Q The information-rich environment of the internet means that our patients know the evidence on which our guidelines are based. Is there not an inevitable stage at which the rationing decisions being made by PCGs and GPs will conflict with evidence-based good practice to a degree that will cause concern to the medical defence organisations?
A Despite talk of the information riches on the internet, it often seems that 'surfers' are in the position of thirsty people lost at sea. There is plenty of water but it isn't drinkable.
If it is hard for professionals to locate relevant information in a usable form, it is even harder for patients. A patient is more likely to come to the surgery brandishing a copy of a guideline than to have accessed and considered the evidence, which makes the problem more difficult to handle.
This problem is likely to worsen in the medium term as material is uploaded onto the internet in the mad dash to join the global network. It will be some time before there are reliable and robust 'kite-marking' systems to help you and the patient get a measure of the worth of the information.
So, what do you do when faced with a patient who has printed out information and is asking you to follow it?
- First, welcome the patient's interest and initiative.
- Second, look at the guideline yourself. Don't give the patient the impression that you are looking at it in order to find fault with it. Read it carefully so that you understand who has published or sponsored the guideline, what is being recommended, and on what basis the recommendations are made. If you need time to digest the information, suggest that the patient comes back a few days later.
- Third, don't make assumptions about what the patient wants: establish clearly what the patient is asking for. The patient may want reassurance or explanation or may have been persuaded to come by a friend or relative who has given the patient the guideline and simply wants to say that they have shown it to you.
Assuming that the patient wants something that has not been offered, ask yourself whether you can accede to the request: what is recommended may be appropriate and available. If this is not the case, then you will need to deal with each situation on its merits.
Reasons why recommendations in a guideline obtained over the internet may vary from current local practice are summarised below:
- The guideline may not be based on evidence, or its provenance may not be clear (see, for example, McLellan1). If as one would expect the local guideline were evidence based, you may advise your patient in this case that the local guideline is a more secure basis for practice than the ones(s) that he/she has downloaded.
- The guideline may recommend an option that is as good as, but no better than, the option used locally. Here you may explain to the patient that following the guideline offers no advantage for the patient and that it is sensible to standardise tests or treatment locally to minimise opportunities for error and keep overheads low.
- The guideline may refer to pharmaceuticals that are not licensed in the UK but are licensed in other countries (or vice versa).
- There may be different regulations and laws in the country of origin of the guideline, such as those permitting or preventing a professional group from engaging in an activity.
- There may be different professionalostandards, such as those permitting acceptance of direct referrals in the country of origin of the guideline.
- Finally, there may be differences between healthcare systems, in which different payors and a different total amount of resources available may influence 'real-life' recommendations. This is the most difficult situation.
The English courts recognise that the NHS cannot be expected to provide the very best of everything to everyone within limited resources. Although doctors have an ethical obligation to do the best for the patient, and GPs' terms and conditions of service refer to giving necessary treatment, this is always subject to the use of judgment in the light of the situation in which the doctor and patient find themselves.
If you decide not to follow the guideline the patient has brought you, you should explain the reasons to the patient and record these in the notes. If you are really worried that you may be denying the patient a treatment or investigation recommended by a guideline, it would be wise to refer him/her for a second opinion.
You should only treat your patient according to the internet guideline if you feel satisfied that the recommendations are sound and appropriate to the particular case. The patient may misinterpret a guideline, and it may not apply to his/her problem. It is not helpful to acquiesce simply to keep the peace.
Of course, most of us want everything done for us and our families that could be done, but as taxpayers and householders we are generally quite realistic. A little time spent on explanation will probably pay dividends.
If you and the patient cannot agree what to do, you should always be prepared to give your patient the option of a second opinion.
- 1. McLellan F. 'Like hunger, like thirst': patients, journals, and the internet. Lancet 1998; 352 (Suppl 2): 39.
Q Is it likely that evidence-based medicine will stifle the lateral and innovative thinking that has led to many medical advances in the past?
A In the past, many medical advances have taken place through trial and error, often as a result of an individual's intuition. Obviously, if no-one's practice can vary from what is currently being done by the majority, this source of new knowledge will dry up. But it is unlikely that evidence-based medicine will act as a significant brake on innovation, for the following reasons:
- An increasing proportion of innovations come about as a result of knowledge derived from laboratory work. Genetic engineering, systematic alterations of existing molecules, and computer modelling are all examples. Innovations are identified as potentialy useful in the laboratory, and when a proposal is made to try them out on patients there is a proper case for a scientific trial.
- Many innovations are small improvements to existing treatments. Many of these will lie within the acceptable range of practice even under an increasingly evidence-based regimen.
- However successful the evidence based initiative, there will inevitably continue to be substantial variations in practice, although they will probably be less marked in the future than in the past.
- Improved means of auditing outcomes will pick up on an association with practice in the tails of the normal distribution and suggest a re-examination of current thinking.
A balance has to be struck between dull uniformity which stifles innovation and a laissez-faire attitude which permits a doctor to do anything that he/she can square with his/her conscience.
The reality is that many mavericks may take risks with patients without the careful self-control associated with a properly organised clinical trial.
It is probably a good thing that departures from current practice in the search for more effective care will in future have to be carefully argued, ethics approval sought, and data gathered in the context of a sound study design, in that it should enable the question 'Will this improve the care of the patient?' to be answered more certainly and more quickly, and at less risk to the patient.