Good medical practice is about many things, one of the most important of which I reckon is simply listening. I can’t tell you the number of times individuals have told me they said something potentially important to their doctor, only for it to be either dismissed or simply ignored. Some patients end up being castigated for having the ‘temerity’ to perhaps suggest something (such as a diagnosis) that was not thought up by their doctor or was not consistent with the opinion he or she had already given. I’m not sure this makes for the best health care.
One of the first patients I ever saw when I started in practice was a diabetic who claimed that she could tell from her vision what her blood sugar levels were doing. She claimed that the amount of ‘mistiness’ of her vision correlated well with her blood sugar levels as measured using a meter. When she told her doctor about this he told her she was talking ‘rubbish’ and that this ‘just can’t happen’. But how could he have possibly known that, is my question. Of course he can’t: it’s an opinion, and in expressing it in the way that he did he also risked jeopardising his relationship with his patient too.
Now, in this specific instance, the effects of the failure of this lady’s doctor to listen to her and believe her were unlikely to be too dire. I mean the exchange may well have led to some irritation, upset and loss of respect, but it’s unlikely that the lady would come to much harm as a result of this. However, in healthcare failing to listen to patients can have significant negative consequences, and my blog today is specifically about an example of this. If you are a practising doctor or dietician, you may want to avert turn away now.
I saw a 4-year-old girl in practice this week, brought in by her parents. The mother did most of the talking. In the last year, the girl had developed chronic diarrhoea. The mother decided to keep a food diary and through this thought she had identified wheat as the cause of her daughter’s diarrhoea. She eliminated wheat from her daughter’s diet, and the diarrhoea resolved.
Meanwhile, the girl had been referred to a gastroenterologist. When they consulted him, he recommended that the girl be tested for coeliac disease (gluten sensitivity). The test came back negative, though there was some talk that because the child had not been eating wheat (wheat is the main gluten-containing food in the UK diet) at the time of the test, that the test might have missed the diagnosis (in other words, the test may have given a ‘false negative’ result).
The girl was referred by the gastroenterologist to a paediatric dietician. The mother gave the history again (wheat in the diet – diarrhoea, no wheat in the diet – no diarrhoea) and despite this, the dietician recommended a diet rich in grain including wheat. The child’s parents thought this was odd (given the history), but resolved that health professionals must know what they’re doing and went on to their daughter on the recommended diet. Loe and behold, the diarrhoea returned.
Not keen on the idea that she was knowingly feeding her daughter a diet that was clearly making her child sick, the mother matters into her own hands again and re-eliminated wheat from her daughter’s diet. Again the diarrhoea resolved.
After this, it was time to go back to see the gastroenterologist. The mother gave the story again, with the addendum that the dietician had recommended a diet which made her child sick, so she had reverted to the original diet and her child appeared to be well again. The gastroenterologist, instead of saying ‘thanks for doing my job for me’ berated this woman for being ‘irresponsible’ for taking her daughter’s diet and health into her own hands.
In a degree of desperation and confusion with ‘I’m a bad mother’ thoughts circulating in her head, the mother brought her to me to seek my advice. I pointed out that I’m not sure she needed my advice, as it was obvious (to me, at least) that she had handled her child’s health issue as logically and responsibly as any mother could.
She mentioned that part of the reason that she was unsure about whether she’d done the right thing is because she didn’t have a ‘scientific background’. I pointed out that both the doctor and dietician may be regarded as people with a scientific background, but look where that had got this mother and her daughter.
The fundamental problem here was that neither the doctor nor the dietician had listened to this child’s mother. She maintained to me she had given a very clear story to these people: wheat in the diet caused the child to have diarrhoea, while with no wheat in the diet the child was well. It’s not rocket science.
What is it, though, that causes health professionals to sometimes ignore what patients are telling them, even when it’s blindingly obvious the best thing to do is listen?
Some of the issue here, may relate to an inability to get out of one belief system and into another. If, for instance, someone erroneously believes that a diet rich in grain and wheat is healthy, then it can be a bit of a stretch for them put that to one side, even when sitting before them appears to be a classic exception to their ‘rule’.
Another issue that I think is all too common in medicine is the idea that we health professionals are the ones that know about health, and if someone encroaches on that we can feel like our position has been somewhat usurped. I, like some other practitioners, welcome suggestions from my patients. Not only is it an opportunity to learn, I’ve found they’re almost always right too.
Now just imagine for a moment what would have happened if this mother had, in the long term, taken the advice to feed her daughter the very food that is clearly provoking her diarrhoea? Not only do we have a sick child, but we now have a mother who may feel inadequate for ever doubting the opinion of the health professionals from whom she has sought advice. Not an ideal situation, at the root of which were a couple of health professionals who did a lot of talking but not a whole lot of listening. Fortunately, the mother in the end decided to do some selective deafness of her own.
There’s an addendum to this story I’d like to add. Near the end of the consultation the father of the child told me he had been appalled by the standard of medical care they had been offered (and rightly so, I think). He then recounted an interesting story: after the birth of their first daughter (the daughter with the wheat sensitivity was number two) the mother was quite unwell. She was extremely tired and lethargic, and was found to have some abnormal findings on her ECG (heart trace). The doctors were unable to find out what was wrong with her. The father, in desperation, ‘googled’ his wife’s symptoms and through this came up with a possible diagnosis of hypothyroidism (low thyroid function). He took the diagnosis to his wife’s doctors and asked them to test specifically for this condition. Sure enough, it turned out to be what was wrong with her. By the end of the consultation, I was beginning to wonder whether these parents in front of me had missed their vocations.
As I said, good healthcare is about many things, but I reckon an essential part of this is listening to and honouring our patients experiences and opinions. We health professionals ignore our patients at our, and our patients’, peril.