How does the body contribute to people’s decisions about whether to go and see the doctor?
By Meredith Hawking
Our recent study explores how people make decisions about whether to seek medical attention. This can happen when they experience unusual or new sensations that they can’t make sense of. Understanding how people decide to see a doctor is important as many people face barriers that prevent them from seeking help when they need to. Some people find it harder to communicate with those around them about the bodily sensations they may be experiencing or may not be diagnosed appropriately by health care professionals. This can lead to inequities in care and health outcomes.
To date, most research has framed decision making as a cognitive process undertaken autonomously by an individual. Much less research has explored the role of the body itself in these decisions, and how others might be part of the decision making process.
In our project, we asked adults to tell us their story about a condition called atrial fibrillation, which is where the heart beats out of rhythm. With atrial fibrillation, some people experience debilitating symptoms, whereas others experience none. Additionally, some patients may experience short periods of symptoms which can make the condition hard to diagnose.
17 people took part and told us their atrial fibrillation stories. We examined these narratives and analysed how the body and decisions featured in these accounts. We considered how the body and its parts (organs, fluids, excretions) interacted with people and objects in the patient’s surroundings to lead to a decision to seek help.
There were common story lines, or ‘threads’ that featured in people’s journeys towards a diagnosis of atrial fibrillation. Some people experienced a ‘big event’ – a sudden disruptive and unforeseen event such as a heart attack or stroke. Some stories involved a ‘chance find’, where a clinical appointment for an unrelated concern led to a surprise diagnosis. Others experienced a ‘long road’, a more difficult journey towards diagnosis, with repeated attempts to seek help.
In the stories, people described drawing on shared or collective interpretations of what was normal or abnormal for them. This resulted in the emergence of a ‘body-in-need-of-help’ (a potentially ill body) that needed medical attention. The process involved: sensing and being of the body; discussing sensations with other people; experiencing the body interact with material objects and their surroundings; collective observation of the body; and examination of bodily fluids. People used powerful bodily metaphors to convey the sensations they were experiencing to those around them. This collective decision making process involving the patient and other actors over time is known as ‘distributed decision making’.
Some people were incapacitated by their symptoms, so in these cases the ‘body-in-need-of-help’ was primarily enacted by other people. We found technology also played an important role. Medical devices (e.g. heart monitors) recreated the body as having potential for illness in medical spaces where previously it did not. These technological representations provided ‘proof’ for patients who struggled to achieve a diagnosis.
Our paper opens new avenues for thinking about how decision making gets done in practice and challenges dominant conceptions of individual decision making. Instead, we show the central role of the body, other people, and material and technological actors in the journey towards diagnosis.
‘Seeking help for atrial fibrillation: the role of the body in distributed decision making’ by Meredith K.D. Hawking & Deborah Swinglehurst. Social Science and Medicine 2024. You can read the paper in full for free, here.