Podcast 203: What’s wrong with guidelines

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We talk with Dr. Margaret McCartney of Glasgow about her essay in The BMJ. She and her three co-authors titled it “Making Evidence-Based Medicine Work for Individual Patients.”

Note: We’re going to start including transcripts, and may even add transcripts to earlier podcasts. Let me know your reactions at jelia@nejm.org.

BMJ essay

Transcript of Podcast 203
Guest: Dr. Margaret McCartney
June 2016

JOE ELIA:  You’re listening to Clinical Conversations. I’m Joe Elia.
Our guest this time is Dr. Margaret McCartney a Glasgow-based general practitioner and author. She, along with three others, wrote an essay for the BMJ in mid-May entitled “Making Evidence-Based Medicine Work for Individual Patients.”

[http://www.bmj.com/content/353/bmj.i2452]

The essay points out a few things about the guidelines that come from the evidence-based approach. Among the observations is that guidelines too often discount the patient’s role in decision-making.

There are other observations, and we’re fortunate to have Dr. McCartney here to talk about them. Welcome to Clinical Conversations, Dr. McCartney.

MARGARET MCCARTNEY:  Thank you for having me.

JOE ELIA:  There are lots of guidelines out there, aren’t there?

MARGARET MCCARTNEY:  Yes, I don’t even think I know how many guidelines there are any more. Certainly there are heaps of them, and every day I get another alert saying there’s a new guideline I should be aware of.

JOE ELIA:  And so you try to make your yourself aware of them but you can’t — you can’t be aware or compliant with everything because they often are at cross-purposes, aren’t they?

MARGARET MCCARTNEY:  Well they are, and sometimes guidelines themselves are in conflict with each other, and policymaking and guidelines is another area of conflict quite often.

But one of the really big problems I have as a general practitioner working under pressure – and making lots of decisions with my patients within the confines of a 10-minute consultation — very often is how to get a really good quality decision making in there.

And part of the problem is the guidelines are so long and unwieldy that the information I really want – the really basic statistical information – is often buried really deep inside. So in order for me to try and make a rational decision with my patient – the stuff that is really useful may be buried deep in there and may not even exist in the guideline at all.

And so really what we’re questioning [in the BMJ essay] is who the guidelines are being written for just now. Are they being written with the primary purpose in mind of helping people make good decisions based on their values about what they would like to do with their health? And I think just now we’ve got an awful lot information on guidelines, but not necessarily the really good information that would help me make better decisions with patients.

JOE ELIA:  You point out as a paradigm the Alberta cardiovascular risk reduction guideline, which runs two pages in length – and I’m sure that you would like to see more two-page guidelines.

MARGARET MCCARTNEY:  Yes, I think summaries can be really useful.

One of the classic examples is bowel-cancer screening. And so we seem to do an awful lot of fecal occult-blood testing but not very much in terms of telling people “OK, here are the potential benefits, here are the potential harms” – written in terms of, say, absolute risk in a way that we can all understand and give each other the heads-up on it. The same with statins; the same with hypertension drugs; the same with drugs to prevent osteoporosic factors.

There’s lots and lots of preventative stuff we do, and I’m really concerned that we’re not giving high-quality information to people. And instead of the doctor’s role being enabling a conversation and discussing choices, we’re kind of being corralled into being told what the correct decision is. But until we’ve asked the patient, how can we know what the correct decision is?

I think we should know from NICE [the U.K.’s National Institute for Health and Care Excellence] what the cost-effective things are to do, but when it comes down to putting someone on a medication for maybe 15, 20, 50 years – who knows? – we should be making really good decisions about that.

JOE ELIA:  You mention taking a “bifocal approach” to the guidelines in your essay. And so I think you’ve explained that already — but explain the metaphor again?

MARGARET MCCARTNEY:  We’re trying to do two things at once. We want really good guidelines that give us a sense of what’s happening in our population – what is good for the population, what do we think the risks and benefits are for a population – but what we’re always addressing in the consulting room are those facts for an individual person. So what we really need to know is, What are the values that that person holds? What does that person want to avoid or what risks do they want to take?

So for some people, they will do anything other than taking a tablet. For some people, they want to take every tablet, no matter how slim the chances are they will get a benefit from it. For some people, they want to use exercise to try and mitigate as many risks as possible; for other people, that’s not going to be possible for lots of very good reasons.

So it’s about trying to really shape decisions which are based on evidence which may not even be applicable to that patient. So we need to know, Is this patient typical of the   folk that were in the trials that generated these guidelines? So we really need a sense of where our person fits in with what’s already known and what should be important for that decision for that individual.

And in many ways it’s not rocket science, it’s actually quite straightforward. But then we’ve got ourselves into this mechanistic state now where guidelines have to be all-seeing — all being absolutely perfect, applicable to everyone from the super specialist to the general practitioner. Whereas providers have quite different needs a lot of the time. Until we know what our patients want we really don’t know what our patients’ needs are.

JOE ELIA:  You say the quality of the evidence underlying the guidelines isn’t good. Much of it is based I think you said almost 2/3 of the evidence in one cardiovascular guideline was of dubious quality and not because research was bad but because it wasn’t based on strict evidence or randomized controlled trials.

MARGARET MCCARTNEY:  We’ve got loads and loads of guidelines designed to be used by general practitioners, but the bottom line is that the data which these guidelines are based on are very nonreflective of the patients that we have in the community, who very often have multiple morbidity, who may be old, may be frail. You know it staggers me that we are applying the same kind of guidelines to someone who may be 85 and on 12 different medications with a 42-year-old who is otherwise fit and well. And the risks and benefits in these situations are quite different.

I think it’s really wrong to treat everyone as a human machine that has to be put into a guideline factory and then told what they should be on and what they should take for the rest of their lives. We’re missing humanity in that situation.

JOE ELIA:  I’ve been reading your book that came out about two and half years ago – “The Patient Paradox,” and the subtitle is “Why sexed-up medicine is bad for your health.” And so I’m about 10% of the way through it and I was reading the section on statins, and on your opinion about giving statins the people who have no other indications other than “Well this might lower your bad cholesterol.”

So it’s true that that there is lots of “sexed-up” medicine out there but it doesn’t necessarily translate to …

MARGARET MCCARTNEY:  I agree. We have this really ridiculous situation and just now in the UK where we’re pouring so much money into new pharmaceuticals, new technology. It’s almost magical thinking that somehow we’re going to stop death, stop people dying, and make everyone perfectly well, and make everyone’s numbers (everyone’s obsessed with numbers and measuring) perfect. And that will somehow mean that we’re all virtuous citizens who will kind of live forever. And it’s just completely crazy.

We know that health inequality is a major problem. You know, if you’re poor in Glasgow you will die 20 years younger than if you live in a rich area. Therein sits the problem. And any amount of statins won’t help out.

We know there is really good evidence that says that if you are already healthy you’re most likely to comply with all preventatives in health interventions, be that screening or statins or whatever else. So if you aim all your public-health strategy on preventative medicine that requires that kind of uptake — like taking a statin, taking a blood pressure pill and taking a bowel cancer screening — the problem is that you’re directly giving more resources to the people who are already going to live the longest and you’re leaving the poorest people yet again behind. And that’s the major problem.

So the theme of “The Patient Paradox” is that we keep doing things to people who are well and have got a small chance of benefit. While the people who really should be becoming patients — who should be getting particularly mental health treatments, which is an ongoing scandal of delays and of obfuscation – they are the people who would benefit most from intervention from health care services. And yet because you almost have to advocate for yourself to get it you end up in the back of the queue again and again, and that’s the paradox I’m talking about. We’re aiming our resources at the wrong people.

This was famously described as the “inverse care law” by Julian Tudor Hart [in the Lancet in 1971], and “The Patient Paradox” is really me saying well, I think it’s really worse than that now. Because not only are we giving less care to the people who need it most, we’re actually giving ineffective and harmful care to people who need it least.

JOE ELIA:  You’ve got a new book coming out in November on the U.K.’s National Health Service. Can you give us a little preview?

MARGARET MCCARTNEY:  So it’s called “The State of Medicine: Keeping the Promise of the NHS.” My conflict-of-interest that I am absolutely committed to working within NHS. I think it is the best health service in the world, but it has been systemically underfunded and run on short-term political populist policies that were based on no evidence whatsoever, [the policies] have wasted resources, have put more resources to people again that don’t need it while ignoring the people that do, created more health inequalities, and it’s just become this political football.

I want to see a new era where we run our evidence-based NHS with compassion, with professionalism, with patients right in the helm working out where we best go. Having a system that is based on needs rather than wants and really reprofessionalizing where we work. I think the NHS is the best thing the world. I have many friends in America who tell me terrible stories of what happens with inequalities, and it’s a real big problem.  People who are right at the bottom of almost the pecking order seem to get less and less as we move towards a more consumerist model, which is bad for everyone.

JOE ELIA:  If you could ask your colleagues here in the US or there in the UK to do one thing differently next week in their clinics, what would it be?

MARGARET MCCARTNEY:  Oh they could teach me! I’m very average – below average. I don’t think I should be telling anyone else what to do.

There’s one thing, though. I think it should be to have coffee together. We work in a system now where you’re tethered to a computer all the time. My worst days at work —  the days when I feel most stressed and distressed — are the days where I don’t manage to have 10 minutes with my colleagues to ask for advice, to talk about what I’m doing, to get their feedback, to talk about what we did for the weekend – just that kind of communality with other people.

And it’s so easy now when we’re tethered to a desk, tethered to a computer, to be really isolated and actually quite lonely as a doctor. And you know, I need other people around me to support me and guide me and help me. That’s only my advice. I’m sure people would like to not take it if they want to! I think the problem has become that we’re atomized almost as doctors now. We’re working to protocols, looking at computers instead of looking at our patients. And our biggest resources are the staff that work at the NHS and the people that use it.

JOE ELIA:  Well, Dr. Margaret McCartney, thank you so much for spending time with us today.

That was the 203rd Clinical Conversation. The others are available, free, at http://podcasts.jwatch.org. My executive producer is Kristin Kelley, and we come to you through the NEJM Group. I’m Joe Elia; thank you for listening.

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