Medical paternalism, where “doctors know best” and patient views and opinions are considered to be of lower importance, is viewed as increasingly unacceptable. We are in an age where patient-centred care and shared-decision making is encouraged between doctors and patients, but is this actually happening?
Our study, led by Cambridge University and Kings’ College London, is focused on lupus, one of the most challenging autoimmune diseases to diagnose, to manage and to live with. Over 1,000 patients and doctors worldwide took part in the study. The results showed many areas where patient reports were under-valued.
The doctors were asked to rank 13 types of evidence used to diagnose neuropsychiatric lupus, a type of lupus that affects the brain and nervous system. This included blood tests, observations by family or friends, and patient views.
Even though the doctors often acknowledged that they didn’t know much about lupus and that tests were often not accurate, they ranked their own assessments and diagnostic tests highest. Patient self-assessments were ranked the lowest.
Less than 5% of doctors ranked asking patients for their self-assessments (whether their disease was flaring) in the top three types of evidence in diagnostic decisions. This is despite many lupus symptoms – such as headache, hallucinations and depression – being invisible and not testable, and so only captured through self-assessments.
Doctors and patients gave many examples where “subjective” symptoms had been ignored or misdiagnosed. Where this happened, patient trust in doctors was usually lost, and some misdiagnoses had led to permanent disability and even death.
Almost half (46%) of the 676 patients reported never or rarely having been asked for their self-assessment of their disease activity. Many patients discussed feeling that their symptoms were not believed unless they were visible to the doctor or validated by test results.
One patient shared how “degrading” this felt, and added “when I enter a medical appointment and my body is being treated as if I don’t have any authority over it and what I’m feeling isn’t valid then that is a very unsafe environment”.
‘Objective’ doesn’t necessarily mean ‘accurate’
The results of this study raise the question of why “objectivity” is often given much more weight in medicine than “subjective” patient reports and views. Part of the reason may be due to a mistaken belief that objective is similar in meaning to accurate.
In reality, objective tests in lupus and other rheumatology diseases can be unrevealing or even misleading. For example, brain scans, even in patients with severe neuropsychiatric lupus, are often completely normal.
Objective test results can be wrong and subjective self-interpretations can often be right.
We must also consider that if a patient is classified as doing well in objective tests (such as blood tests) but feels subjectively very unwell, is the subjective view not more important in terms of the patient’s quality of life?
Doctors face major obstacles in making accurate assessments due to limited resources, including short appointment times, making it difficult to discuss all the patient’s symptoms. We found in our earlier research that mental health symptoms in lupus and other rheumatology diseases were much more common than doctors realised.
Doctors are often having to make assessments with limited knowledge. They know less about a patient’s symptoms than the patient experiencing them, and this can be compounded by patients not telling their doctors about many of their symptoms due to fear of stigma and misdiagnoses.
Although doctors try to be as objective as possible, no human being can be wholly objective (not influenced by personal feelings or opinions). Our study found evidence that patients’ and doctors’ personal characteristics, particularly gender, may be influencing diagnosis.
This included male doctors being statistically more likely than female doctors to feel patients over-played their symptoms, and reports that female patients received more psychosomatic “in your head” type misdiagnoses.
Many of the symptoms patients told us about – such as increased nightmares, tingling all over, severe fatigue, or feeling “spaced out” before a lupus flare-up – cannot be seen or confirmed by investigations. They are also not on the formal diagnostic criteria.
Patients need to be involved in diagnostic criteria
Historically, doctors decided and wrote disease diagnostic criteria and designed research studies without involving patients’ views. Times are fortunately changing and there is now more research where patients are fully involved at every stage as equals.
Hopefully, diagnostic criteria will soon then reflect the reality of patients’ symptoms so that patients and doctors will know which symptoms to look out for and discuss together.
There were positive doctor-patient relationships discussed in the study interviews. For example, one patient told us “[My rheumatologist] knows and recollects every single symptom I have ever told him … he tries to put it together and listens to us so well.”
However, the study found patient views tended to be overlooked. This research highlights that patients may often, although not always, be “expert diagnosticians in their own right”, as one of the psychiatrists interviewed said.
Both views in medical relationships – patients’ depth of “lived” experience, and doctors’ breadth of “learned” experience – need to be respected and valued. This may reap many potential benefits, including quicker and more accurate diagnoses. Stronger collaborative relationships would also ensure more patients feel heard and validated, and lead to greater trust and satisfaction – for both patients and doctors.