Changing expectations on patient consent: Will the profession ever wake up and smell the coffee?

By Mr. Bertie Leigh

– Advice from EAU’s Legal Nightmares specialist to prevent problems with the defence of consent allegations –

Legal specialists know that almost all consent processes that are used by the medical profession are not fit for purpose. Unfortunately, this is a truth universally there to be acknowledged whichever country you look at.

The problem derives from the changing, secular relationship between doctors and patients.

In some countries you can still get away with a more old-fashioned paternalist approach. Here patients expect the sort of minimal explanation that prevailed 50 years ago in Western Europe. The trouble is that patients’ attitudes change much faster than doctors expect. This is risky as often these cases are brought to court years after the event.

Let us look at the components of the problem. It is commonly accepted that a valid consent means that the patient has been advised on the advantages and disadvantages of the alternative courses of action that are available to them. However, this advice should also include treatment options that the clinician is unable to offer themselves for whatever reason.

The second self-evident premise from a legal angle is that, if the advice is not written down effectively it did not happen. This is because no doctor can be expected to remember all the options that they have discussed with any patient months after the event, especially with the clarity that will be required when things have gone wrong. If they claim to be able to do so without bothering to make a note the court is unlikely to believe them.

Thirdly, this obligation does not apply only when advising a patient to submit to invasive surgery. It applies equally strongly when the patient is advised against surgery or when nobody considered surgery and the patient was merely being reassured. Advice that imaging the prostate is unnecessary can be just as life threatening as advice to perform surgery. Yet for some reason doctors do not ask a patient to sign consent forms when they omit to do something.

Fourth, the consent form is at best an irrelevant distraction. It primarily records the fact that the patient consented. But in 45 years of practice I have never seen a case where that was disputed.

Of course it is self-evident that a doctor cannot make laborious manuscript records of every option that has been discussed with every patient, including those where no surgery or medical therapy was advised. It would bring the average outpatient clinic to a juddering halt after 10 patients had been seen.

The way forward
What the medical profession must do is to take advantage of the levelling of the playing field of knowledge that has taken place between doctors and patients. There is no reason why the patient should not be expected to do the overwhelming majority of the work themselves, including the creation of the record of the research that they have done. The doctor should be there to tell patients where they need to look and in some cases to create the learning materials that they need to use. Appropriate learning materials will be multi-media, videos, drawings, cartoons and media with ‘talking heads’ (in which doctors explain issues to patients).

Fortunately, the EAU has underpinned its commitment to good patient information with a website totally dedicated to Patient Information (patients.uroweb.org), which includes educational videos, explanatory visuals, and translations to many languages.

Ideally, these learning materials offered by the hospital should be IT based and create a record as you go along. They will be approached through the hospital website using a personal unique identifier, so that the clinical notes will contain a record of their learning process.

Most of this can be organised when a patient is referred to the urologist so that the average competent patient can be expected to arrive at the first consultation having done a lot of their homework. Those who have not done so for whatever reason can be shown into a side room with a screen to re-join the clinic later.

There will of course be many patients who will find this difficult. Some will find the IT a challenge and will need assistance from an IT technician if the clinic nurse cannot do it for them. Some patients are medically semi-literate and may need help in understanding the terms. For these patients the cartoons and videos that can be created to assist understanding will be invaluable.

The elderly with cognitive impairment will need special help. Some of them will refuse to do their homework – a specific record should be made of the fact before they go in.

Such an IT programme has some advantages over a clinician. In many large cities up to as much as 25% of the patients share no common language with the person who is counselling them. IT based programmes can be translated into every language that is likely to attend the clinic. The EAU patient information in many languages may also proof useful.

Doctors should be doing this, not only in order to protect themselves in Court, but because it is good medicine. There is ample evidence that the empowered autonomous patient who is able to take control of their own destiny does better when they do decide to have surgery. And they do far better during the other 99% of the time when they are avoiding surgery by pursuing sensible healthy lifestyle choices. Very soon doctors will be sued because they have failed to convey the sort of advice that their patients need in appropriately sophisticated terms.

Already we are seeing that actions about consent to treatment are not so much about whether or not a risk was mentioned, but about whether it was mentioned at the right time and whether it was explained in the right way. No-one can absorb and handle complex information about risk when they are frightened and excited just before an operation: this is so obvious that it is professional misconduct to try!

The word doctor means teacher and the quality of your teaching or advising will be as much on trial as the quality of your diagnosis, your ‘cutting and sewing’. You are all more or less in the advising business. Unfortunately none of the clinical notes that I am asked to defend suggest that this aspect of the clinical work has been given sufficient priority. Even very good caring doctors who are interested in explaining things to their patients do not make defensible records of the fact. They cannot, because the modern outpatient clinic is simply not set up for the purpose that it has to achieve.

How to improve?
Some urologists are real experts in creating multi-media films illustrating new procedures. Some of them are brilliant, but almost all of them are only explaining things to other urologists. Why not create your own film explaining e.g. the complex choices open to someone who has just been diagnosed with prostate cancer? The best video award winner will not only make a great contribution to good patient care, but will also receive an official award and be a true hero earning the thanks of their colleagues and patients.

On Sunday 22 March 2020 I will again be participating in the Nightmare Session on Robotics during the Annual EAU Congress in Amsterdam. For 2021 I challenge urologists to submit more patient oriented educational materials, but also the organisation to acknowledge great achievements in this field.