What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education, 2013, Snow et al

[Andy]

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

Abstract
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.

https://bmjopen.bmj.com/content/3/11/e003583

 

[Inara]

I find this very interesting. I encounter so much problems because I can't hide I'm informed (about my health condition, not about medicine in general), and I'm denied access to medicine that might help - I think because of that.

power imbalance

Just yesterday something like that happened - again. I then find myself left with fear, the fear to not get medication that might relief my symptoms. I can accept there is no cure, I cannot accept to not get symptom relief. If that happens, which option remains? How can you live with terrible symptoms, knowing there exists relief but it is denied because of power imbalance?

I think the medical profession needs to accept that it's good that patients are informed, and that the informed patient is the new normal, as is treating the patient as equal. I really don't understand why that is a problem. In my experience cooperation always was more successful than hierarchy.

 

[DokaGirl]

@Inara

I am sorry you can't get symptom relief drugs. It's not fair.

I agree about the power imbalance.

We get conflicting messages from the medical profession. There is much in the media about encouraging the public to know more about how to get fit, and be healthy. And yet, some health providers are threatened by intelligent patients who know a fair bit about their own health issues. I would think this would help as you say with compliance and looking after one's health in cooperation with the health provider.

Recently I talked to someone about a completely different topic, but as the conversation progressed, I learned they had worked for several decades in a health profession. This person remarked more than once that health providers think the public is "stupid".

I've come across this revealing attitude other times as well. A couple times I've heard from health profession students. One had apparently learned at university that most of the public knows extremely little about science, even the very basics. The other first year student commented that a therapy I was getting from a long time professional in the same field as this student, must be B.S. because they had never heard of it. Arrogant.

I hope you can get something to alleviate your symptoms.

 

[Hip]

If educated patients who know more about their particular disease than their generalist GPs are to be given more power to dictate what treatments they want, who then takes legal responsibility when a serious adverse event occurs as a result of the treatment?

This question will need to be properly addressed if the patient is treated an as equal in terms of their knowledge.


I think one of the reasons that doctors feel uncomfortable with letting the patient take more control, and feel uncomfortable to oblige the patient when the patient asks for a treatment that the doctor is not familiar with, is the issue of possible adverse events.

Doctors know about the risks of familiar treatments, and like all people, feel more comfortable when working with what they know.

If the treatments prescribed by the doctor are familiar ones, and are standard ones recommended by health authorities, then if there are adverse effects, it's not the doctor's fault, as he has just followed protocol.



But if a doctor agrees to help a patient try some interesting new treatment, what happens if the patient dies, for example? Or has serious averse effects which worsen their health?

 

[Wonko]

Fair enough in the UK these people are effectively untouchable, but in some parts of the world people can be, and have been, held accountable for following orders when doing so led to avoidable harm.

Following protocol leads to some twit deciding that diabetics not only don't need to, but shouldn't, monitor their blood glucose levels, and GPs attempting to enforce this by refusing to prescribe the means to do so.

Following protocol has lead to significantly worse events.

When people know something is wrong, in their judgement, they shouldn't do it, regardless of whatever orders they recieve or protocol says.

The current system, in the UK, is nuts. 'Highly trained' doctors with lots of experience being told they can't do basic things no matter what their own judgement says. It's a system designed to control, to produce mediocracy, to reduce the few good medical people down to the level of the worst, by assuming everyone is incompetent, when only some are.

As far as government is concerned doctors cannot be trusted, so rules are set, straight jackets fitted, their views are ignored, in everything, from their medical opinions in general to those re someone's ability to work, to how many hours it's safe for them (the doctors - added to clarify) to work.

Yes there are bad doctors, I have one, but the system is designed not to improve them but to remove the good ones, or at least limit them, make them as bad as the bad ones. Make them incapable of doing a good job. Making the system so no one, in power, who actually makes the decisions, can ever be held accountable - hence NICE.

All patients die. Some just haven't done so yet.

As to knowledge, it seems obvious that any patient with a chronic illness will eventually gain more knowledge on that condition than any generalist like a GP. A GP will have much more breadth, but specific knowledge? They don't live with it, they may see it for 7 minutes once every few months. Of course they know less than the patient.

As a patient it's nod, smile, leave with whatever prescription they dain to honour me with. And then buy the rest of my needs privately. Works well, at least it will do until the money runs out.

 

[Arnie Pye]

As far as government is concerned doctors cannot be trusted, so rules are set, straight jackets fitted, their views are ignored, in everything, from their medical opinions in general to those re someone's ability to work, to how many hours it's safe for them to work.

I wonder if anyone else thinks the government is trying to drive GPs away from primary care medicine in the UK. I'm not sure what they want to replace them with, but I am certain it will involve the private sector, and substantial costs to the public.

 

[Wonko]

Prescribers, nurse practitioners, over opinionated gatekeepers otherwise known as 'reception' - basically anyone who's cheaper and won't answer back when given a stupid directive.

 

[Hutan]

In my profession, standard operating procedures made an enormous difference in safety, efficiency and effectiveness. The key was getting the people who actually used the procedures to own them and improve them and for people who experienced the results of the procedures to be regularly and formally consulted.

So, I'm a big fan of guidelines in medicine. GPs and even specialists don't have the time to be experts in everything. But neither can they just accept everything patients tell them. The key is to get the guidelines to be really good, reflecting the latest best practice. To do that, the medical profession has to be proactive in feeding what they know into the guidelines. And each guideline needs to be owned by a group that includes patients.

It's hard for everyone when an individual patient is fighting with an individual doctor for better care in the 15 minutes allotted for the consultation. As many of the fights/issues as possible need to be dealt with at a higher level where there can be time to carefully look at the evidence.

One problem I see with the clinical guidelines where I live is that they are not allowed to be seen by the public. You have to be approved as a medical professional before you can access the guidelines. That really slows down the process of patients lobbying for improvements.

In the case that this paper is talking about, perhaps the problem is less that the doctors were ignoring the patients' expertise and more that the clinicians who had the new, improved knowledge about DAFNE had not made sure that it was included in a clinical guidance document and then adequately publicised it.

 

[Hip]

In countries with socialized medical systems like the NHS, another issue with giving more power to patients dictate the treatments they want is the cost.

Every patient would like the latest (and often very expensive) new drugs or treatments; but in socialized medicine there is a limited amount of money, and the standard portfolio of treatments that medical authorities like NICE stipulate can be used for a given disease reflects the cost of treatment as well as the evidence base and issues like safety.

So you can imagine the complexities that would ensue when an expensive treatment is ask for. From reading ME/CFS forums, I've seen how patients in the US often spend considerable time and effort to get their insurance companies to pay for an expensive treatment. Sometimes it can take years of effort to get your insurance company to agree to fund a treatment that you want.

 

[ScottTriGuy]

...the clinical guidelines where I live is that they are not allowed to be seen by the public. You have to be approved as a medical professional before you can access the guidelines.

 

[Inara]

If educated patients who know more about their particular disease than their generalist GPs are to be given more power to dictate what treatments they want, who then takes legal responsibility when a serious adverse event occurs as a result of the treatment?

The law regulates responsibility. It is the patient that makes the decision, and it is the patient who has the responsibility for it. Therefore the law demands that the doctor informs about effect, side effects and options so that the patient can make an informed decision. In fact, at least in Germany, the law suggests the patient is the decision maker and the doctor the counselor. That's where the law about medical errors jumps in - if it is proven that a doctor gave bad counseling - against common knowledge, i.e. he could and should have known better - then the responsibility lies with the doctor.

I think many people don't grasp this, and that's maybe why they accept a doctor as the leader and decision maker. And a lot of doctors don't understand this, and that's maybe why they often don't inform the patient properly (in that case, the responsibility falls into their field, but it is infinitely difficult to prove a medical error). If you let the doctor decide for you, the outcome is still your responsibility. Therefore it is crucial to be properly informed. If doctors don't fulfill their duty, the patient has to get information from somewhere else. That's exactly what so many doctors despise.

I don't want to bear responsibility for a decision others made for me. I want a constructive doctor-patient-relationship where I know the doctor gives me the best possible counsel so that I can make an informed decision and take responsibility for it.

Edit: It's not about patients who dictate. That isn't equality in my eyes. And it won't work. It's a partnership, where ideally the doctor gives the knowledge and the patient then decides. So, ideally, the patient doesn't have to collect any information from somwhere else.

 

[DokaGirl]

I cannot think of any medical or dental experience when I have been fully informed. There is always something left out, I learn about later. For example, "How long to heal from this surgery?" "Six to eight weeks.""Hello doctor, I'm doing OK, but not healed yet." "Well actually it takes most people 12 weeks to heal." In my experience medical and dental professionals don't advise thoroughly enough of the downsides. Another example would be hospital discharge instructions, sometimes so vague to the point of being unintentionally misleading.

 

[Hip]

Therefore the law demands that the doctor informs about effect, side effects and options so that the patient can make an informed decision. In fact, at least in Germany, the law suggests the patient is the decision maker and the doctor the counselor.

I believe patient-doctor relations have changed quite a bit in the last 50 years, with doctors now taking lots of time to explain the various treatment options available to the patient, allowing the patient to decide. As opposed to the traditional approach where the doctor is assumed to know best, and decides for the patient.

As a population, we are all a lot more analytical these days, so most of us can come to good decisions for ourselves, given the right information.


But there is a difference between (1) letting the doctor explain the options so that the patient can decide, and (2) the patient himself now laying out the options, because the patient actually knows more than the doctor about his particular disease.

It's this latter situation that the paper in the first post of this thread examines.


An analogy might a diner going to a restaurant and asking the waiter what dishes are available. The waiter describes what's on offer, and out of the dishes on the menu, the diner chooses what he wants to eat.

But imagine going into a restaurant and giving the waiter a set of cooking instructions and a recipe, and saying to the waiter: "please get your kitchen to cook the food exactly according to my instructions and recipe". I don't think many restaurants would be happy for customers to do that. But that's what happens with knowledgable patients.

As the paper says:

Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions

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.

It's this being uncomfortable with trusting a patient's expertise that seems the key issue.