FREE CHAPTER from ‘A Practical Guide to the Law of Medical Treatment Decisions’ by Ben Troke

Decisions about medical treatment can be about life and death, such as withdrawal of treatment or (not) providing CPR.  Or about quality of life, liberty and independence, which can be just as important.  But the legal (and ethical) framework around these decisions is often misunderstood, leading to distress and disputes at the very worst of times.  We have seen this in a few very high-profile cases, but there will have been untold others in private.

Should a patient always get what they want, or does “doctor know best”?  When a patient cannot make a decision for themselves, who gets to decide, and how should these decisions be made?   What is the role of so-called “next of kin” (and did you know that there’s actually no such thing)?  Can parents insist on treatment for a baby when doctors think it futile?  How are disputes in this context resolved and, better yet, how are they avoided?  And how can we act now to control what happens to us in future, when we may not be able to decide for ourselves?

For our most life-changing decisions, this is a practical guide to the law and how it really works, written to be accessible not only for lawyers, but also for clinicians, patients and anyone concerned about them.

CHAPTER 1 – CONTEXT

This book is about making medical treatment decisions, for yourself and for others. We will need to think about who decides what options are even available; how we inform and support patients to make decisions, and how we establish when an adult cannot make a decision for themselves and what we do about it; how we deal with cases about children; and how we should resolve disputes. Finally, we will set out a few things you can think about now if you want to exercise some control over how this will work for you in future.

Before all that, though, there are three themes run through this book like a stick of rock, and it may be helpful to pick them out and put them into a little context before we start.

• An ethical framework – especially autonomy v paternalism

• Doctor / patient relationships and trust; and

• Communication (and how to not get sued).

Ethics – autonomy v paternalism

We cherish the idea of consent out of respect for the fundamental ethical principle of autonomy – i.e. that people’s own lives should be determined by their own decisions as much as possible. (I have a picture by my front door based on the Dr Seuss version of this, that you can choose your own path, thanks to the brains in your head and the feet in your shoes.)

But autonomy is only one ethical principle. A competing principle is of beneficence: doing good. We will often want to intervene in someone else’s life and decisions because it will be better for them if we do (or so we think), and those driven towards the caring professions might well be at higher risk of finding it very difficult to let someone do something we think will harm them.

Equally, we might consider the ethical principle of non-maleficence (more accessibly put as “do no harm”)¹.

Finally, for these purposes, the principle of justice – of treating people fairly, for example in allocation of resources.²

Of course, the challenge lies in the inevitable situations where these four basic ethical principles, each in themselves undoubtedly good, pull in different directions.

For example:

• In what circumstances should we force treatment on someone who does not want it, because it will be good for them, or even save their life? Or, scaled up, should we put flouride in drinking water for the common good, despite the fact that some would not agree to this, given a free choice? (“Mass medication without consent” sounds less appealing doesn’t it?).

• What about vaccination? For each individual, it is no doubt better not to be vaccinated, given the risks, however small, as long as enough other people are to secure the “herd immunity” required for us all to feel the great benefit.

• How do we decide when to refuse funding of treatment – such as the latest expensive cancer drug – as a matter of fair resource allocation, when we know it would be good for someone, and they certainly want to have it?

• Should we respect people’s choices even to the point where they want help to end their own lives, and make it a legal right to have assisted suicide?

• Should a surgeon operate to separate conjoined twins when we know it is the only way to save one life, though we know it will certainly kill the other? ³

Many of these examples are beyond the scope of this book, but the first question of treatment in someone’s best interests, whether they want it or not, lies at its heart.

Of these four ethical principles, there is no doubt which is now the first among equals. Throughout society as a whole, at least in our western European culture, there is ever greater premium put on personal choice and individual rights. In health and social care we have seen this play out in some obvious and some more subtle ways.

One milestone was the Patient’s Charter in 1991, which set out an NHS commitment to meet very much a rights-based set of expectations. Over time, this was reborn as the NHS Constitution, from 2013, which again emphasised the patient’s right to be involved in decision-making, encapsulated in the phrase “no decision about me without me”.⁴

Other structural and policy reforms embedded the same priorities and “client focus” (in parallel with a wider trend towards integration between health and social care). For instance, the formerly separate systems for complaints in the NHS and in social care were merged in 2009, and the national guidance issued by the Department of Health (as it then was – it was rebranded the Department of Health and Social Care in 2017) was titled “a Guide to Better Customer Care”. I know plenty of people in the healthcare system more used to working with “patients” than with “customers”, who found this uncomfortable, and it does have a strong flavour of a service-on-demand and customer-is-always-right approach which I think can sometimes contribute to misunderstandings.

Whatever way the relationship is framed, though, trust and good communication are essential to avoid trouble.

Clinicians and Trust

Empowered consumers of health and social care, exercising their choice, driving improvements by spending their own health or social care budgets on their care where they want it. That’s been the policy, and it depends on informing those consumers, for example by starting to publish more and more data⁵ which, like anything, can have unintended consequences.⁶

But still, sources of information have flourished – such as “I Want Great Care”⁷ and “Care Opinion”⁸ – alongside the less focused output of the online commentariat and on social media.

This can play out through Dr Google, where the patient attends with a printout of their research and a pretty firm idea of what they think is wrong and what they think needs to be done about it.

Most clinicians I have spoken to about this would never say that increasing patient’s access to information is a bad thing, but it can add to the strain in consultation when a good chunk of the few minutes available has to be spent debunking myths from the internet or explaining why a treatment on which the patient has become fixated is inappropriate, or why something else might best be tried first.

It will be interesting to see how the growing market for privately funded GP services, and accessing primary care more generally as on demand and using technology, may change this dynamic further still, especially with the events of recent months (spring 2020) driving a step change in the use of video consultation.

How long can a model survive of “the doctor will see you now” and the “doctor know best” when it comes to treatment options in a world of expectations set by Amazon Prime and TripAdvisor, and information democratised by Wikipedia?

In parallel with the drive towards consumerism and individual choice, the reputation of the medical profession has had quite a few setbacks in terms of both knowing best and acting in unquestioned good faith.

We have seen horrifying examples of individuals from Harold Shipman⁹ to Ian Paterson¹⁰ causing devastation despite (and, in fact, enabled by) their white coats and medical qualifications. And scandals at Mid Staffordshire Hospitals¹¹ and Winterbourne View¹² have shown us that places of care can sometimes be anything but.

We feel less inclined to defer unquestioningly, leading to greater conflict and new battlegrounds.

Families feel obliged to be more rigorous about ensuring the quality of care (or more demanding, depending on your point of view); we increasingly see disputes arising over family or carers who insist on recording all care or carers, or seek to do so covertly (see the roaring trade in cameras embedded in bedside cuddly toys).

Conversely, we increasingly see care providers who want to exclude family from visiting, or control their behaviour, as staff face increasing challenge, if not abuse.

At an individual patient level, and perhaps especially in medical treatment for our children, we are less ready to allow a doctor the last word. We feel more ready to challenge, and to “battle” on behalf of a baby, who we characterise as “a fighter”, especially if they outperform an initial gloomy prognosis (sometimes given by clinicians trying, in good faith, not to harmfully inflate expectations).

Even setting aside the criminal or reckless, just as the human fallibility of our clinicians is increasingly exposed, there’s also a growing intolerance of error. Atul Gawande¹³ writes that in earlier times we would face ill-health with trust in healers doing their best against an unknown and unknowable foe. A bad outcome was more in the lap of the gods than anyone’s fault. Not so now. Collectively we know so much now about the medicine and the science that it is impossible for anyone to keep on top of everything. (In 2017, Robert Wachter wrote that the body of medical literature comprised around 24 million records and continued to expand at 2,100 articles per day¹⁴). Our reaction may be different because often the treatment is no longer unknowable, though our individual doctor may be just as blameless.¹⁵ Any failure comes to feel more human, more culpable. In tragedy, it can be human nature to identify someone or something to blame.

For all that, the level of trust in the clinical professions remains remarkable. One of my first jobs as a junior lawyer was on secondment to the Harold Shipman Public Inquiry, taking witness statements from the families of his potential victims. I remember my taxi into Hyde on my first trip to the Shipman inquiry. The taxi driver knew full well why I was there (having ferried a gaggle of young lawyers between train station and hotel over a period of months) and immediately said to me that what Shipman had done was terrible, “but he was a great doctor”. I find this less surprising now than I did at the time.

He explained what he meant was that Shipman was “an old fashioned GP” – he “always had time for you”, and “would come round to your house” to see you when other doctors were increasingly reluctant to do so; a slightly chilling thought in the circumstances.

People do still trust clinicians, at least much more than they trust anyone else. Even before the current outpouring of love for the NHS as a whole, in survey after survey over many years doctors and nurses always come out on top of the most trusted professions (judges sometimes do quite well in these surveys, by the way, but lawyers in general, well, less so). That trust is a precious asset, and it brings a heavy responsibility that it should not be used inappropriately. But it does not always seem to always be readily appreciated by clinicians themselves, who are much more likely to tell me about feeling they are on the wrong end of a “compensation culture”.

Communication, compensation culture, and how to not get sued?

It is true that the number of clinical negligence compensation claims has gone up over 10 years. It is also true that the cost of claims has grown enormously in that time¹⁶, though this is mostly due to the way that damages are calculated. But the reality is that the number of clinical negligence claims have been falling since 2013/14¹⁷, and even at their height the number of claims is a world away from the frequency with which things go wrong.

The evidence base for the actual number of adverse incidents is scant. In 2000, a report titled “An Organisation with a Memory” (OWAM)¹⁸ focused on patient safety and avoiding repetition of common errors, a particular tragedy which is difficult to avoid entirely in such a complex, vast and fragmented system. For these purposes, the key point made in OWAM was the sheer scale of adverse incidents (defined as “an event or omission arising during clinical care and causing physical or psychological injury to a patient”). Research by Professor Charles Vincent, a patient safety specialist at King’s College London, estimated that there were around 850,000 incidents a year among acute hospital in patients¹⁹, that one half of them were avoidable, and a third of them caused serious harm. Whichever way you look at those figures, a rate of compensation claims being brought of barely 10,000 claims pa even 20 years later can hardly be called a compensation culture.

This is not, by the way, to belittle or underestimate the experience of going through litigation (on either side) and there is powerful evidence of this in a paper which Professor Vincent also contributed to a few years earlier, showing the personal impact of litigation on clinicians.²⁰ They reported that of the clinicians who had faced a clinical negligence claim (whether won or lost), 79% felt distressed, 70% felt angry, 40% felt it affected their life, 34% lost confidence and 30% felt ashamed. Fully 19% reported wanting to give up medicine. I tried to keep this in mind when I was interviewing clinicians about just another routine case, as I might have seen it when I was defending clinical negligence claims at the start of my career, mindful how easily you can slip into glibly reassuring them that the claim is against the NHS trust they work for rather than them individually, as if that relieves all anxiety.

But if it is fair to say that we do not typically rush to sue a doctor just because something goes wrong, what does drive the decision to sue? I have heard claimants’ solicitors say time and again that patients and families are driven reluctantly to court as a result of the defendant clinicians’ failure to be open, explain and (where appropriate) apologise. With the complaints process exhausted, they say, litigation is the last resort. The compensation available is not the motivating factor, though it is all the courts can offer, since they have no power to offer the explanation or apology sought.

This is reinforced by a report by the Behavioural Insights Team published by NHS Resolution in August 2018²¹ analysing the motivation to bring a clinical negligence claim. This showed that nearly 90% of people who experienced an “adverse event” did not bring a claim. And of those that did litigate, only 6% said that their primary reason was to get financial compensation.

There is anecdotal evidence of patients and families coming to lawyers after a poor outcome from treatment determined to sue the GP for a delay in a referral for surgery. In fact, after independent expert have reviewed the records, the GP appears to have been blameless (or, at least, not negligent), but the surgeon might have fallen short in the performance of the actual procedure. We often hear the patient just does not want to sue the surgeon, who they felt was marvellous, and wants another opinion about the catalogue of failings they saw in the unsympathetic GP.

If you want to know how likely a doctor is to be sued, and why, look no further than the US medical practice insurance market. There, a bit of research was done in 1997 to help inform insurers set their premiums by better understanding which doctors were more likely to be sued (which is set out in Malcolm Gladwell’s “Blink”,²² all about the power of first impressions).

Wendy Levinson²³ took recordings of hundreds of doctor / patient conversations. The doctors fell into two groups – one which had never been sued, and the other which had been sued at least twice. There were striking differences between the two groups. Those never sued spent longer with each patient (18.3 v 15 minutes). They were markedly better at the soft skills of communication; they used more orienting or signposting comments to explain the process and the structure of the consultation e.g. “first I’ll examine you and then you can ask me questions”. When the patient was speaking, they were better at using “active listening skills” such as “minimal prompts” (”mm”, “go on”, “tell me more”) and they were much more likely to use humour (appropriately) and to laugh. There was no  material difference in the amount or the quality of the clinical information conveyed. It was not what they did, it was the way that they did it, as it were, and the rapport that this achieved with the patient appears to make them much less likely to be sued, regardless of the actual clinical outcome.

This was then taken further by another researcher, Nalini Ambady.²⁴ She took Levinson’s recorded clips, shortened them to just 40 seconds of each doctor talking to patients, split into two 10 second chunks for each of two patients. And then she blurred out the words being used, leaving only the tone of voice, rhythm and pitch, which students were asked to rate for particular characteristics, e.g. warmth, dominance, anxiousness and hostility. Astonishingly, she found that you could accurately predict the doctors more likely to be often sued based only on their tone of voice.– They were the ones described as sounding “dominant”.

Remember that being sued and being negligent are different things. Someone’s willingness to litigate against you does not necessarily mean that you fell short of the expected standards on that particular occasion, or generally. But it is sobering that the evidence suggests that the best thing a doctor can do to avoid being sued is to make sure that the patient feels listened to, and not talked down to, in any consultation²⁵.

As such, communication (listening, not just talking), as much as clinical skills, should be the focus for attention to stay out of trouble and, more meaningfully, to ensure that patients get – and feel that they get – the best care as well as the best treatment.

And good communication is fundamental to the law on consent, which is where we will begin, as soon as we are clear what options are actually on the table.

MORE INFORMATION / PURCHASE THE BOOK ONLINE