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

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

 

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.

 

@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.

 

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?

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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:

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