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Guideline-Centered Care

flying cadeuciiDoreen, 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-centered 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?

Tomlinson is a physician in the UK. He blogs at A Better NHS , where this post first appeared.

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  1. This is why I detest the term ‘evidence based medicine’ and prefer to talk in terms of patient-driven, evidence-informed care. The risk is that, in our well-intentioned attempt to avoid clinician paternalism, we have begun to worship the algorithmic overlords instead.

    We should we spending time learning with our patients about what their goals are and what is available to help them reach their goals. Instead, pressured by institutions in their drive for faux-quality, we are spending our time pursuing institution (metric) centered care.