Omissions: reading the Kennedy report on Ian Paterson

 

This imagined reflection by a doctor who worked with Ian Paterson is, of course, ill-informed. I was not there. But I have read Sir Ian Kennedy’s brilliantly written report (2013), and think that the messages it contains should be seen by the wider medical community. The report is 166 pages long, but perhaps this ‘story’ will help introduce people to it.

In the excerpts from the reports that follow the reflection, I have removed the names of clinicians. However, it is all in the public domain. The Kennedy report focuses on Mr Paterson’s unacceptable surgical technique, and the NHS Trust’s slow recognition and response. It does not examine the unjustified operations and investigations in the private sector, for which he was recently convicted.

This article sits with two other posts, ‘Why Michael didn’t blow the whistle: pub scene’ and ‘The eyes and the ears: why Adam blew the whistle’. Like those, it explores a doctor’s internal battle of the conscience, insecurities and the concept of moral bravery in the workplace.

 

***

 

“I wasn’t directly involved, but I was in a position to observe. When he was suspended I wasn’t surprised; it was high time. The criminal stuff, that did come as a surprise. I had no idea he was doing operations unnecessarily. But this is less about him than us, as a group. About me.

“We knew he was no good. His reputation preceded him, and as time went on a few people discovered firm evidence that he was an outlier. So your question is valid – why didn’t we act sooner? Why didn’t I?

Ian Kennedy

“When the weight of complaint was sufficient, action was taken. But before that, for years, we did what Kennedy said we did in his report, we worked around him. That’s what you do with difficult personalities. A jagged rock in the stream, which will not be eroded. The water goes around it. Decisions were made without him. He was excluded from the panel when the second surgeon was appointed. They couldn’t risk having him anywhere near the process.

“I watched him in the MDTs. He led from the front, made decisions quickly, and helped to ensure that the huge list of patients was dealt with. Snappy assessments and decisions were necessary. The referrals never let up. From time to time the oncologists pushed back, about the type of surgery, the need for revisions when you’d have expected a cure… but their searching tones changed to resignation after a while. They had done an audit on the resection margins, had proven he was an outlier, but nothing changed. What could they do? And anyway, they, the ones who were at the receiving end, who knew the outcomes were not right, didn’t actually work in the same Trust. You could see their faces, a bit fuzzy on the video link during the MDT… and they just looked neutral.

“The signal had been raised, the data had been forwarded… they say we are all managers, but we aren’t.  We are clinicians who rely on senior managers to tackle the problems while we get on with our jobs, which is seeing patients. That’s what they are for, to review the whole picture and make a judgment call.

“Okay, you say, what about your responsibility as a doctor to keep the pressure on, in the face of managerial inertia and an ongoing threat to patient safety. Well look at it… there was an external peer review around this time, and it concluded that apart from needing a few tweaks, the service was sound. In fact it was congratulatory. Once I heard that, I began to wonder if we, the doubters,  were the ones who had got it wrong.

“To keep the pressure on in this kind of situation you need to have absolute confidence in yourself. It’s got to be more than a suspicion or a sense of unease. So, if you hear that a review or an audit has been conducted, and that the people upstairs see no indication for urgent or fundamental change, you back off.

“Yes, even if you know, in your heart of hearts, that he’s probably doing harm. Because the risk in keeping your head above the parapet is substantial – not that it will be blown away, the NHS is not like that nowadays – but that your everyday professional life will become deeply unpleasant. There is enough sadness in cancer medicine, in the illness and grief we meet daily. If your interpersonal relationships breakdown, if you can’t look at your colleague in the eye or have a conversation, then coming to work becomes miserable. You might say that a little bit of discomfiture is nothing compared to protecting patients, but it’s all a balance. We go through our careers observing colleagues who may well under average, but we can’t act to remove all of them. Half of us are below average by definition, aren’t we? Quality lies on a spectrum. Who am I to say, not bring a surgeon, where one should lie on that spectrum?

“I did think about raising hell, once. This was when I met a patient who had a recurrence in breast tissue that should have been removed first time. She was living proof that his surgical method was wrong. There in front of me was the embodiment of disappointment and suffering, and also of dishonesty… because when she consented to her mastectomy she did not know that his particular method, to leave some fatty tissue behind, put her at a greater risk of recurrence. She, and her husband, assumed that the person in front of them knew best, that the expert was an expert, and would only suggest a treatment that was effective.

“When I saw the situation from the perspective of the patient, I shook myself out of my comfort zone, and I went to speak to someone. I won’t say who. And that conversation cooled my anger. Another perspective was provided. It was explained to me… that he carried the service, that he was industrious, not lazy… which you can’t say for everyone… that the patients trusted him and that didn’t happen accidentally, that there was actually an infrastructure in place for monitoring people like him, called appraisal, which he flew through each year. I walked away from the meeting with a new understanding. I didn’t have to sacrifice my professional quality of life, I didn’t have to go on a mission to get this guy out. Others were aware of the ‘problems’, and they were generally happy that although he was an outlier, he did not lie far enough outside the norm to be stopped.

“And of course, they were wrong. Perhaps they were all looking at each other, talking to each other, and hearing the same thing. Echo chamber. There is no real problem here… so many patients treated… targets met. Targets met… the echo.

“When, as a non-surgeon, you look at a surgeon, there is a certain awe. It sounds childish perhaps, and I’m no worshipper, but I know – we all know – that the job they do, cutting into others, is different. It takes confidence and skill to get through the training. There are technical factors that the non-surgeon cannot hope to understand. The interaction between tissue and metal is a mystery to people like me, I can’t judge it with confidence. The outcomes yes, but not the technique. That requires others to come in a make a judgement. The Trust did that… and we did not see the conclusions, not for years.

“These are not excuses. I am not proud of my inaction. I accept I played a part in the acquiescence. If I had made more of a fuss, perhaps fewer patients would have undergone bad operations. But for all of us to watch for 8 whole years between 2003, when the first concerns arose, and his exclusion from the Trust in 2011, it must have been something more than individual weakness… it must have been a permissive environment that prioritised surface efficiency over quality. Kennedy’s report focuses on the role of the non-executive directors, who incuriously accepted what they were fed by the executive, who had a rose-tinted view… on the secrecy of HR processes, on reports and audits being unsupported… organisational. Cultural. He does not put the blame on individuals like me, even though we were the ones of knew…

“And next time? That’s the problem you see. Although I can recognise my omissions in this case, I’m not sure I’ll act differently next time. Because you don’t know, until you’ve seen the proof, that the doctor you are worried about is a doing real harm, or is actually malign. You might have your suspicions, but the proof – which in this field is, ultimately, death – does not present itself.

“Unless we all agree that a certain degree of suspicion, a certain number of reports or complaints should result in suspension, we are not going to put these people on gardening leave just in case. Our clinical services could sustain it. There isn’t enough slack in the system. There wasn’t enough slack to give the two guys who were asked to write reports the time off from clinical duties to produce something quickly. It one of them took three months. We need the time and the space to work on these issues. We need to act on risk, not proven harm. In doing that, we might have to suspend five surgeons to confirm one case of unacceptable practise. ‘NNS, the number needed to suspend’ – do we buy into that? Perhaps we should, because when that risk is proven to be real, the time elapsed will have seen more patients come to harm while we vacillated.”

 

***

 

Excerpts from the Kennedy report on which this fictional reflection is based:

 

‘He came with something of a reputation as being a difficult person to work with. When he applied for the appointment, Dr _______, a senior manager at Good Hope Hospital, telephoned one of the Medical Directors at the Trust, Dr _______, to alert him to the fact that Mr Paterson had been the subject of an investigation and suspended in 1996 following an incident in which an operation on a patient had exposed the patient to a significant risk of harm. A review had been commissioned by the Royal College of Surgeons.’

 

‘That said, there was a level of informal knowledge. As one of the senior radiologists, told me, “To be honest, when we heard he was coming … it was, you know, ‘What’s gone on then?’ His reputation was well-known as being difficult and having open rows with a colleague at Good Hope. … it’s always a surprise to us why they took him on when they knew he was trouble”.’

 

‘Mr Paterson was described as high-handed to the point of being dismissive of colleagues. Forewarnings of this pattern of behaviour were already evident when Mr Paterson worked in the vascular unit. This unit was run in a very collaborative way, but Mr Paterson did not participate and rarely attended the MDT. When Mr Paterson moved to breast surgery, he behaved in a similarly challenging way. The hope was, it appears, that the managerial and governance arrangements in place would deal with whatever had to be dealt with. It was a forlorn hope.’

 

‘He had been the subject of an investigation and suspension two years previously by his then employer, Good Hope Hospital and had been required to undergo a period of supervised practice before recommencing laparoscopic surgery. The Trust was advised of this prior to his appointment.’

 

‘He is described as charismatic and charming and was much-liked by his patients. He was not, however, a team-player in an area of care which is absolutely dependent on clinicians working efficiently and effectively as a team.’

 

‘They [his colleagues] were faced by an awful ethical dilemma: what to do about the patients whom they were seeing who were supposed to have had a mastectomy but had not, in fact, had one…’

 

‘The Report overlooked a crucial issue: the issue of consent. Women were giving their consent to a mastectomy. But, on occasions, a variation of a mastectomy was being carried out; what became known later as a “cleavage sparing mastectomy”. This was not a recognised procedure. Women did not consent to it in any properly informed way.’

 

‘Senior managers saw Mr Paterson at the time as a highly effective surgeon performing efficiently, enabling the Trust to meet its targets.’

 

‘The concerns over Mr Paterson’s clinical competence went unaddressed. Mr Paterson continued to operate as before for nearly four years. The oncologists who were based in another Trust felt ignored. They had expressed their concerns and supplied evidence. They felt that no-one at Mr Paterson’s Trust was listening.’

 

‘They were told the good news from the Report of the Peer Review in 2005. They were not told of Mr _____’s Report, nor the less favourable views expressed by the initial and follow-up QA Visits in 2004, and the recommendations which followed. Good news was preferred to true news.’

 

“…we did raise that we had some concerns and we were told not to worry about it, so for the next few years we didn’t say anything”

 

‘They took the view that because they were not surgeons, they were defined out of competence. As Dr _______ put it, “I had taken the trouble to go through 100 cases, two thirds of my case-load for a year basically, and anything other than the most rudimentary examination of that would have shown substantial problems and the Trust took not a blind bit of notice of it and, not only that, they swept it … under the carpet”.’

 

‘When the Trust decided to make a new appointment in 2007, Mr Paterson was excluded from the process of selection, despite his being the leading surgeon, for fear that he would again put off any applicant. This is just one example of how senior managers behaved, towards Mr Paterson. Rather than confront him, they preferred to work around him.’

 

‘The new surgeon appointed in 2007 soon began to raise concerns about Mr Paterson’s surgery after seeing some of Mr Paterson’s patients, under the newly introduced system of cross-cover. The senior managers decided to launch an investigation.’

 

‘… if the issue of consent had been identified, as it should have been, a reason to require Mr Paterson to cease operating had existed for several years earlier.’

 

‘He [a colleague] talked of “raising his head above the parapet”. This speaks volumes about the perception of the way that the Trust then worked: that raising concerns was to be characterised as putting your head above a parapet, with the implication that the head would be shot at rather than welcomed and invited over the battlements to talk further.’

 

‘He realised that what he lacked was proof that women were being put at risk. The only way that he would obtain that proof was if women presented with recurrences of their cancer. And given that it might be several years before recurrences occurred, there was nothing he could do in the meantime.’

 

‘Evidence of actual harm, except in the most obvious cases, is usually hard to come by. It takes careful documentation, proper sampling and statistical analysis. Without all these, the concerns will be at risk of being dismissed. Dr ______ provided evidence but it did not show harm. It showed a deviation from accepted practice and a risk of harm.’

 

‘They told me that by the time their own concerns were coming to the fore, “everybody was aware of this”. One replied, “… it’s like stating the bleedin’ obvious, they already knew. … the senior management had been informed by the rest of the team, the consultants, and I can see that us adding our voice to that may have had – well, I don’t believe it would have had any effect but I can see that there is an argument that you could say, well, you know, you didn’t raise concerns as well but they’d already been raised…”.

 

‘…once the HR procedures were invoked, everything was covered by a blanket of confidentiality. Like others, they were kept in the dark.’

 

‘Organisations can tend to become closed, to exclude others and become disinclined to listen to the voice of “outsiders”. This is usually a bad sign in terms of the performance of the organisation… The “outsider” may see himself in such terms, feel he has done his bit and retreat to familiar territory.’

 

‘It is impossible to overstate the emotional burden that he and others shouldered for years. As Mr _______, who carried out an investigation in 2007, put it to me, while he did not want to emphasise the element of emotion in what he heard as he gathered evidence for his Report, “to see someone virtually in tears was an eye opener”.’

 

‘He realised that what he lacked was proof that women were being put at risk. The only way that he would obtain that proof was if women presented with recurrences of their cancer. And given that it might be several years before recurrences occurred, there was nothing he could do in the meantime.’

 

‘A concern about the practice of a clinician is raised. It is perceived as a criticism of the clinician rather than a concern about patients. The perspective is that of the clinician. The response of managers to the person expressing concerns is to demand evidence: to “put up or shut up”’.

 

‘The call for proof, in a situation such as the one under review, was based on two flaws. First, it proceeded on the basis that the issues at stake were scientific and technical and could and should only be addressed scientifically and technically. This is the way that clinicians tend to think. It is their comfort zone. And, it allows arguments about data and its interpretation to go on for years. The flaw is that, while there may be technical issues to address, the primary issue is that concerns are being expressed about the care of patients [   ] the proper response is to stop and look.’

 

‘Peer Review Visits do not have sufficient rigour to be regarded as a reliable guide to performance. They should either acquire the necessary rigour or be regarded as a useful exercise in bringing people together but not a serious examination. Currently, organisations may present the results of a Peer Review Visit in self-congratulatory terms, even though, on occasions, self-congratulation, on a more careful analysis, may be unwarranted. Patients and the public, therefore, should be alert to this when forming a view on the performance of a service or unit.’

 

‘Further light is cast on the failure to grasp the importance of consent by the practice, which I still encountered in 2013, of clinicians talking of “consenting” patients. The objections to this awful phrase are not merely linguistic. They go to the heart of a proper understanding of the relationship between patients and clinicians.’

 

Smoker and doctor

The approach to many hospitals is blighted by an oncogenic miasma of second-hand smoke. It’s less of a problem than it used to be, but even now I pass wheelchair bound patients coughing over a fag at eight in the morning. Depending on which entrance I use, there may be a sign above their heads saying ‘STRICTLY NO SMOKING’. My reluctance to tell them to stop, or to move beyond the hospital’s boundary, says something about my identity at work.

If this was a restaurant, a train or a shop I would be the first to face them and ask politely that they stop. If there was no response, my natural reticence would do battle with my genuine annoyance/anger, and between them would work out whether I remonstrated or turned away – the older I get the more likely I am to escalate. But not with the smoking patient. Why?

It is because they are patients. What I want to say is, ‘Put that cigarette out. You know you’re not supposed to smoke here. Why shouldn’t you obey the rules? And don’t tell me you can’t go out because you’re in a wheelchair… one of the others here could take you.’ If no response, a part of me would want to continue, ‘You make this end of the hospital look horrible, why should all these people coming to work have to meet a cloud of smoke first thing in the morning… and look at all the butts on the ground, smoking doesn’t automatically give you the right to litter…’ And then, the transgression – a moral judgement, ‘Anyway, you wouldn’t be in here with this [amputation/heart problem/lung problem] if you didn’t smoke.’ This being said entirely without evidence, but as a manifestation of my frustration.

Yet even to ask them to stop or move is uncomfortable, because in doing so I am breaking out of the role of doctor, who strives to understand patients and shies away from criticism. Addiction is to be met with sympathy, allied to an agreed and constructive strategy to reduce it. When an alcoholic patient of mine returns to the ward carrying the smell of vodka, I am exasperated, but I do not criticise. That will do no good. Behaviour is challenged if clearly anti-social, but not overtly vilified. Doctors don’t come to work to tell people off.

So the doctor looks at the smoker, tuts, and moves on, leaving any correction to the security patrol who will surely pass by in half an hour or so. They, I hope, will not be inhibited by the instinct, magnified by training, to empathise and understand.

 

Anger management

The four humours

 

Riding into work, I watched the cyclist in front try to weave through the gap between a bus and the curb. The bus was in the cyclist’s lane, having failed to move out into the road properly after leaving the last stop. The cyclist couldn’t quite fit through the gap, and he smacked the side window with his hand. Then he shouted something unpleasant. The driver moved the bus out, the cyclist hurried on, and following through I glanced at the driver’s profile. He had the inscrutable, hardened expression of one who spends his days in the firing line, bearing the brunt. The cyclist’s abuse did not seem to register. The driver had acquired the ability to absorb negative energy without displaying any sign of impact.

I wondered… do we do this, in medicine?

Meeting anger (or its junior relations, impatience, frustration, exasperation) is inevitable when you work in the public sector. Customers, clients, or in this instance, patients, interact daily with systems that are both leviathan and byzantine. They come in fear for their own health or the health of a relative. Even when things go smoothly, from an organisational point of view, disease can lead to sudden changes, it can engender disbelief that nature can be so cruel, and cause unexpected grief… with the result that people feel angry. How could it be otherwise?

During an advanced communication skills training course, I learnt (if I did not know it already) that anger is not a primary emotion, but a sign of something else, usually fear of the unknown, or uncertainty. Sitting opposite an actor who recreated the tenor of previous real-life interactions with terrifying accuracy, I let anger unfurl itself, allowed it to fill carefully measured pauses, and drew out the underlying driver. To do this required active listening and genuine empathy, but also a little of the bus driver’s placidity.

The natural reaction, when accused, say, of disgraceful inefficiency, of trying to save beds, of ‘writing someone off’, is to defend oneself. It is tempting to tackle the issues forensically, and explain in detail exactly why a certain management strategy is being recommended. As the doctor, you have the details at your fingertips, you know your subject. You can easily out-argue an angry patient or relative with hard logic.

But to win the argument is not the aim. That will not win them over. The desired outcome is to let the person express their underlying concern, perhaps one they haven’t yet acknowledged even to themselves, and to help them resolve it. The route may not be pleasant, if bad news has to be given and its implications explored. The result may be quiet acceptance that this is life’s lot, and there is little more that can be done. Thus goes the narrative in which we calmly defuse a hot situation.

But there are times when the anger displayed is disproportionate to the situation. The underlying problem may not be fear, but an unrealistic expectation of how the clinical service runs. Or the hyperbolic reaction of an individual who is hard-wired to access fury at a low threshold. Doctors and nurses who work in Emergency Departments will know this.

In these situations, it is not always appropriate to absorb and to adapt. Sometimes it is necessary to respond, and to tell it how it is… if that can be done safely. On these occasions, the authority that resides in medical staff comes into play. ‘Sorry, that’s just not possible,’ or, ‘I’m afraid we’re not getting anywhere, I’m going to have to ask you to come back when you’re feeling calmer…’  Doctors are allowed to call out unreasonable behaviour. It is reasonable to display personality, and to demonstrate normal human reactions to challenging behaviour. In my experience this encourages the angry patient or relative to recognise that the person they are talking to is not a faceless representative of the larger organisation. They are probably doing their best. They can be injured by words. The situation is difficult for all involved, doctor or nurse, and patient. Let’s work it out together.

Perhaps, if the bus-driver he had been able to do so safely, he should have braked, stepped out of his cabin onto the road, and asked the cyclist to be reasonable. Or perhaps not; you never know what’s going to happen on the roads nowadays.

 

Not in my name

 

A recent coroner’s report caught my attention (highlighted by HSJ’s Shaun Lintern via Twitter). A patient died from a ruptured aortic aneurysm, and during the investigation it was discovered that it had been seen on a CT scan four years earlier. However, the patient never came to hear of it, the GP was not informed, and no follow-up was arranged. The coroner now requires the Trust, through a letter to the Secretary of State for Health, to review its arrangements for flagging up ‘non- cancerous but significant and potentially life-threatening findings’ on scans.

The aspect that worried me was that the consultant, who had read the report and was intending to tell the patient in clinic 5 days later, never saw him. He was seen by a trainee, and the trainee either did not see the scan result or did not understand its significance. This made me think about clinical decisions being made in consultants’ names, but without consultants being aware of them. Does this really happen? Yes.

Consultants lead teams. In some clinics, 30 or 40, even 50 patients will be seen in a consultant’s name, but because the consultant is only able to see perhaps a third of those personally, the rest will be seen by trainees. Those trainees will have some specialist knowledge, but they may be three or four years out of med school. As trainees, they are supervised, but the level of supervision will vary.

During my training, I never saw a clinic where trainees discussed all of their patients with consultants. Rather, consultants relied on trainees to use their judgment and ask questions about challenging cases when they felt it was necessary. Then, as now, many patients were seen, investigated (and perhaps discharged) without the consultant having been directly involved in the decision. This is more common in bigger hospitals, where there are more trainees and larger clinics. It may sound alarming, but just as junior doctors see patients in the emergency department or on the wards, and make important decisions day after day, so they do in clinic too. (In fact, the terms ‘junior’ and ‘trainee’ sit uncomfortably with experienced professionals in their thirties.) Nevertheless, if a trainee misses the point entirely, or overlooks a subtle sign or important result, there is always the possibility that a dangerous conditions could slip through the net.

On the wards, every action and decision is made in a consultant’s name. I remember explaining to relatives, and on one occasion a coroner, why certain clinical decisions were taken by another – perhaps at night when I was not even in the building – but ‘in my name’. When pressed by both whether I thought those decisions were ‘right’, I had to pause. If it had been me on the ward at that time, I might have interpreted the information differently. I might have prescribed a different drug, or referred to another specialist sooner, but… it wasn’t me. It was a trainee, and they did what they thought was best. It wasn’t wrong, but it wasn’t necessarily, in retrospect, as right as it could have been. If there were errors in judgement, short of outright negligence or something amounting to an incident that requires reporting and the duty of candour, it will be dealt with through their educational supervisor. It would seem wrong to allow the full weight of responsibility to lie on the trainee’s shoulders. After all, I have to remember – a few years ago, that trainee could have been me.

So what is the consultant’s responsibility here? Are they truly responsible for the patient’s outcome, even though certain important decisions are not in their control.

Well someone has to be responsible. Consultants stay in one hospital for a whole career (usually), while trainees move on. In the case of the missed aneurysm there was a delay of four years before the error was noted. The trainee who may or may not have seen the result, or who failed to chase up the results of the scan, would have moved on. They are out of the frame. It was the consultant who had to explain what happened to the coroner. In that case, ‘the system’ took the blame (the way in which x-rays were reported and flagged). This is often the case, and in a blame-free culture that encourages reporting of error, it often has to be the case.

The system is often inefficient. The system may have intrinsic gaps which are unsafe. As doctors, we complain about the system all the time, but perhaps this is where our responsibility truly lies. To be open to the possibility that the system we are working is imperfect, and to accept of our role in improving it. That is why consultants must also be continual improvers of quality. It is not enough to moan. If weak areas are identified, we must engage in strengthening them. If we find gaps, we must close them. We must complain, escalate, and help to fix. That is the quality that should be scrutinized, rather than the (superhuman) ability to detect and personally manage every patient who passes through our service.

 

This private life

How far does the right to ‘private life’ go? Noel Conway, who has motor neurone disease, feels that his inability to arrange an assisted death without fear of his ‘assistant’ being prosecuted, is an intrusion on his right to private life. He is barred from taking steps to manage his death in the way he would like. Additionally, his team will argue that the current law results in someone with severe physical disability such as his being discriminate aganist. Thus, he proposes that two articles of the European Convention of Human Rights (ECHR), 8 and 12, are contravened by the 1961 Suicide Act.

Article 8 has been examined in relation to end of life issues several times over the last few years. Most recently, the Janet Tracey case touched on it from a quite different direction – was her right to private life infringed by medical staff who did not engage her in discussion about a DNACPR notice?

It is interesting to look at the Tracey judges’ reasoning in the light cast by Noel Conway’s situation – a legally dubious exercise I am sure, but possibly helpful in view of the fact that our legal process relies on precedent.

Firstly, do DNACPR decisions have anything at all to do with assisted dying (AD)? I would say yes, insofar as discussions and decisions around CPR relate to what goes on in the last hours or minutes of life. They relate to patients wishes as regards dignity, and how their body is physically handled. They reflect a patient’s attitude to mortality, and whether they feel ready to die without final, heroic measures (of course, we know that the CPR decision does not ultimately rest in the patient’s hands, but their view on it remains of paramount importance).

The judges* in the Tracey case thought so too, for they invoked the case of Diane Pretty (see below), confirming that from a legal perspective there is a degree of overlap,

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The judges begin by setting out the case against the medics (embodied in this instance by the ‘secretary of state’ [SoS]);

The claim as now advanced against the Secretary of State is that he breached Mrs Tracey’s article 8 rights by failing to publish national guidance to ensure (i) that the process of making DNACPR decisions is sufficiently clear, accessible and foreseeable and (ii) that persons in the position of Mrs Tracey have the right (a) to be involved in discussions and decisions about DNACPR and (b) to be given information to enable them so to be involved, including the right to seek a second opinion.

The Tracey case was about consultation, what was said (or not said), rather than about what was done or not done. So in this regard, extrapolating to Noel  Conway’s situation is of limited value. However, the judges are sympathetic to the barrister who is presenting the case against the SoS;

Mr Havers QC submits that article 8 is engaged by a DNACPR decision because it concerns how an individual chooses to pass the closing days and moments of her life and how she manages her death: see Pretty v UK (2002)

And,

It is a decision which concerns a patient’s personal autonomy, integrity, dignity and quality of life.

They seem to accept that Article 8 is highly relevant to end of life scenarios.

 

Then the view of the opposing barrister Mr Sachdeva, is explored,

He submits that it is not sufficient to say that article 8 is engaged simply because the decision which is under consideration impacts on the physical integrity and autonomy of an individual. But he has been unable to identify the criteria by which to determine whether article 8 is engaged by the withholding of medical treatment. 

But this is rejected in a powerful paragraph from the judges,

In [our] judgment, however, none of Mr Sachdeva’s submissions justifies the conclusion that article 8 is not engaged by a decision to impose a DNACPR notice.  A decision as to how to pass the closing days and moments of one’s life and how one manages one’s death touches in the most immediate and obvious way a patient’s personal autonomy, integrity, dignity and quality of life.  If there were any doubt as to that, it has been settled by the decision in Pretty.

 

We know that Diane Pretty failed in her attempts to prove that a right to choose death was not the same as a right to private life – she took it to the House of Lords and the European Court of Human Rights.

As A.C. Grayling summaries in this article,

– –  Mrs Pretty’s lawyers based their arguments on the most important rights in the [European Human Rights] Convention: the right to life, the right to be protected from inhumane treatment, and the rights to privacy and freedom of thought and belief. They argued that these rights give Mrs Pretty the right to choose when and how to die. The grounds they put forward were, first, that a right to life includes a right to die; second, that if Mrs Pretty is denied the chance to end her life before it becomes intolerable she would in effect thereby be subject to inhumane treatment; and third, that her rights to privacy and freedom of belief give her the autonomy to decide what to do with her own life.

The judges disagreed with all these arguments, saying that they ‘stand the whole purpose of the Convention on its head’ on the grounds that the Convention’s provisions aim at protecting and sustaining life, and that because ‘death is the antithesis of life’ the Convention accords no right to die nor to choose when and how to die.  – –

#

Back to Tracey; other cases involving successful applications that Article 8 was contravened are covered, including one in which a DNACPR decision was made and diamorphine given [Glass v UK (2004)], and a case where an abortion was requested by a woman who suffered from such bad myopia that she did not think she could cope with the pregnancy. The judges recall that in this case,

The [European Court of Human Rights] also reiterates that “private life” is a broad term, encompassing, inter alia, aspects of an individual’s physical and social identity including the right to personal autonomy, personal development and to establish and develop relationships with other human beings and the outside world.

Article 8 is therefore seen to extend to aspects of personal identity that are clearly relevant to a person approaching the end of their life.

 

Evidence from The Equality and Human Rights Commission is then reviewed, which emphasises that any decisions based on the quality or value of life must be led by patients,

Mr Wolfe QC, for The Equality and Human Rights Commission, emphasises the difference between (i) medical issues (such as whether CPR might work) which are matters for the clinicians to decide and (ii) questions relating to the welfare of the patient in the widest sense (including social and psychological issues) which are essentially for the patient to decide. It is for the patient and not for others to say that a life which the patient would regard as worthwhile is not worth living…

 

Later, the Tracey judges bring the NHS constitution into the argument; it says,

 “You have the right to be involved in discussions and decisions about your health and care, including your end of life care, and to be given information to enable you to do this.  Where appropriate, this right includes your family and carers.”

 

Finally, in the ‘OVERALL CONCLUSION’ , they refer to,

…autonomy, integrity, dignity and quality of life of the patient.  It is accordingly critical to good patient care. The duty to consult is of course part of a clinical process.  That process is individual to each patient albeit that it is informed by good clinical practice.

#

We are all interested in how Noel Conway’s case at the High Court goes. In a way, we are all judges, as many of ‘know’, or think we know, what is right already. (This brief and very confident ‘anti-‘ piece in the Spectator is an example; it seems so straighforward to the author!) I worry that this case will go the way of others (most recently that of Tony Nicklinson), with judges concluding that the societal implications of legalising AD are too great, and that parliament, as the natural forum for discussing societal change, must decide. If that is the case, we are unlikely to move forward in the short term.

However, I think this reading of the Tracey judgment shows that Article 8 is intimately relevant to how people wish to be treated as they move towards of the end of their lives.

 

Note:

* Lord Justice Ryder and Lord Justice Longmore – their separate comments are presented here as though co-written by ‘the judges’.

#

 

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Think like me

Last week I delivered a lecture about resuscitation decisions. Part of it was a scenario, carefully thought out with my co-presenting colleague. We described a lady in the 80s, living in a residential home, with a degree of heart failure and some other co-morbidities, who had been admitted with pneumonia. There were markers of severity indicating a 20% risk of death. In this scenario she deteriorated overnight, and was found ‘barely conscious’ and in respiratory failure.

We asked the audience to put up their hands if they thought the patient should have a ‘do not attempt resuscitation’ (DNACPR) notice. I was amazed to see only around 15% of the audience put their hand up. Then we asked if they would consider a ceiling of care, for instance non-invasive ventilation or, all the way to intensive care and mechanical ventilation. Most felt that non-invasive ventilation on HDU would be the appropriate limit of intervention. But I couldn’t get over the small number who would have started to discuss resuscitation status at this stage. Why didn’t they think like me?

This scenario was deliberately “grey”. We didn’t want to make it obvious that the patient was dying, for instance with terminal cancer or end-stage heart failure. But we wanted to describe a patient who was not improving. In my mind, having considered the case carefully before the lecture, the fact that she was to deteriorating despite antibiotics meant that if her heart did suddenly stop, the chance of surviving would be very small indeed. Advanced life support might temporarily restart the heart, but would not reverse the problem, which was pneumonia. It seems clear to me. Why not to my colleagues?

Could it be that I was wrong?

Probably not, in terms of the evidence base around prognosis and resuscitation. My colleague and I had reviewed the studies. We could show that a successful outcome was unlikely. So I came away asking myself, why the discrepancy?

I had had the benefit of thinking about this case in detail, for a few days. Those who had just heard the scenario were like doctors in the acute medical units, who are presented with a new patient’s details and required to make big decisions a few minutes later. It doesn’t feel comfortable, or right. Perhaps that was the issue. How can you make what seems like a ‘life limiting’ when you’ve only spent 10 minutes with the patient?

Or perhaps they judged that the hypothetical patient had more of a chance than I did. Perhaps, if the heart was restarted (assuming too that they would then be admitted to ITU for ongoing ventilatory support), continued antibiotics would overcome the infection and she would recover. That seemed like wishful thinking… but who would criticise a doctor for grasping at that possibility, however small?

Or perhaps, I reflected, I have developed too gloomy outlook. I am too ‘realistic’. So interested have I become in identifying futility and ensuring that patients do not undergo CPR needlessly, I am unable to recognise therapeutic opportunities anymore. How else could my opinion different from the majority so starkly?

But I know that this is not the case. I am careful always to make sure that I have not overlooked an opportunity for improvement, or cure. So is the problem me or them?

The answer can only be – neither. They are good doctors; I think I’m a good doctor. We disagree. And in this disagreement is revealed the essence of uncertainty, the unknown quantity that doctors deal with every day. If a room of individuals interested enough in resuscitation to attend a lecture cannot agree on the right course of action, how can we expect patients or their family to offer a firm opinion, or agree with our suggestions?

This point was brought up by someone in the audience. He said that we should not be surprised when families disagree with our assessments, if a group of ‘experts’ cannot be certain of what the outcome is likely to be. And faced with disagreement, we must not allow ourselves to see them as opponents in a debate whom we must win over. However sure we are of our opinion (having had the benefit of dwelling over the results of investigations, the output of prognostic models, or just plain experience), to walk into a room and bring around an anxious family to that point of view is probably naïve. The situation is being revealed to them with the same suddenness that it was revealed to the colleagues on that lecture theatre. The natural instinct is to defer judgement; to assume that there is a chance of survival that should be pursued with active treatment. Only in the most clear-cut cases, where death is visibly progressing or an underlying disease has clearly reached its culmination, can we be fully didactic.

So at the end of it all, I remain confident that I can identify patients for whom CPR would be futile, but at the same time I realise, if I had not before, that opinions will frequently differ. For both doctors and families, time is needed for the facts to be explained, for their implications to sink in, and for the resulting reaction to mature. This cannot always be done in ten minutes, or on Day 1.

***

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The dead of night

Doctor fatigue has featured heavily in the media this week. There are tragic stories of fatal car accidents, and a survey of anaesthetists has revealed that half have had accidents or near misses after night shifts.

As a consultant who works at night rarely now, I look back at the long nights and deep fatigue with a sense of achievement – I got through them without harming anyone, or myself. But the challenge, both physical and mental, was great. I will share some memories.

First night shift as a house officer in Bristol; I lay down in all my clothes, anticipating the first bleep with a mixture of excitement and fear. I thought I would never go to sleep. But nature insisted, I drifted off, and an hour later the bleep shrilled. It was 2.30AM. And oh the nausea! I leaned over, wondering whether to vomit onto the carpet tiles, suppressed the urge, gulped some water, then headed out to the wards. Ten minutes later I felt absolutely fine. I was wide awake, and ready. The first of so many awakenings.

For some it wasn’t that easy.

An SHO colleague went to do a blood gas. This involves passing a needle into the radial artery, watching the column of oxygen-rich haem rise into the syringe, then pressing down with some gauze to prevent a haematoma forming. As you press, you make conversation, or, if the patient is too ill to talk, you think of other things. This SHO fell asleep. She was found kneeling by the bed, as though in prayer, with one hand draped across the insentient patient’s abdomen, her head resting on its side by his hand.

Although we were not expected to sleep, and no provision was made for it, I quickly made the observation that as little as 45 minutes of shut-eye helped to make the next day a whole lot better. So I grabbed sleep where I could: on endoscopy trolleys (causing three months of neck pain), on couches in waiting rooms (too narrow, I fell onto the hard floor) and most controversially, on mattresses taken from unoccupied beds. Having lain down to sleep on the dusty floor of the doctors’ ward office only to come eye to eye with a cockroach, I stormed into an empty bay and dragged the thick, rubber-coated brick of foam off the bedframe.

“But that’s the MRSA bay!” called a nurse, “You can’t do that!”

“Watch me!”

During a spell in Sydney, where I worked 7 nights in a row on the ICU, I experienced strange personality changes. Generally placid, I found that fatigue led to disinhibition. In Circular Quay, waiting for a ferry to take me back to Neutral Bay after a long and sleepless night, I picked a magazine up from a kiosk and began to read it. It was 8AM. The owner of the kiosk walked around and said, “It’s not a bloody library.” His tone lit a fuse that had been dramatically shortened by the night, and I threw the magazine back at him, saying “Have it then!” That really wasn’t like me. The other personality change I noticed was emotional lability, leading to uncharacteristic crying during sentimental films; Finding Nemo, for instance.

To get through the deep trough that comes at 4AM, the time when our bodies crave sleep and threaten to shut down, I drank coffee, of course. In each hospital, I found the places where free drinks were available (hot water dispensers with large signs saying ‘PATIENTS ONLY’). As the night deepened, so did the layer of bargain granules in the plastic cups. By 4AM the ratio was close to 50:50. Once or twice, in a hurry and desperate for something to make me more alert on the way to an emergency, I poured dry granules straight into my mouth. Bitter.

The effect fatigue had on me during skilled tasks was interesting. Somehow, the importance of the situation beat the tiredness. I remember, during a long weekend (Saturday morning to Monday morning straight through, no protected sleep… followed by a routine Monday with ward round and clinic) how the corridor started to sway as I walked along it. The fluorescent tubes on the ceiling doubled up and shifted. I leaned against the wall and slapped my own cheek. It was important to be in control of my ocular muscles, because the task that awaited me was a central line insertion. This involved passing a thick needle into the vein that lies next to the carotid artery. By the time I held the needle in my latex covered fingers, sweating in the surgical gown, with a bright light shining down on the iodine-stained skin, I was all there.

The terrible stories of doctors dying in car accidents are not surprising. My methods of staying awake in the car were typical. Driving back from Kent to London, along the dreary A2, I played music at maximum volume, I bit the back of my hand until it hurt enough to squeeze adrenaline from my glands, and I hung my head out of the window, forcing my face into wind and rain like an unintelligent dog. I was lucky.

Back in my flat, the last vestiges of coordination left me, and I could be relied on to break dishes or drop glasses in the kitchen. A costly habit.

However practiced you are at jumping out of sleep into action, or pushing through the 4AM barrier, it is never easy. The body hates it, and rebels. The brain lags behind, and your true personality becomes obscured. Unfortunately, disease does not wear a watch. But however bad or long the night, the sun will rise, the windows will brighten, and your friends will appear, ready to take the problems from you.  

[Advice on fatigue from Association of Anaesthetists of Great Britain and Ireland here]

 

 

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Assisted dying – duty and conscience

 

However far Noel Conway’s legal challenge to permit a medically assisted death goes, it represents, I believe, a particularly strong wave on the rising tide of argument that will eventually overcome the status quo. Minds are changing, supportive views are being revealed.

A recent letter in The Times from Dr David Nichol, a neurologist and former opponent of assisted dying (AD), describes how a friend who received ‘exemplary palliative care’ nevertheless requested an assisted death in Belgium. In 2016 Sir Richard Thompson, immediate past-president of the Royal College of Physicians, stated his support. Well before that, Prof Sir Graeme Catto, former president of the General Medical Council, became chair of Dignity in Dying. In 2014, George Carey, former Archbishop of Canterbury, dropped his opposition to AD, saying, “The old philosophical certainties have collapsed in the face of the reality of needless suffering.”

Waves on a rising tide? Perhaps. And they make me wonder – how will the NHS respond should AD become legal?

Baroness Finlay wrote a cautionary essay with the title ‘What if ‘assisted dying’ were legalised?’ last year. This was grounded in the ‘legislative drift’ that some feel has occurred in the Netherlands, where patients with non-terminal and cognitive or mental health problems have requested death.

‘Increasing numbers of people are having euthanasia because of psychiatric illness (56 cases last year) or dementia (109 cases last year). In 2015 doctors agreed to administer euthanasia to a woman in her 20s suffering from post-traumatic stress disorder and ‘therapy resistant’ anorexia nervosa. Some Dutch campaigners want suicide drugs to be available to people who are not ill but just ‘tired of life’ ‘

Nevertheless, the latest country to legalise AD, Canada, has seen over 1300 people choose ‘medical assistance in dying’ (MAID). The divisions and uncertainties that have arisen within the medical community there are worthy of our attention. The specific areas I would like to examine are a physician’s duty to offer AD as a therapeutic option, and the morality of conscientious objection.

 

The duty to discuss

Mara Buchbinder explored the ‘physician’s duty to inform’ in a recent article, suggesting

‘…that we should not take for granted that communication about [assisted dying] ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves.’

So how and when should doctors bring up the subject, if AD were to become legal?

Otte and colleagues interviewed 23 GPs in Switzerland, and identified several factors that appeared to inhibit communication about AD. These were divided in three broad areas: concerns about personal psychological well-being, conflicting personal and religious values and perceived conflict with their understanding of the physician’s professional role. Perhaps it is an obvious comment, but if AD were to become legal, we must accept that doctors will vary greatly in the emphasis and frequency with which they mention it as an option.

I can imagine both active and passive approachs. The active approach might involve presenting AD as an option from the moment terminal disease is diagnosed. Then, later (perhaps when a certain burden of symptoms had accumulated and treatment was manifestly failing) doctors might remind patients that the option still existed.

The trouble with this approach, to me, is that we would be emphasising the ultimate futility of life-extending therapy from the very outset. It is nihilistic. However, as Roger Ladouceur noted in a personal article in the Canadian Family Physician, ‘Today is too soon and tomorrow might be too late’ – a deteriorating patient can sometimes lose the strength or mental capacity to engage in discussions once they have entered the late phase of illness. If are to be followed through, should be made when patients still have to ability to direct their care.

In contrast, a passive approach might involve patients being informed once about the possibility of AD, perhaps by letter, of in a leaflet displayed in waiting rooms (‘…on being diagnosed with a condition associated with a prognosis of less than six months, you have the right to request a medically assisted death.’) – but after that no reminders would be given. In this case, only patients with a fairly developed opinion on the subject would take things further. Patients vary greatly in the way they explore options, and for many, only those that are put on the table, explicitly, are discovered.

A pathway to a medically assisted death shown below, from Ontario, begins with an enquiry from a patient.

AD (or MAID) is, clearly, patient driven (for it to be otherwise would be absurd), but there may be parallels with DNACPR conversations here. If the issue of resuscitation is left to doctors to bring up ‘when the time seems right’, it is often not all. Just as efforts are being made to bring DNACPR within more general discussions about limits of care, and to ensure that these discussions happen early on, perhaps AD will also to be presented ‘routinely’ following certain diagnoses. There is a fine line between ensuring knowledge of, and fair access to AD, and being seen to encourage it. This ethical high wire is one that would have to be traversed.

Given these concerns, the NHS would need to develop an agreed, uniform approach. As in many other clinical areas, the details would probably be devolved to individual Trusts and CCGs. Therefore, the first thing I see happening after the legalisation of AD, is a letter from the Department of Health and NHS England requiring Trusts to develop local protocols. Presumably, within secondary care, the responsibility will fall to committees comprising palliative care consultants, oncologists, neurologists and other involved specialists. However, given that AD is usually provided outside the hospital (this bring part of its appeal), primary and community care would have to be well represented. Some will be reluctant participants –  but the details regarding access and personnel will have to be described.

Some will object and remove themselves from the process.

Some may privately determine not to mention it to their patients at all – they will be ‘conscientious objectors’.

 

Conscientious objection

In Canada, the Supreme Court has already found that blocking access to MAID is ‘unconstitutional’, thus a conscientious objector, although not compelled to take part in it personally, must not prohibit a patient’s access to it. They must provide all the necessary information if requested, and ensure an ‘effective referral’. However, there are bound to be degrees of engagement, and the debate over whether it is justifiable to object at all has been raging.

In response to a paper by Christopher Cowley  (£) defending the right of doctors to refuse referral for AD, Julian Savulescu and Udo Schuklenk wrote a pretty blistering article (free) – ‘Doctors Have No Right to Refuse Medical Assistance in Dying, Abortion or Contraception’.  They state that it is clearly wrong for an individual doctor’s beliefs to restrict access to a service that the state has determined can benefit patients, and (through the principle of distributive justice) society as a whole. They go on to suggest that doctors who are not comfortable with such treatments should be restricted themselves, in the type of medical career they choose to pursue. Parallels are made with other interventions – ‘If you don’t believe contraception or sterilisation are part of the modern practice of medicine, don’t become a GP.’ Ethical relativism, whereby we are at liberty to apply personal values to controversial issues (such as AD), is heavily criticised. We must provide what is lawful, either personally, or by effective and timely onward referral. Savulescu can be seen summarising this view in an interview within this article.

More accommodating views have been aired. Roger Trigg, although clearly in favour of a doctor’s right to object, emphasises that a spectrum of opinion must be catered for in a reasonable, liberal world,

‘Physicians and others should not be coerced into involvement of any kind in what they regard as wrong. Such coercion goes against the very principles of liberal democracy. Conscience matters. Reasonable accommodation should be given to those whose moral judgment may be at variance with prevailing professional norms’

Peter Brindley, writing in the Canadian Journal of General Internal Medicine, also urges compromise, but insists that patient welfare must at all times be paramount,

‘We believe that it is appropriate to provide some ability to opt out. As such, it is appropriate that there be flexibility within both the MAID legislation and within regulations from provincial medical colleges. However, opting out cannot mean abandoning the patient. Conscientious objection is also not an acceptable excuse to avoid any medical interventions that are complex or time consuming or poorly recompensed, or legally perilous.’

For the practicing clinician, these highly charged arguments are useful, but also bewildering. What is right? There is no absolute right, obviously, but as employees of the state (assuming UK practitioners will be working in the NHS) we would need guidance. Although we are all capable of developing our own views based on the evidence that we read, we are accustomed to seek, and be steered by, consensus opinion. We refer to guidance for everything from the management of pulmonary embolism to referral thresholds for in-vitro fertilisation. Until NICE passes its judgment on a new treatment, there is often no obligation for Trusts to provide it all. AD would require the same rigorous assessment of evidence and cost, I presume.

This is all speculation, as AD is far from legal in the UK. Perhaps it will never happen. Despite being asked the question several times, the UK parliament seems settled in its opinion that things should stay as they are. The courts however, keep asking parliament to consider what is, to many, an unsatisfactory state of affairs. If things do change, if the incremental progress made by people like Noel Conway finally tips the balance, we might benefit from rehearsing some of the arguments that Canada has had to work through.

 

***

Other blog posts on AD can be found here:

A pre-publication version of my article in Clinical Ethics, ‘From empathy to assisted dying: an argument’ can be read here.

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Keeping the options open

There are many reasons why hospital doctors can be slow to engage patients on the question of DNACPR. This is one of them.

A frail patient agrees that a DNACPR form should be put in her notes. Two weeks ago she was admitted with severe pneumonia, and survived a week in ICU on a ventilator. Although she beat the odds, it was made clear to the family that if her chest deteriorated again, she would not benefit from being taken back to ICU.

The DNACPR decision is made a few days after she arrives back on the general ward, once the receiving team have taken the measure of the situation. In the event of a cardiac arrest her pulse might well be regained several minutes into the ALS algorithm (many are, after the elephantine doses of adrenaline that are given), but she would be very unlikely survive to discharge. Indeed, based on the therapeutic ‘ceiling’ set on her discharge from ICU, the option of returning to those same life support machines that are required to bring someone out of a post-cardiac arrest situation has already been ruled out.

DNACPR is clearly appropriate. The form is written. Everyone agrees, including the patient.

Then she vomits up a bowlful of blood. It looks like it could be a stomach or duodenal ulcer. Her blood pressure drops, but improves with some rapidly infused fluid, then some packed red cells. But the blood keeps coming, and it is clear that she needs an endoscopy to confirm the diagnosis and, hopefully, treat it. She is too frail to be brought down to the endoscopy department; her breathing is shallow, her blood pressure is labile. She needs to be stabilised in ICU. A phone call is made. The ICU registrar attends the ward. She flicks through the notes,

“She’s clearly not an ICU candidate. It’s all over the notes.”

“That was written in case of a respiratory deterioration. This is different.”

“How?”

“It’s a bleed. It could be reversed. I accept that she shouldn’t receive multiple organ support, but she needs two or three days of close monitoring, perhaps a bit of vasopressor support* if her BP drops to keep the kidneys going. If the endoscopist can stop the bleeding she could be out of there in a day and back on the ward.”

“It rarely happens like that.”

“I’m not comfortable with the idea of her bleeding out here. Yes, she is frail, yes if she arrests, I accept it’s over. But there may well be a straightforward, treatable lesion there.”

The registrar withdraws to liase with her senior. He attends. He reads the notes, takes in the DNACPR form, heads in to look at the patient, and emerges from the curtained bay.

“I think we should honour the DNACPR… keep her comfortable…”

The medical consultant stares, trying hard to disguise his disgust.

“’Honour the DNACPR’! The DNACPR has nothing to do with her treatment in this situation. It is not a symbol designed to ensure instant palliative care. This is precisely why we don’t do DNACPRs when perhaps we should, because of this sort of….”

And he goes on, building up steam, accessing his frustration. In the end a compromise is reached… but the point has been made, and it is worth considering in more detail.

The question to consider here is – Do DNACPR forms materially influence a patient’s chances of being treated aggressively in the event of an emergency? On the face of it, they should not. The DNACPR is there to make it clear to whoever happens to be on the ward at the time, that the crash team should not be summoned. Death should be allowed to occur naturally. It says nothing about endoscopies, monitoring on the ICU, short term vasopressors… Moreover, every version of the DNACPR form I have seen emphasises that it is not irrevocable, it can be rescinded if circumstances change.

Yet, surely, there must be a close correlation between DNACPR status and ‘not for ICU’. The chances of surviving an ICU admission are driven by the same physiological parameters as those that determine survival after cardiac arrest. Looking at the figure below**, you can see how CPR sits at the apex of medical interventions, just above ICU.

 

Although I cannot find the studies to confirm this, in my experience, most if not all patients who are not for CPR are also not for ICU. The two go hand in hand. Therefore, by filling out a DNACPR for my patients, I am also making a statement, that he or she should not be considered for admission to ICU. But what if that is not the message I wish to convey? I can make an explanatory note; I can use a better ‘form’ (eg. ReSPECT, recently promoted in the BMJ, yet to be used nationwide). But I cannot overturn the impression that a DNACPR form makes on many colleagues, that the death of the patient should not come as a surprise, and that efforts to reverse an unexpected but life-threatening problem should not be strenuous.

‘Honour the DNACPR.’ I have heard that phrase. It is because those six initials carry so much weight, and may exclude the possibility of life-extending measures, that I, and others, are sometimes slow to start the conversations around resuscitation.

The larger point I take away from this scenario is that forms, even subtle ones like ReSPECT or other treatment escalation processes, are ill-suited to the multitude of ways in which patients can change suddenly. Although they come with the caveat that they should not be used as blanket statements, they can be read as headline summaries about how to approach patients. Different doctors will read them in different ways. To keep the options open, many doctors will choose to delay allowing those headlines to enter the notes.

 

* a powerful drug infused to keep up the blood pressure

** Taken from Dahill et al, Improving documentation of treatment escalation decisions in acute care  BMJ Qual Improv Report 2013;2

[Fictional scenario]

 

For more on the reasons why DNACPR decisions can be delayed, explore this booklet…

Batteries are low: the work of engaging in DNACPR discussions

During a talk I gave to an audience of palliative care specialists two weeks ago (St Barnabas Hospice, Worthing, thank you for having me), I wondered how they found the energy to engage patients in discussions about dying all day, every day. The comment was undoubtedly naïve, because that’s not what they do, and the many positives that come from managing dying well must recharge the batteries. But for those like me who work in the acute hospital setting, and whose job it is to recognise the approach of dying, a form of exhaustion can occur. Sometimes this leads to missed opportunities.

Imagine a typical ward round in general medicine, or even within a narrow area like my own (liver disease): there might be three new patients with clinical features to suggest that rapid deterioration could occur at any time, which on a background of chronic disease or frailty indicates that resuscitation would be futile. It is my job to start a discussion about the place of CPR and escalation of care. Three conversations. Take a deep breath.

In the ideal world, where patients with chronic disease talk about their wishes well before admission to hospital, the door would already be ajar. Perhaps a documented plan (eg. ReSPECT, described in this week’s BMJ, UFTO, or UP*) would be produced from an overnight bag, or from a relative’s pocket. This paper, a symbol of prior reflection, would allow us to compare their goals with the facts of the situation.

It’s 9.15AM. The team is full of energy and caffeine. We have X patients to see, some of whom are on the road to recovery, some of whom have already been recognised as dying, some of whom have uncertain futures.

The trainees are attentive. They are learning how to do this (aren’t we all?). First patient. I complete my assessment, pause, then open the discussion. I won’t rehearse the words here – my version is not perfect, and it varies. If it does not vary then it shows I am just repeating some learned lines – an impression that it is important to avoid. (Interestingly, a patient involved in the BMJ’s article commented, in reference to a particular form of words, it was ‘as if this is what they had all been taught to say.’)

So I open the patient’s mind to the possibility of dying (be it suddenly or gradually). Perhaps their next of kin is present. They react in their own way. A faraway look is not uncommon. Sometimes a film develops over the eyes, glistening in the morning light of the nearby window. Poetry has no place here, but as a human, I am affected by the impact of my words. We reach an understanding – we agree – CPR is not the right thing to do. If the patient or a relative disagrees, we park it, and arrange to speak about it again, later. I walk away, unsure how to close the interaction. A hand on the arm, a swish of the curtain (‘or would you like me to keep it closed?’). There is no comfortable way, to be honest.

Outside the bay we complete the DNACPR form – put the bureaucratic stamp on it, for the benefit of others who might be called to see the patient in an emergency.

“Ok. Where to next?”

We see a couple more patients. Then the registrar says, “We probably need to discuss escalation with the next one, she’s —–.” We review the history, the data, and agree, yes, we need to anticipate the worst, even if, crossing fingers, it doesn’t happen during this admission.

I use subtly different words, but move in the same direction. This time there is a more overt reaction. And a longer discussion. The thought of dying has never crossed her mind. Nor her husband’s. Part of me brims with anger – she has an incurable, gradually worsening condition, she has been seen by her GP and in specialist clinics umpteen times over the last year; why has no-one brought this up? Why does it have to be me, now? I could just leave it. She might not deteriorate after all. Why not leave it until she does… but if that is at 3AM, and a foundation year doctor is asked to see her, and she refers to a registrar who has never met the patient, there will be hurried decision making, the patient will probably not be conscious enough to express their wishes, an ICU consultant will be asked to make a call based on scanty information…  bad medicine. It must be done now.

We finish. It took half an hour. Not long in the life of the patient, relative to the magnitude of the subject under discussion. But very long in the context of a ward round. Never mind. The time must be taken.

We see some more patients.

Then we come to the third.

I enter the bed space. The visit proceeds along routine lines while I make a general assessment. Then I reach a fork in the path. Now is the time to level with them. But I am not up to it. I have left two patients in mute distress (possibly; how could it be otherwise?). I have re-formulated the words to keep them fresh and sincere and specific to them. I have struck a balance between brutal realism (I’m not one for drawing a vivid picture of CPR, but the act has to be mentioned) and sensitivity. I have asked myself, as we continued our progress along the ward, ‘am I bring too pessimistic here? If the other doctors they saw didn’t bring up dying, perhaps I shouldn’t either…’) – and I make a decision. Not today. Another day. Let’s talk about it on Wednesday. I haven’t got the energy. Or I’ll ask to the registrar to do it, she’s good.

“So are they still for resus?” asks the nurse.

“Yes.”

“What if they deteriorate?”

“We’ll cross that bridge when we come to it. Sorry.”

And so we move on, hoping that the worst doesn’t happen before we find the time and the energy – a very specific form of energy – to broach the subject.

 

 

* ReSPECT = Recommended Summary Plan for Emergency Care & Treatment; UFTO = Universal Form of Treatment Options; UP = Unwell and Potentially Deteriorating Patient Plan. According to the BMJ this week, In Torbay, where Treatment Escalation Plans were introduced to replace DNACPR forms in 2006, ‘30% of elderly patients now arrive [at the hospital] with a TEP.’

 

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