About Experience and Perception

The patient’s experience and perceptions complement investigations and tests.

When we assess patients’ condition, we want to understand how they perceive the situation. What does it feel like in their bodies? How does it affect their lives and emotions? This is an important part of the patient narrative that complements investigations and tests. Two patients with the same diagnosis may have widely differing experiences of their illness, the treatment and how they feel their lives are affected. 

At present, the patient narrative is not being given nearly enough attention, but it is important that it is given the same amount of attention as the medical aspect. Understanding both aspects is vital if we are to have the ability to provide every patient with the best possible treatment, rehabilitation and care.

The patient can talk about their symptoms by describing how intense the problems are as well as how often they appear and for how long. The patient can also talk about any concern, anxiety or frustration, indifference or optimism they feel regarding their condition. We as health professionals already ask lots of questions, but even if we hear the answers, we do not always listen to them properly. What is the significance of what the patient says and shows us? What does the way the patient talks tell us? How do we interpret that which is left unsaid or is said between the lines? How can we utilise this in the best possible way?

We must also ensure that we, together with the patient, and sometimes their relatives, document in brief the patient’s description of their condition so that this can be shared with other professionals that need specific information about the patient. If patients need to repeat themselves constantly, we will easily lose their confidence, as well as wasting both patients’ and professionals’ valuable time.

Patients and relatives may also have different experiences of a certain illness, or of being a patient in general. When we meet people who have lived with an illness for a longer period of time, they often have valuable experiences and knowledge of their situation. It is sometimes the case that the patient has more knowledge than the professionals. Not listening to the patient’s experience and documenting this in a patient narrative means losing out on important expertise.  

When patients feel that their perception and experience is taken seriously, confidence is created. Listening to each other benefits both parties, not just the patient but also the professionals, who are able to use their expertise in the best possible manner.