

Who decides?

The decisions that we make about our pregnancy and childbirth journeys can shape our experiences, health and lives, as well as those of our families. But those decisions can be complex. This book is a guide to the different perspectives and approaches that exist, and it offers tips, tools and ways of thinking which will help you make the decisions that are right for you.

Stone went on to differentiate this even more clearly.

While doctors decide what to offer, he says, it is the recipient of health care who decides what to accept.

He then concludes that, “I personally find it very unhelpful to describe that as ‘shared decision-making’.” (Stone 2016)

I found myself nodding as I read this.

Stone had put into words something which has long bothered me.

As much as I love that there are brilliant, kind and woman-centred midwives, doctors, doulas and other birth workers out there who do everything they can to facilitate women and their families being able to make the decisions that are right for them, we need to ensure that the language we use clearly differentiates the elements of this.

Information, education and the sharing of evidence are a vital part of our role, but it is not for professionals to lay claim to participation in the decision-making of those who need to live with the consequences.

This means, as I have long ranted, ensuring that we talk about evidence separately from decision-making, reminding ourselves that, as important as it is, evidence is not the only thing that informs decisions and, perhaps most importantly of all, never forgetting that it is women who make the decisions about their care.

Another example

Calling a decision a ‘shared decision’ implies that the practitioner gets a say in what the person chooses.

Yet when it comes to adults, and unless there are unusual and extenuating circumstances, decision making is entirely the remit of the person whose body or health care is under discussion.

Those people may consult a practitioner for information, and they might even ask for advice, but the decision is theirs.

The need for this distinction was brought home to me even more clearly by another paper, which highlighted how we should not assume that practitioners have the knowledge we need to underpin our health decisions.

The paper was titled, “Are Providers Prepared to Engage Younger Women in Shared Decision-Making for Mammography?” (Martinez et al 2017).

The results of this study have important implications for people who need to make important decisions about health, as well as further illustrating why the idea of shared decision making is unhelpful.

Assessing care providers’ knowledge

Of the 220 primary care providers who filled out an online survey to assess their knowledge of the benefits and harms of mammography screening:

90% underestimated the risk of additional imaging
82% underestimated the risk of breast biopsy
62% percent correctly estimated screening’s impact on mortality (which means that 38% didn’t).
The majority (83%) said they believed in shared decision-making for mammography, yet most (77%) spent less than 5 minutes with discussing screening with women.
Of those who said they believed in shared decision-making, only 10% had key mammography knowledge and also felt highly competent at engaging women in screening discussions. (Martinez et al 2017).

If you’d like more information on that, here’s a link to the Cochrane review on this topic, which shares the statistics on both the benefits and the harms of mammography for anyone who would like to know more about this.

But what one would decide about mammography screening isn’t really the point here.

The point is to urge more people to realise that these are decisions for the person who is affected by them (and who will be affected by the potential consequences of them) to make.

It is also important to understand that there is always more than one way to look at health (and birth) decisions.

There can be huge value in thinking critically about the source of information, no matter whether it is a so-called expert, a website like this one, a piece of research or a story or book based on someone’s personal experience.

There is no one right path, but it might be that engaging with the issues can help us find the path that is most right for us at that time.

If you’d like to know more, my book What’s Right For Me? Making decisions in pregnancy and childbirth explores many aspects of making health- and birth-related decisions.

Martinez KA, Deshpande A, Ruff AL et al (2018). Are Providers Prepared to Engage Younger Women in Shared Decision-Making for Mammography? J Womens Health (Larchmt). 27(1):24-31.

Stone MH (2016). The Evidence and the Decision are two quite distinct things. BMJ 2016: 353: i2452.