Informed choice is a key ingredient of modern day medical ethics. Many patients now get a variety of information from the internet, but much of the information available can be at best confusing. We might think that leaflets used by the NHS would at least be consistent and clear. Yet this appears not to be the case.
The NHS’s patient information leaflets are “inaccurate, inconsistent, and confusing – and effort is duplicated” argues GP Margaret McCartney on bmj.com.
In a feature published today, Dr McCartney says the NHS is “awash” with patient information and with many trusts commissioning leaflets from external companies and others writing their own, it is difficult to know how efficient and effective these leaflets are.
In a personal view, Dr McCartney says the NHS is “awash” with patient information and with many trusts commissioning leaflets from external companies and others writing their own, it is difficult to know how efficient and effective these leaflets are.
Previous studies have shown that leaflets are providing patients with inconsistent guidance and others are giving conflicting advice. As such, patients are being given very different information depending on where they live.
A study carried out on one set of leaflets for the removal of kidney stones found they did not consistently mention common complications and had a wide variation of information on drugs and pain-killers. Furthermore, complications were often inadequately explained.
Sir Muir Gray, co-chair of the executive council of the Information Standard (a scheme for organisations producing evidence based healthcare information for the public), said “It’s a stupid system, a waste of money, and, without rigorous standards […] the information is biased and misleading”.
McCartney says that the problem of varying leaflets is not new: a BMJ investigation in 1998 found inaccuracies and outdated information in leaflets given out by general practitioners.
One researcher at the University of Oxford says the problem is that “the NHS still fails to take this seriously”, adding that, at the moment, in most NHS trusts there is no one who has responsibility. This means that leaflets can end up amateurish “with the evidence and uncertainties not expressed clearly”.
One spokesman told the BMJ that NHS England is, however, launching a “major project” in September which they hope will “standardise all information”.
McCartney concludes that the challenge now is “to adopt high standards […] updating information regularly and making it easily accessible”. She adds that “this is one area of the NHS where efficiency savings look ripe for the picking”.
From an ethical perspective, it is important to understand that patient leaflets are no substitute for a consultation between doctor and patient. Patient needs in relation to informed consent can be specific and often depends on lifestyle, family or relationships. How a patient ways up options will depend on these personal circumstances and needs. A leaflet is very unlikely to be able to address these specific needs. Doctors should not simply 'inform'; they should also listen and provide information that helps their patient to make a decision that is relative to their needs and is right for them.
Patients may also seek reassurance that their choice is right. A leaflet is unlikely to help with this. Informed consent is a dialogue in which there is two way information flow between doctor and patient. Nevertheless, leaflets should not be confusing. The truth is that modern medicine for all its advances has a great deal of uncertainty. How we deal with that is tricky. Patients often want answers. Living with uncertainty is difficult for both doctor and patient.