Giving power to the patient

The coalition government came to power with the promise to shift the NHS from an organisation dominated by accountability to Whitehall to one where accountability to patients mattered more. But in Jeremy Hunt's response to the scandals of Mid Staffordshire, it is accountability to the centre that has been given the strongest boost. Hospitals are to be subject to more rigorous inspection and more comprehensive monitoring, a Chief Inspector of Hospitals will identify failing organisations publicly, management will be held responsible, and, when they fail, the consequence may be the end of their career in the NHS.

This shift is pragmatic. Upward accountability – from the front line to managers and from managers to commissioners, regulators and politicians – has always been more powerful than outward accountability to patients and the public. Upward accountability may sometimes distort and corrupt, but there is no doubting its impact. In comparison, outward accountability to patients is feeble.

Despite the theoretical appeal of empowering patients and making providers of health care more accountable to them directly, the practical hurdles have often seemed insurmountable. The biggest of these by far is the attitude of patients. Opposition to patient empowerment often focuses on the pushy patient who tiresomely challenges the doctor’s years of education on the basis of an afternoon on Google. But the bigger issue is the much larger group of patients who simply don’t want to hold their doctors to account or get involved in decisions about their care.

The reason for this is simple. It cuts across our most fundamental desires to put our trust in those who care for us.

The desire to trust doctors, nurses and, by extension, the NHS is so strong that it takes some battering before it collapses. It is there in many of the most tragic stories of failures in care – in the case of Julie Bailey at Mid Staffordshire, James Titcombe in Morecambe Bay or Kane Gorny at St George's.

In each case the patient or carer started from a position of trust in the system. They said what they felt was needed and when reassured, were inclined to maintain their faith in the system over their own disquiet. As James Titcombe puts it when he was told his son Joshua did not need antibiotics: 'I was surprised... but trusted what I was told'. When such faith is found to be misplaced, the result is a combination of fury and an unbearable regret over what might have been.

Far too little is made of the fact that, so often, the patient (or family member) knew things were not right. They correctly identified the problems with their care or that of their loved ones. But they were ignored.

A duty of candour to such patients is, of course, an important step forward. But it is too far after the event to count as a solution.

Looking to the future, we must also give the patient greater authority in the management of their care. We should formally recognise the particular injury of having mismanaged someone's medical treatment in the face of clear warnings and statements from them or their carer. 

But most importantly, we must encourage patients to be vocal and  to contribute in ways that are compatible with their desire to maintain faith in the system. The key to this is encouraging doctors to take an active part. Right now, far too many health professionals regard empowering patients as a waste of time at best and unethical and dangerous to the patient's health at worst.

As for it being a waste of time, done correctly, the reverse should be the result. Giving patients greater access to information about their care and enabling them to carry out tasks, such as managing prescriptions or booking appointments, would be both informing and empowering as well as reducing the burden on the NHS. 

The ethical argument needs greater development and rests on what is in the best medical interests of the patient. Many doctors feel uncomfortable at the idea that giving patients power must imply allowing them to make the wrong decision. More than that, there is the feeling that it is unethical to put a burden of responsibility on patients who are uncomfortable with it. 

Against this, should be weighed the evidence that the quality of health care provided and the outcomes for patients are better if they do take on greater responsibility. Doctors recognise that it is appropriate to tell patients to cut down on smoking or eating, however much the patient might dislike the advice. In the same way, we are now at a point where doctors should consider encouraging patients to take on greater responsibility for their health care – however much the patient might prefer to leave it to the doctor – because it is in the best interests of their own health.

One incentive that might persuade doctors that this is worth pursuing is the potential it offers to reduce the reliance on upward accountability to managers and politicians and replace it with outward accountability to patients.