Who’s the expert?

Following on from twitter discussion.

I am a GP; I qualified in 1994. I spend two or three hours  a week reading and learning new things about evidence and medical practice. I encounter at least one problem daily that I think I should go and find out more about. I have passed lots of exams, have letters after my name, am often asked to give talks about medical things, I teach students, and I would still never think of calling myself an ‘expert’.

Part of this is the nature of general practice – some people say ‘expert generalist’; I just say GP.  ‘Expert’ to me implies that I am better than others; my dictionary says ‘having a thorough knowledge’. Of medicine, I don’t know if that is realistic. There is danger in presuming that one’s knowledge is complete; and arrogant danger in assuming that I know everything.  I try my best. Sometimes I get things wrong; we all do; my hope is that I own up, make best amends, and use that experience usefully. Because I know that I don’t know everything, I know that I need to check back, think, talk to colleagues. I am a working GP, same as other GPs, trying to do my best with what’s available.

I am on my patients’ side. That is to say; my automatic default is that I am advocating for the person who is my patient. This will mean that I do my best to get a helpful diagnosis, sometimes to avoid diagnosis, to share uncertainty, to discuss the limits of medicine or the dilemmas we face. This will also mean that I will sometimes decline to do things which are harmful or dishonest; such as extended prescriptions for dangerous and unneeded medication, or sign sick lines which I can’t justify.

Often, this is not just a 10 minute appointment. More often, it’s a relationship over time. So a decision might, on reflection, change; more information might be later gathered; further issues might appear to be explored or ignored. I am on my patients’ side. Whose else could I be on?

The rise of the ‘expert’ patient changes this.

For decades, patients have organised themselves into groups where information can be shared, support and knowledge offered, and where they have been able to request health professionals address their concerns or wants of discussion. I am aware of many, usually small, charities and patient groups who have fulfilled these needs locally and extremely well. The agenda has been created and designed by patients, they have been in control, and they have been able to talk and directly influence healthcare staff. Not all patients have wanted to be involved centrally or peripherally with other people who have similar illnesses. Some people have wanted to be told by their doctors what they should do; some people want to examine each decision possible in minute detail.

That’s all fine. It’s more than fine – I should be adaptable enough to maintain basic standards of informed consent while ensuring that people get the right amount of information. It’s my job, it’s what I love, it’s what I still feel I have a vocation to do.

But when I read the text of the ‘expert patient‘ programme, I am filled with dismay. It offers people the chance to ‘take control of your health’ in a six week course. I am not sure that anyone can really offer an intervention promising control over our health. This course, rather than being run by people with the same condition (so unlike the support from a charity or group for say MS or diabetes) is run by people with any of many long term conditions, and is run to a Department of Health protocol. There is no teaching of things that might be useful, for example, how to interpret media claims about ‘breakthroughs’, and much of the teaching – for example, relaxation skills – are often being run already for free by local services. The inference from the DoH is of health consumerism, where people as patients should be able to push harder for and consumerism only really works if there is to be shopping around. So we have one aim

greater flexibility and choice in accessing services, for example through the nurse-led telephone
service (NHS Direct), Walk-in Centres and the NHS website;

Hilda Bastian puts it very well

“Who will be left sitting and waiting, with little time left for them, while others are getting all their questions answered, and getting double medical advice for each decision? Whether you look at it from the point of view of the have-nots, the timid, or an overburdened practitioner, my fear is that some of this might not be fair.”

In other words; the least articulate, the least demanding, and possibly the most vulnerable will end up worse off.

I am worried, deeply worried, that the consumerism masquerading as ‘expertise’ is really only there to make patients into customers. Customers can choose and shop around and demand; they can also be fired by businesspeople who see them as drains on time and resources. (We have seen this already; some GPs, in the post-NHS Act have ‘let go’ patients in nursing homes because of high workload to financial reward). A professional relationship is something different; a duty of care; and primarily, of course, of making the care of my patient my first concern – and advocating for that person to the best of my ability.

If we really wanted to get closer to that – and why is can often seem to some people (some of whom have replied on twitter) that doctors are not on the patients side – it is necessary to look at the influences on the consultation. Doctors are seen by the government to offer quality based on ticking lots of boxes; smears, blood pressures, advice to stop smoking. If you are pretty well and don’t have a lot of health care needs, it might be easy to fit these in. (Whether it is right is another matter.) But if you are ill, if you have issues you want to discuss, if you need to be listened to: these needs are competing with the need of the practice to demonstrate ‘quality’ ticking of boxes. The patient’s agenda looses out. It’s almost criminal. It has threatened professionalism. I think it has broached it. It distresses me.

More than ever, urgently, as the NHS Bill comes home to roost, we need patients and doctors on the same side. We need to make sure that our shared priorities – not the GP contracts’ – are the ones we listen to. We do not need to be made enemies, playing pointless games of who has the greater ability to be ‘expert’. Patients need to help doctors regain their professionalism in the face of government pressures – the contract, choose and book, the electronic patient record – which detract from what we it is that the patient really wants to talk about.

More than ever, we need doctors and patients to be on the same side.

 

12 Responses to “Who’s the expert?”

  1. Guy Chapman July 10, 2012 at 11:06 pm #

    I entirely agree. The health agenda right now is dominated by pandering to the middle classes, especially the worried well. For example, the government apparently sees no problem pandering to the primarily middle class demand for bogus complementary therapies like homeopathy while systematically starving geriatric medicine of funds (by an odd coincidence middle class people are rather less likely to end up on a geriatric ward and more likely to be able to fund private nursing home care through sale of assets).

    I am middle class. The government is telling me I should be more demanding – more screening, more “MoT checks”. Twaddle. Doctors are for sick people, well people should go and climb a mountain or something. It’s just as good for your “wellness” and doesn’t cost the taxpayer a penny.

  2. Elizabeth July 10, 2012 at 11:53 pm #

    I know what you’re saying and was surprised how the GP consult is controlled by the NHS in the UK, so precious consult time can be wasted ticking boxes. (I just read your book) Thankfully, we don’t have that level of control in Australia, but our GPs do receive financial incentives for some things and I know the UK call and recall system for cervical screening is being considered…it gives the program greater control, which, IMO, means it’s easier to strong arm women into testing.
    I’m hard on our doctors because I feel such outrage there is no respect for informed consent for women in cancer screening and that we’re still being pressured to have over-screening with the pap test when we now know most women are not even at risk from cervical cancer, they’re HPV negative, yet we’re not offered HPV primary testing or HPV self-testing.
    It makes no sense for women, most of whom are not even at risk, to spend a lifetime having pap tests, biopsies etc – we’re spending millions to test and treat women who are not even at risk.
    I understand many of our GPs feel they are caught between a rock and a hard place and while the outdated program is in place, they have to recommend it…but, there has been decades for doctors to voice their concerns, refuse target payments and ask the AMA to release a statement warning women and pressuring the Govt for smarter testing.
    That has never happened…our doctors have co-operated with the program.
    So, I know many women who have lost trust and respect for our doctors and some women avoid doctors altogether. I think it’s sad that these programs have been allowed to corrupt the doctor-patient relationship.
    We have many doctors who speak down to women and chastise us like little children for choosing not to screen….it makes me feel there are major problems with the way women are viewed by the profession.
    This is one example that appeared in a newspaper here recently…our doctors are now impatient that more women are refusing to take part in our excessive and harmful pap testing program.
    I’m not an expert patient, but I have spent a lot of time researching cancer screening….it has served me well and helped protect me from these programs. I have always declined pap testing and more recently, declined mammograms.
    http://www.smh.com.au/lifestyle/life/gynecology-phobia-a-dangerous-trend-20120706-21m8h.html

  3. Anne Cooper July 11, 2012 at 12:11 am #

    I enjoyed your blog.
    The thing is, sometimes its all a bit of a game…. I suspect you are a great GP. I suspect if you were my GP you would treat me, as a patient with T1IDDM with regard and respect for my 30+ years as a person coping (yep coping) with diabetes.
    I wonder if the game is around the use of the word ‘expert’ and ‘expert patient’ and is about the culture of the health system that determines that patients of course should do what their doctor says? That this is a game thats a small attempt to shift the cultural balance in a helpful way?
    I do know a lot about my diabetes. But I completely respect I’m not a GP or indeed a diabetologist. I respect your training and ongoing effort to stay up to date and well informed. But I wonder what makes me still feel guilty when my HbA1C takes a nose dive? Even if I know I’ve tried really hard? I honestly feel I’ve let my doctor down – ‘I’ don’t even come into the equation. Why is that?
    I think relationships, power and control are interesting here. I don’t just mean that docs (an indeed nurses) often tell patients what to do (and v often what no to do! ) but also what happens to people who have to cope with health problems for long periods of time. We cope with issues of loss of power and control I think. Perhaps this might be some sort of attempt to change some of that but in doing so maybe blaming the wrong people :0)
    I think all this is interesting. We need to understand more about how we can help people cope. There is no alternative. Perhaps doing battle, or playing a game over words doesn’t help! I know I’m perhaps guilty here too!!
    Thanks for making me think.
    Anne

  4. Anne Cooper July 11, 2012 at 12:23 am #

    Ps I have not commented on your link of expert to consumerism! Mainly because I’m so fascinated by the debate around the label of expertise 😉

  5. Penelope Friday July 11, 2012 at 6:51 pm #

    I understand what you’re saying, but the truth is that many GPs really AREN’T as knowledgeable as their patients with chronic illnesses. So should I, for example, as someone with ME, NOT challenge a doctor who tells me that there is “no such thing” because I’m wasting time for other people? I like to think that I am actually helping other patients who are too intimidated or inarticulate to say such things.

    However, I profoundly agree with most of what you are saying. A patient shouldn’t feel like they are ‘fighting’ a doctor to get treatment, because that doesn’t help either the patient OR the doctor. And oh, your comment here “sometimes to avoid diagnosis, to share uncertainty” is very important. It feels, from a patient’s point of view, that often doctors offer “you’re over-weight” “you smoke” “you drink” “you’re depressed” as answers because they actually don’t know WHY you’re not well. Maybe it looks good on a checklist, but as a patient… not so much.

  6. Margaret McCartney
    margaretmccartney July 11, 2012 at 10:29 pm #

    thanks for the comments
    I would want a patient to tell me if they knew something I didn’t. Absolutely. It’s a two way street. To me this is collaboration, though. And while there are many times that the person with the illness is also completely correct, there are other times when a different perspective, contextualising, setting into place with evidence, and recalling history can all be very useful. If I am not up to speed with a condition or it’s management, it’s my learning that needs to be done. But no doctor can ever know all about a patients’ priorities or experience, unless that discussion is had. In the end, no learning is finite, and no body of knowledge can be foolproof. Much of the time, general practice is it’s about living with things as well as possible;and even when tickboxes aren’t being filled up, much is still being – less visibly to politicians – done.

    Guy is absolutely on the money.

  7. Margaret McCartney
    margaretmccartney July 11, 2012 at 10:32 pm #

    PS words I hate in relation to healthcare

    Coping /acopia (essentially; a patient who is not causing/causing me work)
    Battling illness (there is no fight, there is no loser)
    Consumer (if I wanted to create a business model, I’d screen well people with non evidence based tests and hand the ‘abnormal’ results back to the NHS. Oh wait – there’s dozens of companies already doing that!)

  8. Elizabeth July 12, 2012 at 1:26 am #

    Dr McCartney, on the issue of trust and ethics…one thing that bothers me with screening…Australia has an excessive pap testing program that includes teenagers and we have doctors currently writing articles scolding teenagers and young women for failing to screen…yet these same doctors must know the evidence and that these women WILL be excluded from screening in a year or so. What is the motivation here? I just don’t get it…
    I know some GPs argue that even if a program is excessive and out of date, they must keep recommending it, otherwise they risk a legal action if a rare case of cancer occurs…
    There must be a point when doctors are ethically obliged to walk away from a program. Why couldn’t doctors simply refuse to test those under 25 and
    provide women with their reasons?

  9. Donald July 12, 2012 at 4:18 pm #

    Having been a protagonist in the said Twitter discussion, I want to reply to Margaret’s excellent blog. (Apols for the lateness but I was v busy y/day). I agree with the conclusion and with most of the points. But there are some points of clarification that I would like to make, following on from what I said on Twitter that relates to what Margaret said in this blog.
    Margaret mentioned wariness re the ‘expert patient’ programme, which I share. However a different example, the Medicines Partnership program, I think offers a better example. The World Health Organisation (WHO) has distinguished between ‘adherence’ to medication or any other regimen, which is a behaviour, and ‘compliance’, a passive act which does not require the medicine user’s agreement. In the UK, the Medicines Partnership program stated a need for concordant relations between healthcare professionals and patients (Medicines Partnership), whereby decision making is shared between the two parties. This reflects an active role for the patient seeking to process knowledge to aid decision making, rather than passively complying. Pound et al have proposed that this process requires patients and doctors to be equal partners in treatment decisions. The process of concordance is (in part) supported by the provision of tailored, clear, accurate, accessible, and sufficiently detailed information (Medicines Partnership). Matters are complicated by disputes surrounding concordance. Some have cast doubt on the value of the term, arguing it is synonymous with adherence or compliance (Aronson), and therefore presents no difference or benefit to the patient. The response to this has been that concordance refers to a process of negotiation between doctor and patient, while compliance/adherence refers to the patient’s medicine-taking behaviour (Bell et al., 2007). However, in a convincing argument, (Aronson) has highlighted how, in the treatment of a critically ill patient, there is no scope or need for negotiation. I mention this because it is important to understand the different concepts which underpin this debate. This is not merely a semantic debate about sociological labels; we are talking about different fundamental ideas of patient care that can have dramatically different consequences.
    I agree with Margaret that not all patients want to be involved centrally or peripherally with other people who have similar illnesses; and that while a lot of people (usually older people) do want to be told by their doctors what they should do; others (often younger and yes middle class) want to examine each possibility in detail. I and others would consider this an accepted component of concordant relations. I don’t see an aim of Partnerships in Medicines being to campaign for consumerism in health care. I have always seen it as being one of empowering. (I assume that some of you may be cynical about that word!)
    The main driver for the Twitter debate was probably the use of the word “Expert”. I used it once (to quote Basil in “The Germans” episode), when I said that I agree it’s best for doctors and patients to work together. I said “Each side brings their own expertise – I don’t see that as competition”. I still do not. I think we can all learn from our own experiences in life, and develop a level of expertise vis-à-vis that experience, which another person cannot have. For example, due to a strabismus I have diplopia. I am no expert in opthamology, although living with this condition; I do know some of the technical language. But there are aspects I know about living with this condition which I do not think an opthamologist could truly appreciate. Here I think comes a sort of “expertise”, albeit for a very VERY limited aspect of a wide condition.
    I too genuinely believe that Doctors are on the side of the patient. I believe that this may be strengthened if the patient is an expert re the experience of his/her condition. I believe this is all the more crucial when the patient does not seek to be an expert of their condition.

  10. Patricia July 31, 2012 at 9:47 am #

    I believe that you are a very good GP, Dr McCartney, you want the best for your “patients” and work with them on a collaborative basis. You also try to keep up with the medical literature. I agree with you that a 6 week course is not going to turn “patients” into experts about their own health, and that such a course will not empower the “least articulate” and “most vulnerable”. I have read your book.

    But I also agree with the post by Anne Cooper. Unfortunately, many GPs don’t have the collaborative approach that you have, and there is a power imbalance between some GPs and their “patients”. The problems with GP care in some instances cannot all be ascribed to the pressures of govt agendas.

    The concept of the GP was originally developed so that an individual could have a doctor who knew them over their lifetime as a person, not just as someone who presents out of the blue with a medical problem. Care could be approached holistically. That is what you are doing with those in your care, certainly. However, many GPs are not working on this basis these days, and not just because of tick boxes being a burden on their time.

    My concern is mental health, but not of the severe and complicated kind. In Australia, GPs are the ones who over prescribe antidepressant medications (13 million subsidised scripts in 2009-2010, in a country of 23 million people at the time, 85.3% prescribed by GPs. Of course many of these are repeats, but this is still a figure of millions). They also overprescribe benzodiazepines in their millions, (approx 10 mill pa) despite these drugs being highly addictive. Most of these scripts are written for the elderly.

    I note that you have mentioned in this blog the long waiting list in your city (8 weeks) for psychological therapies . This must mean it leaves you with little choice for “treatments” and it must mean you opt for medications in order to help your mentally troubled “patients”, in some cases? But I would gather from your writings that you are very unlikely to be a GP who overprescribes psychiatric medications.

    Fortunately, I am very well educated so I were I depressed, anxious or suffering from panic attacks, I would not attend a GP and leave with a scipt for an antidepressant or a benzodiazepine. Others are not so fortunate because they may not be well informed or educated and they believe their GP is an expert on mental health, even though most likely the GP wants to get them out of the surgery with a script. This is despite the fact that such a GP has the best of intentions and wants to help the “patient”. He/She is simply caught up in the modern medical paradigm. In fact, a patient may even ask for a script themselves and, yea verily, it will be given unto them. This is what is happening in Australia and the UK and other western countries.

    Most of the GPs in my local practice are excellent GPs,and I have known them for some years. However, now I look at all of them differently, and I cannot view them as expert professionals who are on the side of their “patients” when it comes to some matters.

    GPs need to lobby the government for the changes they want for the benefit of “patients”, as most “patients” are not empowered. Surely, GPs can band together to try and get change to the tickbox mentality, if indeed they are GPs like yourself who are truly barracking (as we say down under) for their “patients”? Why aren’t GPs up in arms about the fact that they are forced to overprescribe some psychiatric medications? Why don’t they call for new models of mental health care centres in which GPs and psychologists have adjacent rooms, for example?

    I can only conclude that GPs like yourself, who take a truly etchical, caring and collaborative approach to their work, are in the minority of GPs.

  11. Margaret McCartney
    margaretmccartney August 4, 2012 at 10:24 pm #

    sorry for delay in replying Patricia

    I think the real changes that are needed will be achieved by patients becoming (I hope) properly informed and then angry at the way in which their needs are pressed under by the contract GPs are held to work to. I don’t think I am much different from anyone else, I think I’m a fairly average GP, and I think many GPs like me are fed up with the way we work but feel powerless to do much about it. If that is to change into a system that respects people as able citizens who can direct the nature of the consultation, and doctors as professionals who want to advocate for their patient, we need people to decide that is what they want and to enable and empower doctors to do that for and with them.
    When I meet young doctors or medical students, I am struck by how much vocation they have, how much they want to do well for their patients, and their wish to get things right. And then the targets, tick boxes and emphasis on the wrong things is capable of beating out the enthusiasm and love for the job of many.

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