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In 2012, the UK's National Institute of Health and Care Excellence (NICE)1 stated that clinicians should ensure that: ‘Patients are actively involved in shared decision making and supported by healthcare professionals to make fully informed choices about investigations, treatment and care that reflect what is important to them’. The authors of this paper provide a useful means of giving information to patients, which is part of a process with complex technical and philosophical aspects, and suggest how clinicians should behave in the encounter.
What the authors describe is attractive. If patients could weigh up the information and apply it to their circumstances using a personalised information grid, then we clinicians could sit back and let them get on with it. But, let us explore this example further.
Patients come with baggage, including the understandable fear of scary brain surgery—which is a hurdle they have to overcome—rather than continuing medical treatment, which somehow seems easier, especially in the light of limited personal experience (Aunt Maude was never the same again after that unrelated brain operation). Of course, the decision is ultimately a contextualised and emotional one and this is what NICE meant by making that decision on the basis of what is important to the patient. It requires skill and knowledge to place the information appropriately in an emotional context. The evidence cited in this article clearly supports epilepsy surgery as an effective treatment for drug resistant epilepsy and yet, as the authors state, patients may decline surgery even when they understand that the risks are very low. So, if a clinician strongly believes, on the basis of good evidence, that scary brain surgery carries a substantial benefit for the patient, should he or she be the dispassionate dispenser of information and just accept the patient's choice of treatment, which clearly carries a greater risk? The patient may have very good reasons: a sportsman who cannot accept the risk of a visual field defect after epilepsy surgery, for example, but understands the other issues. The example they have chosen is a complicated one, as in some respects there is no clinical equipoise—epilepsy surgery is the better treatment—but because of the differing types of the risks posed by medical or surgical treatment.
‘The surgery is on the brain but the decision is in the heart.’
I argue that clinicians should be advocates for the treatment that they believe is in the patient’s best interest, while accepting, with good grace, that the patient may choose to decline that treatment. They need to find out why the patient is declining a treatment for which there is a good evidence base. Are there specific fears that can be addressed, which is commonly the case with a scary intervention such as brain surgery? It is important to emphasise to the patient that doing nothing does not mean carrying no risk. Analysing all the data in the way in which the authors present it may be difficult, particularly with patients who have epilepsy and perhaps cognitive problems or learning disability.
Another way of presenting very similar information is to ask what will happen to 200 patients who have epilepsy surgery and 200 patients who choose medical treatment. There may be cognitive problems in both arms and visual field defects following surgery. For the 200 remaining on medication, approximately 10 may eventually become seizure-free and approximately two will die each year from their epilepsy. For the epilepsy surgery group, 100 will become seizure-free and the risks from their epilepsy will disappear, but unfortunately one of those will suffer a major event such as a stroke. Another 50 will see a reduction in seizures and for the last 50, the surgery will make no difference; unfortunately, one of this 100 will also suffer a stroke. Those not becoming seizure-free continue with their risk of death from epilepsy at up to one per 100 per year. There are some cognitive problems here too.
So, some adding up: in terms of epilepsy, there will be a minimum benefit of 90 patients becoming seizure-free in each 200, and a reduction in deaths of one per year, at the price of a one-off risk of stroke of 1%. Patients may have to be helped to imagine how their lives would change if their epilepsy remitted. For some, with jobs and families, perhaps not by that much, but these are the minority. Those who face epilepsy surgery have a high cumulative risk of death if their seizures continue but it is not something at the forefront of their minds because they have lived with epilepsy without dying so far, for an average of about 20 years prior to surgical treatment; a 1% per year risk is not generally given the priority it deserves in patients’ evaluation. The risk of 1 year of uncontrolled epilepsy is the same as the risk of surgery. But it feels worse to do something that results in harm than it does to do nothing and allow nature to cause the harm. Even the doctor's axiom, ‘primum non nocere’, favours inactivity although it may fly in the face of evidence.
The groundwork for these decisions is best done at first discussion, since changing someone's mind is always harder than moving them there in the first place. Clinicians must make time for this discussion at the outset. The written information, whatever its form, should be used as part of it, while understanding its limitations in the decision-making process. The surgery is on the brain but the decision is in the heart.
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.
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