In praise of bolshie patients

Pharma Quality of care

The genesis of this talk was in the realisation that my ideas have changed over thirty years, and rightly so. The days when healthcare professionals told the public what they were graciously going to do for them have gone, I hope; and I see now that some of the things I used to think were completely wrong. In fact, they are so wrong that I have managed to come to this conclusion without the need for my wife to point it out to me.

In 2000 I decided that I was fed up with doing training courses that lasted a few hours, and I wanted to do something more substantial, and I saw an advertisement in the British Medical Journal for a Master’s degree in medical law and ethics at Glasgow University. With my wife’s support – and how generous she has always been in supporting me – I completed the degree and graduated in 2003 as a Master of Philosophy. Incidentally, my graduation ceremony was in the first week of December in Glasgow, and after it the university laid on orange juice in their quadrangle gardens, an event marked by the guests clustering in tight groups trying to keep warm.

Studying law changed the way I think. Any medical science is largely a collection of facts. Our exam questions are numerous but fairly short. Having to maintain an argument over essays of 5 to 20,000 words was a new skill I had to acquire, but a really valuable one, and it began right at the outset.

One of the first topics we tackled was that of consent. As you will know, whenever you are faced with an operation, the doctors will ask you to sign a consent form. Things have changed, but when I worked there this was largely a box-ticking exercise, a step you had to go through in order to get your operation, and there were elements of the process that I could immediately see were unsatisfactory. Let me concentrate on three.

First, we ask for your consent when we conduct surgery on you. After all, your surgeon is about to attack you with a knife, and as a judge noted as far back as 1913, that is a criminal offence that is only excused by the fact that you have agreed that he or she may do so. But have you ever been asked for your consent to receiving a medicine? We have assumed that you give your consent by turning up and asking for some kind of treatment; and you demonstrate continuing consent by taking the tablets. Except, of course, that a great many people do not take the tablets; a recent estimate was that £300 million in medicines goes unused in the UK each year. The authors of that report came up with five reasons for that waste:

  • Non Compliance – where the patient takes the medicines, but not in the intended way. For example, taking at irregular intervals or in incorrect doses.
  • Intentional Non Adherence – patient stops taking medication due to side effects or personal beliefs.
  • Unintentional Non Adherence – patient stops taking medicine due to forgetfulness.
  • Non-Preventable Waste – patient dies or a change in treatment means current dispensed medicines are no longer required.
  • Preventable Waste – patient stockpiles medicines “just in case”.

But it seems a little unfair for us to complain about intentional non-adherence when the patient was never asked to agree to take the medicines in the first place.

Second, an important and necessary step in obtaining consent is that all the possible alternatives are laid out for the patient. It is true that some patients find that unhelpful, because they do not feel equipped to choose between them. Many doctors report that patients say “What would you do?” or “Do whatever you think you should.” But that is not a reason to bypass this step. And too often it is omitted in talking about medicines with patients, and they do not complain. That is one reason why I think a bolshie patient is a good thing. It challenges us to give the explanation we ought to have given in the first place.

To some extent the NHS recognises this. It has two free services for patients that pharmacies provide. The New Medicines Service involves talking to patients when a new medicine is dispensed for the first time, and twice more during the first month, because the evidence is that if a patient is going to deliberately stop it is likely to happen during the first month. It is a common experience that when you leave hospital a lot of things are said to you, sometimes when you’re just relieved to be going home, and it is hard for patients to retain and understand what was said. The New Medicines Service reinforces that information when, we hope, people are better placed to receive it. An evaluation by the University of Nottingham showed that the service increases the number of patients who correctly take a new medicine by around 16%. For existing medicines, there is the Medicines Use Review. Some people refuse these because they think their doctor is already doing it, but they are confusing two different things. The doctor carries out a clinical review – is this the right medicine for the condition this patient has? – but our Use Review looks at whether you understand how and why to take your medicines.

Let me give you an example. We noticed that a gentleman ordered his blood pressure tablets every month, but did not always order his arthritis treatment. It turned out he had plenty left over. The reason was simple. The GP told him to take one with his supper, and some nights he didn’t have supper, so he didn’t take the tablet. When we explained that what the GP meant was to take it, but not to do so on an empty stomach, he took them more reliably.

The third imperative is that whoever collects your consent should be able to answer your questions and give you a fair and complete account of the pros and cons of the treatment that is proposed. Now, here I think we may still have some work to do. The last time I was in hospital the job of getting my consent was given to a junior doctor, and you have to ask whether such a doctor is in a position to answer all the questions that we might have. It would, of course, meet the case if they start the process and then fetch someone else if there is a difficult question. But it is important that people should not feel pressured to sign until they have had all the explanation that they feel they need, and if that means being a bit bolshie, so be it.

It is also important to note that any consent you give is a limited consent. It allows only what is specified, and we have moved away from the kind of consent form that says “Do whatever you want”. It is only sensible that for some operations we include a term that allows the surgeon to get on and fix something that he finds without having to stitch you up and then start again a couple of days later; and there is always the common law duty to act in your best interests which means that if you are unable to give your consent, we do whatever we think is best for you. I hesitate to mention this so soon after lunch, but it’s a good example. The very first operation I observed was for a man who was thought to have cancer of the penis and was going to have it amputated, but when the surgeon cut into the skin it became clear that actually it wasn’t a tumour, but a very large infected cyst. Now, the only thing the surgeon could do according to the consent form was to go ahead and amputate it anyway, but instead he drained the cyst and packed it with antibiotics. That’s what we thought the patient would prefer. On the other hand, there is a famous case, Perry v Shaw, where a surgeon was sued because having performed a tummy tuck on a lady, he used the spare material to give her an unexpected breast enlargement. She went to sleep as a 34B and woke up as a 40DD, and was unhappy about it, and his defence – “I thought she’d like it” – did not impress the judge.

So here we have the first legitimate use of bolshieness – you should be fully informed of the options, the risks and benefits before you begin treatment, and if you are not, you are entitled to be politely stroppy.

Let me expand on this a bit by referring to the work of NICE and other guidelines. NICE is such a big part of our lives that we forget that we have to explain why it is important to others. The National Institute for Health and Care Excellence weighs the evidence for each type of treatment and tells us what we should be doing. For example, if you have diabetes NICE will tell you that you should be offered at least six different drugs because you have an increased risk of stroke or heart attack. That does not mean that you must accept all six, or that your doctor will be failing you if he does not insist on all six.

Let me explain why that is with some examples. One of our patients was given a statin when she left hospital. She is 89. She said the doctor told her it would prolong her life, but quite reasonably she asked me “How much difference can it make at my age? And, actually, I’m not sure I want to live longer.” My advice to her is that she is entitled to say to her doctor “Thanks, but no thanks.” So long as he is satisfied that she understands the implications, the GP will usually be happy simply to note that it was offered and refused. You’re an adult, and you’re entitled to say no. We had a lady who was given a water tablet for her high blood pressure, but because she wasn’t very mobile she had some accidents and decided she didn’t want it any more. She wasn’t too polite about how she expressed it to her doctor, and I doubt he could have put the tablets where she suggested anyway without some difficulty, but she was entitled to say no.

Better that than that she should do what another patient did. She stopped taking her water tablets, but decided not to tell her doctor in case he was cross with her. When she developed fluid on her chest, he doubled the dose, except, of course, that now she didn’t take two tablets instead of taking one. She declined further and was admitted to hospital, where the doctors looked at the treatment she had been having and decided that if two tablets weren’t working they had better give four, but by injection because it was quite urgent now. Suddenly introducing a drug she hadn’t actually been taking proved fatal. So there you are; be bolshie, don’t be dead.

People worry that their doctors will be cross with them if they argue or say no. They won’t – or, at least, the majority won’t and none of them have any right to be. After all, we regularly discuss with people at the ends of their lives how much treatment they want. It is not at all uncommon for them to say “Thanks, but I’d just like to stop the drip and go home now, and let nature take its course.” Nobody yells at them “But you’re going to die if you do that!” It’s their life, and they have every right to make that choice.

Occasionally people will say “But life is a gift from God, and we have a duty to keep it as long as we can.” I observe, however, that if the fact that life is a gift from God trumped other considerations, St Paul would have told Christians to sign anything that meant they didn’t get martyred, and he didn’t. Given a choice between spending your Saturday afternoon in the garden and finishing up as a tasty snack for a lion, I know which way my vote would be cast.

I may add that if you decline treatment, you do not have to give a reason. It’s nice to know, just so we are confident it isn’t because we have misled or confused you, but you are not obliged to share it. In a famous legal judgment known as re T, Lord Donaldson said “An adult patient who … suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment …. This right of choice is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational, irrational, unknown or even non-existent.”

The other observation I ought to make is that the relationship between a patient and their pharmacist – or other healthcare professional – depends to a great extent upon trust. I am aware that like Mary Bennet in Pride and Prejudice, I may shortly be told that I have delighted you long enough, or I might continue at length about the grounds of trust. It matters because there have been several recent books pointing to an erosion of that trust. In fact, in many cases when we give consent, we give it not because of any rational argument we have weighed, but because at bottom we trust the professional concerned. Why do we do so?

There is an argument that trust derives from the professional standing. We trust doctors generally, even if we have not met them before, because we know that they have taken an oath to do their best for us. We know that they face professional sanctions if they do not do so. And we know of no reason why they would wish us any ill-will. Dr Shipman did not do a lot for that last argument, of course, but I worked on the aftermath of his crimes and it was remarkable that even after he had been convicted a lot of people in Greater Manchester still thought highly of him. It was easy to find people who believed that there must be some other explanation for the death of nearly a tenth of his patients.

This general trust – trust of a class of people – is one reason why some of my colleagues, particularly those who work for pharmacy chains, will argue that it doesn’t matter if you see a different pharmacist each time because they all work to the same procedures and protocols, and are bound by the same standards. All that is true, but our experience of this wonderful city and its people is that they prize the continuity of seeing a familiar face. They trust us, and they forgive us our mistakes because they know we are not indifferent to them.

I recently read an excellent little book by Professor Katherine Hawley, from the University of St Andrews, on the subject of trust, in which she points out that it would be impossible to live a life without trust. How could we sleep if we did not trust our partners not to put a pillow over our faces during the night? What could we eat if we did not trust that our supper was not poisoned?

And what is that trust built upon? It is built upon predictability. We trust because we believe that we know what the person we are trusting will do (or not do). I trust that Gillian will not strangle me in bed, because she never has, despite, no doubt, considerable provocation. I trust that she will not put deadly nightshade in my salad because it hasn’t happened yet. That is why lost trust is so hard to regain – once you haven’t behaved as predicted, how can anyone predict what you will do yet? It is, of course, possible to be predictably unreliable. David Niven once said of Errol Flynn that he was completely predictable, because he always let you down, so you never depended on him. But in our business we try to earn your trust, and to keep it once we have it, by relentlessly doing our best.

One of the delights of being in practice here for so long is that we have seen a whole generation pass through our hands. We have seen babies born who now have babies of their own; we have cared for people who were still vigorous and active, but who have become frail and dependent. We have been much blessed, personally and professionally, but we are very aware of Luke 12:48 and its reminder that much is demanded of those to whom much is given. You taxpayers paid for our education and we have been trying for nearly forty years to repay that debt in some small way.

To close: the celebrated management writer Robert Heller published a book in the eighties which mentioned my then employers, Allen & Hanburys, along with a group of others that had survived over 250 years – Barclays, Lloyds, Fry’s, Rowntrees, Terry’s to name but a few. Apart from a concentration on banking and chocolate, why had they survived when others did not, he asked? And he concluded that their Quaker beginnings had played a large part. Allen & Hanburys was also a Quaker firm and Heller argued that their belief in a duty to give their customers full weight at a fair price, to trade for the lifetime rather than the moment, was what enabled them to keep going. In short, they were trusted; perhaps less so now, but still more than some others. That’s how important trust is.

The person others might describe as a bolshie patient we see as someone who is simply trying to look after their own interests. We need more of them, because if I can’t convince you to do what I think is best, I have no right to demand it of you.