Guideline centred care

Doreen, Ahmed and Henry have recently had their medication changed in response to a new guideline for prescribing Statins, cholesterol-lowering drugs.

None of them came to ask for a change in their medication. In each case the change was recommended by a clinician in response to a new guideline against which our practice will be judged and financially rewarded or penalised.

Here are the NICE guidelines 2015:

The NICE guideline on lipid modification recommends that the decision whether to start statin therapy should be made after an informed discussion between the clinician and the person about the risks and benefits of statin treatment, taking into account additional factors such as potential benefits from lifestyle modifications, informed patient preference, comorbidities, polypharmacy, general frailty and life expectancy.

and

NICE recommends that statin treatment for people with CVD [Cardio–vascular disease] (secondary prevention) should usually start with atorvastatin 80 mg daily.

It is very easy to judge whether or not people with CVD are on Atorvastatin 80mg, but almost impossible to judge whether the decision to start therapy has been made as a result of thoughtful deliberation between the patient and the clinician. Thoughtful deliberation is at the heart of patient-centred care (not doing whatever the patient wants, as is often confusingly assumed).

Increasingly, financial incentives are being used to ‘improve quality’ in healthcare, which usually means that payment depends on the proportion of patients with condition ‘a’, receiving treatment ‘z’.

The assumption is that good quality medicine is about drugs like ‘z’ treating conditions like ‘a’. It says very little about Doreen, Ahmed or Henry.

Doreen is 67 and has CVD, chronic pain, depression, COPD, and recurrent vertigo. She lives alone, is socially anxious and isolated, frequently misses appointments, hates going to hospital, forgets to take her medication less often than she chooses not to take it – which is very often. She smokes about 30 roll-ups a day and has never exercised, and is very thin.

Ahmed is 47, has had two heart attacks, has type 2 diabetes with complications affecting his eyesight and his kidneys, he is overweight and cannot exercise because of chronic gouty arthritis. He has high blood pressure and cares for his wife who has schizophrenia, doesn’t speak any English and is frequently admitted to hospital.

Henry is 91, he has had a series of strokes and moderately severe Dementia – a mix of Alzheimer’s disease and stroke disease. He has metastatic prostate cancer and pain in his back from where the cancer has spread. He cannot speak and needs nursing assistance for all his needs.

Doreen, Ahmed and Henry are not the kinds of patients who are going to object when the doctor they know and trust, or even the expert they have never met before, changes their medication to include Atorvastatin 80mg. Dozens of people like them are my patients. I have no desire to impose an unnecessary burden of treatment upon them. I have every desire to practice with wisdom and compassion, to understand what matters most to them, what they want to get out of their treatment, to know how much is enough and how much is too much, to know which risks are worth taking and which are not. I want to know, in the context of their lives and their complex multiple conditions how much, and in what ways they are likely to benefit from changing their medication to include Atorvastatin 80mg. It is almost impossible to answer these questions without time. Guidelines do not, and cannot possibly take into account the characteristics of every patient. They generalise and we attempt to contextualise. Guidelines are rarely ever put together with or even for, patients. They rarely ever have any shared-decision making support and are not written in a way that is easily accessible to patients. Guidelines recommend that we are patient-centred, but they are not.

I am not sure that shared-decision making tools aren’t heading down a blind alley. They assume that people making decisions are rational and interested in abstractions like statistical tools and flow-charts, when the way my patients usually talk about healthcare is in personal narratives with significant events, characters, aspirations and moral negotiations. Compare Richard Lehman’s description of a shared decision making process or Paul Haidet’s description of a consultation with the NHS shared decision making website.

There is another, perhaps more important issue that this case highlights. GP appointments are a valuable and scarce resource. If the agenda for discussion is to be determined by neither the patient nor the doctor, but by the guideline, then there is less time to discuss other issues that may be of far greater importance and potential benefit. One important question to ask before administering any guideline is, “are there more important issues or interventions to discuss with your patient?”

Thousands of doctors and nurses struggle all day, every day to share difficult decisions with their patients. Making the right decision in the face of the natural complexity of medical practice and our patients’ lives, requires ‘phronesis’ or practical wisdom, informed by guidelines, but not led by them. Thousands more clinicians, caught in a trap with too little time and too much pressure to prescribe will skip the deliberation and simply default to the bit of the guideline that tells them what to prescribe.

When our patients look at the league tables and the accountants look at our books, will they be able to tell us apart?

 

 

10 responses to “Guideline centred care

  1. Informed shared decision making restored my dignity, increased my autonomy, empowered choice and prepared me for change. I was emotionally vulnerable, significantly brain damaged from trauma and in unremitting pain. I will forever be grateful for the surgeon who took the time to share the best available evidence and consider my values. There was no ability to navigate abstractions or statistical tools, I could not see well then enough to read a flowchart.

    My narrative was likely not thoughtfully constructed, it was desperate and missing a coherent timeline because I could not remember my past and was too damaged to see my future. The surgeon took time to find a way to communicate, explain options and not patronize me. This is informed shared decision making and it can be done with words, pictures and tools.

    If you had bothered to seek out and use these methods before you dismissed them you would know this. Decision making between a patient and their healthcare provider is too important to trivialize or write off as you have done.

    Your self perceived knowledge of what shared decision making is and your ignorance of the deep compassion and understanding of the people working in this area takes my breath away. Shared decision making includes context, shared values and the understanding by both parties of the judicious use of evidence in medicine.

    You repeat concerns about too much pressure and too little time and make it look like shared decision making as practiced by those other than yourself is formula driven. Funny in the time of real decision-making and communication time stands still, people get real and there is no talk about too much pressure because the focus is on solving the problem to meet the need.

    Perhaps you can think about this for your next encounter

    ‘The job of the human being [in the digital age] is to become skilled at locating relevant valid data for their needs. In the sphere of medicine, the required skill is to be able to relate the knowledge generated by the study of groups of patients or populations to that lonely and anxious individual who has come to seek help’ (Sir Muir Gray, 2001).

    • It’s unfortunate that i didn’t delve deeper into shared decision making here, though there is a lot more on several recent posts.

    • I think you probably need to read around JT’s blog a little more – he practices more shared decision making, compassionate care and concern for his patients in their whole lives (not just the acute encounter) than any other Dr I have come across. In fact, finding this blog was what gave me, as a person who had suddenly become very sick and dependent on doctors, faith that they might find ways to treat me as a human being – that I could be empowered and get outcomes that mattered to me rather than them.

      JT is absolutely in favour of shared decision making and listening to patients and finding what matters to them – he’s just not in favour of commoditising or tickboxifying it, and he recognises that most of the ‘tools’ for SDM around common conditions ignore the realities of many patients’ lives.

      I’m glad your surgeon did so well with and for you – it is absolutely how all doctors and nurses should practice and I’m confident that JTs patients get a similar level of respect and inclusion – just not by using an algorithm published by a quango far from the consulting room.

  2. Brilliant.
    Of course (did I mistype “curse”?), we are assessed by what can be easily measured, the percentage of eligible patients who are taking atorva 80. There is no easy way we can assess thoughtful deliberation. Quantifying how we respond to guidelines like this seems objective, but it is scientism, not scientific. I hope you can “exception report” patients like these three, excluding them from your denominator, to avoid being financially penalised.

  3. What I need to know is how much people like Doreen and Ahmed are likely to benefit from Atorvastatin 80mg and then I’d need to know how much Doreen and Ahmed want to benefit from Atorvastatin 80mg ie have their future CV risk reduced.
    I don’t think it would be reasonable to assume that Doreen and Ahmed didn’t care about CV risk without discussing it with them, but I don’t think you are suggesting this.
    Do we need tools to help us understand the benefits? Yes, probably.

    • I think we have that already as far as it can reasonably go, but I agree with Trish Greenhalgh and Richard Lehman that multimorbidity is EBM’s nemesis. Risk tools give approximations of risk that are of ever-decreasing value with every additional morbidity, patients’ values and the contexts of their lives add additional considerations and the 2.7% risk reduction loses significance

      • “I want to know, in the context of their lives and their complex multiple conditions how much, and in what ways they are likely to benefit from changing their medication to include Atorvastatin 80mg. It is almost impossible to answer these questions without time. ”
        Yes time is needed. But we shouldn’t give up.
        Personally I feel it is deprived populations that have most to gain from guidelines like this. They have the higher risk and are the most likely to miss out on effective treatments.

      • They are only the most likely to benefit because their risk is so high, but a high risk means that they are likely to benefit from ANY intervention to reduce CVD risk, many of which might be more appropriate, more patient-centered, less risky, more cost effective, etc. than statins

    • We also – more importantly – need to know what the cost of any negative impacts are to Doreen and Ahmed. For me, sometimes life is *just* manageable, and even a tiny glitch can set the downward spiral in motion. In those times I would choose not to make changes unless I was in immediate danger. I might (as I have done with Cabergoline) wait the best part of a year for a window where I know I can accommodate the side effects without too much drama / cost to me and my family.

      In Ahmed’s case, as a carer he might be so close to not coping that even ‘trivial’ side-effects (headaches or change in blood sugar responses etc) could tip the balance. If that’s the case, then short of preventing his imminent death (which statins don’t afaik?), the risk-numbers aren’t relevant, in my view.

      Of course, as you say, checking that with the patient is key (and I’m sure JT would) – but I think for most of us who are plate-spinning, not being in crisis *right now* is an outcome worth assigning great value to. We might need to do quite a lot of other things first, to get further from the edge-of-crisis, before it’s even worth thinking about talking about statins? Whether that kind of help exists is of course a whole different conversation, and I think sometimes medication can at least feel like *doing something* – for the patient too – but I’ve come to appreciate just how important it is to do nothing (except for carrying on).

      • OK- bit of confusion here. I’ve been assuming that these patients already been taking a statin for secondary prevention and that we are just talking about increasing the dose. I tell all patients in this situation that if they don’t get on with the higher dose for whatever reason we can just go back down to the dose they have been on.

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