Helen Macdonald: How we label life experiences can lead to overdiagnosis

Helen Macdonald wraps up some final thoughts from the last day of Preventing Overdiagnosis

Once, grief was viewed as the price we pay for love. But now prolonged grief is a condition affecting around 1 in 10 of those with grief. Sociologist Anders Petersen talked about how societal values and the times that we live in, can help us understand overdiagnosis and used grief as an example to illustrate this.

There is a tendency among doctors, patients, and the public to want to label life experiences. Psychiatry has pledged its allegiance to a medical model, and evaluates the human condition through the lens of diagnoses, he said. Resources for healthcare, or other help, are often tied to a diagnosis. The language of diagnostics has spread from textbooks into common parlance. People are more individualistic, and suffering such as grief prevents them from getting on with their lives. So grief can be seen as a dysfunction that needs to be repaired, he said. People understand that if they are suffering, it is wrong, they need treatment, and that begins with diagnosis. So the diagnosis of prolonged grief can be a logical, rational thing, in keeping with institutional practices. Of course this is only one side of the story. Some in the room thought it could be overdiagnosis.

Petersen’s was one of a collection of talks on psychiatric diseases. Olga Runciman (psychiatric nurse, psychologist, and patient) is not the kind of person searching for a label, quite the opposite. She said it can be almost impossible to get rid of an unwanted diagnosis, such as her label of schizophrenia. The dominant society (in this case, medicine) has the power to define things for people.

Sometimes medicine can lack context, she explained. In a very moving description (which I can do no justice to here) she described an example of a woman whose experiences of abuse played out in her actions when she was extremely distressed. She said how difficult it can be to have forced treatment, and to have little say over a diagnostic label applied to you (although it can have lifelong consequences). Her contribution to the conference was a reminder of the essential contribution of patients and the public. It made me question how often (or at least how well), I have involved patients in discussions about what their diagnosis is (and how much more complex this might be when people are distressed, or disorientated).

Allen Frances (psychiatrist and former chair of the DSM committee) suggested that psychiatric diagnosis should be written in pencil, and that doctors should take time as they write them. It is “easy” to make diagnoses, or start medication, but hard to get rid of them or stop them. Labels can be sticky. It would be better if GPs had a bigger role in guidelines, he suggested, compared to specialists.

Overdiagnosis is the most important story in health today, he said. It needs more press, but it struggles to find a way onto the front pages. We need to work out how to do the slingshots, he said, because the goliath is very big and we are awfully small.

See www.preventingoverdiagnosis.net for more information on the conference and this year’s speakers. BMJ is a media partner for the conference. It is linked to our campaign on Too much medicine.

Helen Macdonald, clinical editor, The BMJ, and general practitioner.

Competing interests: None declared.