David Haslam and Nishma Manek: Whose illness is it anyway?

Patient autonomy should include the absolute right not to have autonomy, if that is the patient’s preference today

Whose illness is it anyway? There can be little doubt that the days of the authoritarian patrician doctor telling patients what to do should by now be a relic of the past.


Both of us have been patients or close relatives of patients in recent times. We had previously assumed that when such a time came, as it will for us all, we would hunger for data, leap into the driving seat, and seize the decision-making gavel with both hands. And yet when it happened, to our surprise, both of us simply craved for the doctor to take over, to be absolutely clear about the best course of action, to cure and to save. We now look back with deep gratitude to them for steering the ship. The turbulent sea turned out to be enough to bear without the burden of navigation too.

Tricky, isn’t it? Well, no, it shouldn’t be. While the concept of “shared decision making” has come more and more to the fore in recent years, championed by organisations such as NICE and increasingly emphasised in training and exams, the key is to remember that the word is “shared”, not “devolved”. We have witnessed doctors outlining options to a patient, and then sitting back and effectively saying: “You choose.” Big consultation model tick perhaps. But have we checked to make sure that the patient actually wanted to choose? Patient autonomy should include the absolute right not to have autonomy, if that is the patient’s preference today.

Perhaps one of the key skills of any doctor is knowing how to determine a patient’s preferred consulting style, and also recognising that those preferences may change from day to day, and from illness to illness. For us, there is a clear difference between acute illness and long-term conditions or preventive medicine. With a life-threatening diagnosis we would both err towards hoping our doctor will take over—sharing options by all means, but expressing an evidence-based preference. But for long term conditions or for prevention, the issue is quite different. Tablets or lifestyle change? Pills or talking therapies? These tablets or those tablets? These decisions are often much less urgent, and the need for the patient to be personally engaged is key. Or it may not be. After all, every patient, and every condition, is different. Simple rules of thumb underestimate the complexity of humanity.

We have both been aware of patients who’ve been immensely grateful that when life was in turmoil, we—as their doctors—were a source of calm, able to guide them through the stormiest of times. We have also been aware that with these same patients that calm has been a complete illusion. Like swans, we may have appeared composed on the surface, but underneath we were paddling vigorously through the chaos and uncertainty on their behalf. And we both appreciated this same illusion in our own doctors.

But we may be different to you, or to your next patient. That’s the whole point. Try and find the approach your patient would most appreciate…and realise that preference may vary from day to day, and from illness to illness. After all, if you apply exactly the same approach every time to every patient it would certainly be easy to replace you with an A.I. driven robot. Humanity matters.

Shared decision making is likely to become a permanent fixture in our medical toolbox. In an increasingly connected and information-hungry society, that feels entirely appropriate. But it is worth stopping to ask yourself: what would I want in this situation? Sometimes it is full control. But sometimes it’s not.

Shared decision making must include the decision not to make a decision at all.

David Haslam, Chair of NICE
Nishma Manek, GP registrar, Cambridge

Competing interests: None declared