Doctor knows best: view called paternalistic and often dangerous by experts who urge for equal relationship

Clinicians have been urged to move away from the “doctor knows best attitude” when diagnosing illnesses as experts call this a “paternalistic, and often dangerous” view which should change “to a more equal relationship” where patients’ lived experiences are taken on board.

A study by the University of Cambridge and Kings’ College London found a patient’s view of their own symptoms or illness is not valued by the majority of clinicians, and explored the value given by clinicians to 13 types of evidence used when diagnosing patients, including the likes of brain scans and patient views.

They surveyed 676 patients with neuropsychiatric lupus (NPSLE), which according to the researchers is “challenging to diagnose”.

Lupus is a chronic condition that impacts the immune system, causing problems with the skin, joints, kidneys and other organs. NPSLE is when the condition affects the brain, spinal cord or other nerves, with symptoms such as seizures, strokes and psychosis.

Some 46% of patients said they were never or rarely asked for self-assessments of their disease, while 24% said their self-assessments were never or rarely consistent with their clinician’s.

Lead author Dr Melanie Sloan, of the Department of Public Health and Primary Care at the University of Cambridge, said: “It’s incredibly important that we listen to and value patients’ insights and their own interpretations of their symptoms, particularly those with long-standing diseases – after all, they are the people that know what it is like to live with their condition. But we also need to make sure that clinicians have the time to fully explore each patient’s symptoms, something that is challenging within the constraints of current health systems.”

Researchers asked 291 clinicians to rank the most important methods for diagnosing NPSLE. Their own assessment was top (44.7%), followed by the presence of other disease symptoms (39.2%) and abnormal brain imaging (38.8%).

Asking a patient for their view was ranked in the three least important steps by 48.1% of clinicians and in the top three most important by 3.8%.

Sue Farrington, co-chair of the Rare Autoimmune Rheumatic Disease Alliance, said: “It’s time to move on from the paternalistic, and often dangerous, ‘doctor knows best’ to a more equal relationship where the patients with lived experiences and the doctors with learnt experiences work more collaboratively.”

However, some clinicians, such as psychiatrists and nurses, valued patient opinions, researchers said.

One psychiatrist interviewed for the study told the team: “Patients often arrive in clinic having had multiple assessments, having researched their own condition to a very high level and having worked hard to understand what is going on with their own body… they are often expert diagnosticians in their own right.”

Senior study author Dr Tom Pollak, of the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, added: “No human being is always going to be able to accurately pinpoint the cause of symptoms, and patients and clinicians can both get this wrong.

“But combining and valuing both views, especially when the diagnostic tests aren’t advanced enough to always detect these diseases, may reduce misdiagnoses and improve clinician and patient relationships, which in turn leads to more trust and more openness in symptom reporting.”

The study formed part of the Inspire research project and was funded by The Lupus Trust and Lupus UK.