BMJ: What happens when patients know more than their doctors?

[natasa778]

What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study

Objective To explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with doctors and other healthcare professionals.

Design Qualitative user-led study using longitudinal interviews and 146 h of participant observation. Data were analysed using a narrative approach.

Participants 21 patients with type 1 diabetes, those either about to attend a patient education course or those who had completed the course in the previous 10 years.

Setting Established patient education centres in three UK teaching hospitals teaching the Dose Adjustment for Normal Eating (DAFNE) course.

Results Both postcourse and several years later, most participants spoke of the experience of taking part in education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes. However, interactions within the health system following patient education could be fraught. Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients' ability to continue effective self-management.

Conclusions Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise.

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[Esther12]

Thanks. Interesting.

 

[biophile]

They get dismissed as know-it-all heartsink patients? They also start writing critical letters to the BMJ!

 

[Iquitos]

"Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise."

How very true.

 

[peggy-sue]

...and the gp learns to rock back in his/er chair, hands behind his/er head, and sneers in an attempt to try to re-establish his/er percieved authority... by using intimidating body language as well as refusing to help...

 

[Sean]

...and the gp learns to rock back in his/er chair, hands behind his/er head, and sneers in an attempt to try to re-establish his/er percieved authority... by using intimidating body language as well as refusing to help...

I get that done to me, and I am a large-ish, hairy male with a deep voice, who is not willing to take shit from bullies. I can only imagine how much worse it can be for less physically imposing people, and especially females dealing with an unsympathetic male doctor.

 

[SOC]

I love (NOT) the way medicine has created it's own dismissive word for paying customers who are not suitably submissive and respectful -- noncompliant.

Okay, I know the word has other purposes -- for diabetic patients who won't follow dietary restrictions, or heart patients who won't take their medicine, for example. Still, the term is used so disrespectfully and dismissively that it loses even it's semi-useful meaning. After all, there are a lot of legitimate (or somewhat legitimate) reasons patients are "non-compliant". Maybe the medication has unacceptable side effects, or the patient is so disabled that maintaining a strict diet is extremely difficult. By labeling the patients "non-compliant" they allow themselves to dismiss the patient without actually trying to solve the problem.

In engineering we don't get to dismiss clients as "non-compliant" if they don't do exactly what we ask, or what is easiest for us. We are hired to solve their problem. That's what they pay us for. If we can't solve their problem, we tell them so and hopefully explain why. We don't get to slap an insulting label on them and ignore them. We could, I suppose, but first of all, we're not trained to treat clients that way, and second, we wouldn't stay in business very long. And we'd lose the respect of our colleagues -- unlike doctors who seem to gain more respect by treating their customers with disrespect.

 

[Dolphin]

Interesting

Unless you're an academic/similar*, you can probably skip the introduction, etc. and start reading at the results section on p4.

* Personally I find reading full papers interesting to educate myself, learn about methodologies, etc.

 

[MeSci]

I love (NOT) the way medicine has created it's own dismissive word for paying customers who are not suitably submissive and respectful -- noncompliant.

Okay, I know the word has other purposes -- for diabetic patients who won't follow dietary restrictions, or heart patients who won't take their medicine, for example. Still, the term is used so disrespectfully and dismissively that it loses even it's semi-useful meaning. After all, there are a lot of legitimate (or somewhat legitimate) reasons patients are "non-compliant". Maybe the medication has unacceptable side effects, or the patient is so disabled that maintaining a strict diet is extremely difficult. By labeling the patients "non-compliant" they allow themselves to dismiss the patient without actually trying to solve the problem.

In engineering we don't get to dismiss clients as "non-compliant" if they don't do exactly what we ask, or what is easiest for us. We are hired to solve their problem. That's what they pay us for. If we can't solve their problem, we tell them so and hopefully explain why. We don't get to slap an insulting label on them and ignore them. We could, I suppose, but first of all, we're not trained to treat clients that way, and second, we wouldn't stay in business very long. And we'd lose the respect of our colleagues -- unlike doctors who seem to gain more respect by treating their customers with disrespect.

Most of the 20-plus years I was in employment involved dealing with the public in one way or another. Sometimes customers/clients were stupid and annoying. But if we were rude to them, we would be disciplined and possibly sacked. It was regarded as totally unacceptable.

But doctors seem to be on another plane of existence.

It's interesting that the problem occurs in a country where healthcare has to be paid for by patients/their insurance companies. One might have expected that where patients could choose their doctors, the doctors would have to behave well towards them due to the risk of losing business.

Some of us here are scientists, better-qualified and more knowledgeable in medical science than the doctors on whom we are forced to rely. Yet doctors seem to think it inconceivable that a patient could be a scientist.

This article describes eloquently the experience of a consultation between a disabled scientist and his doctor.

When I obtained a copy of my medical records (which were full of errors) I noted that a GP had written something like "patient is studying human biology!" including the exclamation mark. I will never know whether the exclamation mark indicated amusement, sneering, astonishment or something else.

 

[Esther12]

When I obtained a copy of my medical records (which were full of errors) I noted that a GP had written something like "patient is studying human biology!" including the exclamation mark. I will never know whether the exclamation mark indicated amusement, sneering, astonishment or something else.

I felt so relieved when I read my medical records. They were full of errors and snide comments from medical staff... but none of the errors happened to be that damning for me. Given the way that many assume medical records are more accurate than the claims of a patient, and discrepancies reason to distrust a patient (particularly if the have a diagnosis of CFS or similar) I felt like I had got off pretty lightly.

It was strange seeing so many (5-8?) weird and false claims made so matter of factly about myself. Some of them I felt they must have got me confused with someone else. It's another potential danger of medical records going electronic and being used for research. Random nonsense made up by medical staff=> medical records=> research findings=> doctors=> affects judgements about what to put in medical records=> research findings=> findings confirmed=>

 

[MeSci]

I felt so relieved when I read my medical records. They were full of errors and snide comments from medical staff... but none of the errors happened to be that damning for me. Given the way that many assume medical records are more accurate than the claims of a patient, and discrepancies reason to distrust a patient (particularly if the have a diagnosis of CFS or similar) I felt like I had got off pretty lightly.

It was strange seeing so many totally false claims made so matter of factly about myself. Some of them I felt they must have got me confused with someone else. It's another potential danger of medical records going electronic, and being used for research. Nonsense made up by medical staff => medical records => research findings => doctors => affects judgements about what to put in medical records => research findings

One thing that caused me anger and distress was a claim in my records that I had put my extensive bruising following my overdose down to "falling around having taken a lot of alcohol in the last few days." This was completely untrue - the bruising had been due to repeated falling due to the effect of the overdose, and I was not in the habit of getting drunk and falling around. It presented an extremely inaccurate and derogatory image of me. My alcohol intake was also exaggerated elsewhere.

My first severe attack of hyponatraemia was described as a panic attack.

An endocrinologist referred to my scientific knowledge about my condition disparagingly as ‘internet knowledge’! I have a Master's degree in medical science! (He has a BSc in medicine, yet is regarded as an eminent expert in his field.)

 

[Esther12]

My errors were all just weird and random. Giving me hobbies I'd never had and so on. There was some really irritating stuff from when I was basing my life around their GET suggestions, and yet they were talking about my embrace of the sickness role (or something like that). lol - at that point I was so desperate to recover that I was even following their quack advice, but to them, the failure of GET to lead to the recovery they were told to expect clearly indicated I just didn't want to get better.

 

[MeSci]

 

[Iquitos]

I received a copy of my interview with a "specialist" in cfs and it said I had had breast implants!!! Not true and we never had any conversation mentioning such!

 

[MeSci]

I received a copy of my interview with a "specialist" in cfs and it said I had had breast implants!!! Not true and we never had any conversation mentioning such!

I hope you're a woman at least!

I read a news item recently about a man getting a demand for repayment of some kind of benefits he'd allegedly had when pregnant, or something like that! (In Spain, perhaps?) He was amused.

 

[Esther12]

I received a copy of my interview with a "specialist" in cfs and it said I had had breast implants!!! Not true and we never had any conversation mentioning such!

lol - yeah, that's the sort of stuff I had. Just random weirdness. A couple of times where a joke had been taken seriously too (probably my fault - must remember that a CFS diagnosis means that one is held to different standards).

 

[Firestormm]

I received a copy of my interview with a "specialist" in cfs and it said I had had breast implants!!! Not true and we never had any conversation mentioning such!

Err... was 'he' full of imaginings