The Social Life of Decisions
Listening and watching is helping us to understand and inform how patients, practitioners and policy makers make up their minds, explains Dr Tim Rapley, presenting at the SPHR@L seminar on 30th May 2013
I recently watched a video of an elderly lady, supported by her daughter, having a consultation with her GP. They’re discussing how she might change her medication to reduce her risk of stroke. At one point, the GP asks the elderly lady some questions and her daughter steps in, translating. She’s trying to make clearer to her mother what the GP is saying so her mum can grasp better what’s going on. But the GP is unhappy. He tells the daughter that he is seeking her mother’s views, not hers.
This vignette goes to the heart of my work. I am trying to throw light on how people, practitioners and policy makers in the health field make decisions. If we understand that, we can support them so that they have the right information at the right time.
In this case, the GP mistakenly assumes that the best decision the elderly lady can make is one without outside interference. However, in reality, she needs additional support such as reframing the questions as well as the provision of extra information. Her daughter is enhancing her mother’s capacity to make a good choice, not, as the GP fears, hampering it.
There is an intricate and fascinating social life of decision-making. It can involve a lot more than simply turning options over on our own and concluding what we think or what we want to do. We may get to an answer by interacting with a variety of other people and information sources, using many different ways and often over varying amounts of time.
For example, our team has been working on an Arthritis Research UK-funded study at Newcastle University’s Institute of Health and Society. We have been asking people, aged between 16 and 24, with a range of types of arthritis, about which drugs they take. Who do they talk to, when deciding?
These are young people who define themselves through their independence and autonomy. A massive surprise is that mum is, typically, still very central to their decision-making process. If mum’s not around, they might talk to dad. Or it might be gran or someone else who plays the role of mother. Outside of that, family might be key or, when it comes to friends, it will often be just one person, usually someone who has experience of chronic illness, who will not see this discussion as strange or abnormal. So there is a hierarchy and a limited, explicit domain of ‘trusted others’. We need to understand more about all this, because, as in this case, we may be surprised. And poor understanding means that we may fail to support decision-making effectively.
All this raises an interesting question about whom do these ‘trusted others’ trust? In other words, how do these often vital advisors glean their knowledge and develop their advice? We have observed, for example, another elderly woman trying to decide whether to take part in a clinical trial. When her daughter first hears about it, she says to her mum: ‘I don’t think you should do that.’ But then the daughter speaks to a colleague at work. That colleague’s mother has had a very positive experience in a trial. So the daughter phones her mother back in the evening, asking her to tell her a bit more about the trial. Eventually, the daughter says she thinks that the mother should go for it, as long as various issues are sorted out.
This complex social life of decision-making does not apply solely to individuals. Diverse and hidden processes also characterise groups. Take, for example, committees that sanction use of drugs at a hospital level – another focus of the research. How do they make up their minds? We find that there is, of course, formal evidence about a particular drug, information about costs and consideration about the influence of the drug company reps. There is discussion about whether they consider the doctor to be a decent person who is going to do the right thing. But often what’s gone on before the committee meets is as important as anything said during the session. ‘Corridor’ talk can be just as vital in these decisions as it may be to patients chatting to friends or having a chance discussion with a stranger.
Looking to a higher level of decision-making is also revealing. We explore how national guidelines are developed, for example by groups like the National Institute for Clinical Evidence. NICE talks a lot of about evidence. That’s fair – this is at the heart of their work. But the evidence is always tempered by what is practically and politically possible. In short, their decisions are imbued not simply with evidence but with context and feasibility. That’s sensible and useful. But it is good to understand it explicitly.
Why does all this matter? First, it’s important to help decision-makers to reflect on the methods that they use. We’re not trying to tell them how to do it. But, if they better understand the reality – rather than just the theory – of what happens, they may want to improve on it.
Secondly, if we understand the different sources and people used to help decision-making, we can help to make those sources better informed and more reliable. For example, it may encourage us to design information and to disseminate it not only for patients but for those from whom they are likely to seek advice. If we know people will use the internet for information, we can direct them to reliable sites.
We can also design web-based resources to engage with flexible use. For example, rather than focussing simply on the physical issues related to a disease, there might also be information about emotional issues, about benefits, social care and other welfare questions. There might be details about changes in identity and some of the big biographical impacts of the disease. So patients – and their trusted others – are being offered many layers and flexible ways to navigate through dilemmas, rather than a single, pre-determined route.
In all of these areas – patients, practitioner committees and the setting of national guidelines – decision-making involves on-going, many-layered conversations that are more sophisticated than is often appreciated. The challenge is to understand these conversations better and to enrich and inform them further.
Dr Tim Rapley is lecturer in medical sociology at the Institute of Health and Society at Newcastle University. To find out more about his presentation at SPHR@L, email email@example.com