Hanne Kjöller: What should the doctor do if the choice is between offending or harming the patient?
When a doctor questions a patient's perceived symptoms, she may feel distrusted or overlooked. But what if confirming illness only makes suffering worse?
COLUMN. Hanne Kjöller is a nurse, journalist and freelance columnist [...].
In emails, doctors with experience of cultural diseases and functional symptoms usually claim the importance of never offending the patient. But what does that mean? That you must not question the patient's own perception of their symptoms, what caused them and what this collection of symptoms should be called?
I think I dare say that there is now a fairly good consensus that the name, the diagnosis you give to label the individual's suffering, affects the course of the disease. Someone who is told that there is a good chance of recovery will, at a statistical level, have a better chance of recovery than someone who receives a diagnosis with a more hopeless course.
The symptoms are more or less the same in all the different cultural diseases of the world and of all times [...].
In Sweden, it is not uncommon for a patient seeking help to arrive with a Google printout of exhaustion disorder and a conviction that this is the disease she is suffering from. In Norway, where exhaustion disorder does not exist as a diagnosis, a patient with the same symptoms would more likely have brought a printout on chronic fatigue syndrome, ME.
Although the mythology surrounding the Swedish diagnosis of exhaustion, such as the shrinking of the brain and the importance of resting - and resting for a long time - leads to long periods of sick leave, this is nothing compared to the expectations that come with an ME diagnosis. There is, says the ME lobby, no cure. With the diagnosis, says PhD student Live Landmark when I speak to her, the patient is deprived of all hope.
Images of bedridden, nappy-clad patients who are tube-fed and never recover become so heavy for the patient to bear that some choose to end their lives.
Live Landmark, who has been diagnosed with ME, has a different story. It started with an infection and subsequent symptoms that no one could explain. She read about ME in the newspaper and after an investigation she was diagnosed. The doctor, a specialist in neurology, explained that the disease was serious and the prognosis was bleak.
Nobody recovered. Somatic care had no help to offer.
Ms Landmark turned to psychiatry. When even that failed to help, she started looking for alternative treatments and eventually found a clinic in London. There she learnt about the body's stress response and how the brain simply creates physical symptoms such as fatigue and pain. And that it is possible to get healthy.
Healthy, and with a new narrative, she travelled home to Norway where ME is spreading epidemically. Several hundred young people are now diagnosed every year and in a couple of years the use of the diagnosis of ME has increased by 500% in our western neighbour - a development not seen anywhere else in the world. She brought with her the UK course and a new, more hopeful narrative that help is available. She thought patient organisations would be delighted. It's safe to say they were not.
Doctor, researcher and journalist Henrik Vogt describes the more or less militant battles over the cultural diseases of our time in Aftenposten. The whole thing, he writes in a column, boils down to the question: "Does or does not the suffering person himself - with his experiences, burdens, actions, thoughts and social relations - in some way, consciously or unconsciously, have something to do with the causes and development of ill health?"
The patients are suffering and deserve to be understood like all other sick people. The only question is what kind of understanding, writes Henrik Vogt. Should the human body be seen as an advanced machine, where the patient is a passive actor who suffers from machine failure, which is the attitude of ME activists. Or biopsychosocial: where experiences, thought patterns, actions and social interaction are important for understanding how the immune system and the entire body are affected?
Henrik Vogt explains: "When patients say that they want to be believed, it is often not only a matter of the doctor taking the symptoms seriously, but also confirming a 'mechanical' causal relationship - which today must be said to be an unscientific approach." In the absence of such confirmation, patients may claim that they have been mistrusted or neglected. Or even offended.
This brings us back to Hippocrates and the doctors who believe that doctors must not offend patients at all. If this means not confirming the patient's view of causality, it can lead to harm instead. How can that be more ethically defensible?
She has been talking to Landmark and Vogt, apparently.
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