Scenarios and dialogues

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.’

 

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…

The unknown quantity

What determines if and when patients ‘turn the corner’? I have never understood.

In my world of acute-on-chronic disease, where patients suffer sudden and life threatening reverses, there are numerous stories of unexpected turnarounds. Our efforts to prognosticate accurately have led to many scoring systems, all of which have been ‘validated’, but when applied to individual patients who surprise you with twists and turns, their relevance appears diminished. However bad the numbers, we treat, we support, we try to save… unless the presentation comes at the end of a long and well recognised decline, and we (the patient, the family, the team) are thoroughly ‘signed up’ to palliation. That circumstance remains a rare one, despite the increasing value we give to conversations about death.

So we are guided by experience – that fickle teacher.

Last year a very sick patient came in. He struggled, we struggled; he responded to intensive care support, we felt satisfied that our decision to advocate for aggressive treatment was the right one. He deteriorated, we isolated the infection. We talked the family through it, and suggested that not give up yet. He fluctuated, weakening a little with each reverse, until… weeks later, he died. All that hope. All that work. The ‘numbers’, at one stage, had looked better. But that is the nature of the disease. Unexpected complications. Hidden infections. Sudden ruptures.

The grim picture joined the file of failures that I, and all doctors, compile in their memories from day 1. It is called experience. But the way such memories absorb the light colours our view of the present. That is the whole point of experience, of course; to change the way we approach similar circumstances in the future.

The shapes and lines of that patient’s clinical course remained etched in my mind when, months later, I recognised an almost identical scenario. Her liver function looked the same during the first week. Her slide into an intensive care bed occurred over similar interval. I was ‘guarded’ in my prognosis, but I knew what was going to happen here. I knew. The road home presented too many traps and potholes for her body to negotiate, given the advanced nature of her disease. Any and each of them could kill her in a few hours. As time passed, her clinical course described the usual sinusoidal curve. The downslopes were not catastrophic enough to justify withdrawal, and the upward gradients were not sufficiently sustained to launch a bid for convalescence.

We reacted to each complication with urgency. Our policy was unchanged – treat, support, save. But my heart was not really in it. I did not have hope. I know I communicated that to trainees. Those muttered opinions as we walked out of intensive care. But at no point did we hesitate or withhold. And time passed.

Until… she returned to the ward. She turned the corner. She had climbed far enough up the hill for the swirling, sucking mists of death to no longer have a hold on her. Then she went home.

A trainee asked, “You know _____? I thought you said the chances of her surviving were…” I stopped her there, and turned the case into a occasion to teach on the subject of uncertainty. 

Is it a ‘survival gene’? Poor science. Then what? We do not know. Probably, luck is involved. When such large unknowns are involved, when the rules that underlie our attempted predictions appear unfixed, pattern recognition can lead to erroneous conclusions. Sometimes it’s better just to treat, support, stand back, and try not to outthink the disease… hoping that they turn the corner.

 

See also, Patterns and pride: diary of a medical anecdote

 

 

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The gentle fiction

through_rose_tinted_glasses_by_white_rapidash-d46mvsm

‘Through rose tinted spectacles’, by monstercoach

 

This time I was going to give the hard news. That was my agenda. He had been in out of hospital a few times, his cognitive and physical status fluctuating due to the underlying condition. There was no cure. So in they came to the clinic, husband and wife, beyond middle age but not yet elderly. I got into it quickly,

“So… the last few months, I’ve noticed, you’ve got weaker every time you’ve come in. The complications have been more difficult to get over. At home… you’re not getting out…”

He said nothing. Perhaps today was an off day, mentally.

“So we need to think about the future. What should we do next time you come in. And if you get really ill, an infection, or…”

His wife shifted in her seat.

I went on, using words I have used many times. About how there was only so much we could do if he deteriorated. About the possibility of spending his last days or weeks at home, if it looked like he might be dying. About things that might happen suddenly. Uncomfortable considerations, but necessary.

“But doctor, he’s doing OK really, isn’t he?”

What? Where was this coming from? I moved by gaze from the patient to his wife. She was winking at me. A classic, conspiratorial wink. No, I would not have this….

“Well, it’s important that we are very clear, and honest, about what we have seen over the last year. It’s been a downward trend…”

“But at the moment, he’s stable isn’t he? He’s alright.”

I looked at him. He was looking at her.

“Don’t want to hear any bad news, do we?” she said.

“No. No. There’s enough to worry about in the world…” he replied, laughing quietly.

I paused. The signals were clear. This was not the time to push it. So I changed tack.

“Well,” I continued, “To be fair, you haven’t been in for two months now. The new drug we gave you for the confusion seems to be working. And…” I turned to the computer, “Looking at your numbers, your blood tests, there hasn’t been much change there either. So yes, pretty stable!” I was getting into it now. The conspiracy of optimism. He needed this –  this gentle fiction.

We wrapped things up. I had achieved nothing definite in terms of anticipating how to handle future crises. We would have to see how it went. So much for my agenda. Perhaps that was the problem, developing an agenda in isolation.

“Back in two months then?” I suggested, “Unless you have to come in earlier.”

They walked out. There would be another time. Or, more likely, the hard truths although fully understood, would remain unsaid until the very end.

 

(Details changed)

 

***

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Collected posts, Vol IV – click on image to view in Amazon

Guilt trips

guilt image

 

Two registrars talk.

 

A. A chill goes down my spine whenever I hear about a doctor going to jail. What about you?

B. For medical negligence you mean? Not for other stuff.

A. Yes. For messing up badly. The missed septic arthritis, the overlooked peritonitis, mistaken identity leading to a wrong decision…

B. You feel the chill because you know it could be you? There but for the grace of god…

A. Exactly. When I was training I made mistakes, but as long as I wasn’t wilfully stupid I always thought I was protected, by NHS indemnity.

B. Indemnity, I think, covers costs, but does not protect you from personal culpability*. You sound worried. What have you done?

A. I was just thinking. All this Duty of Candour talk has focussed my mind on medical error. I wonder when error turns to negligence, and where negligence turns to prosecution.

B. Very rarely. I can think of only three or four cases in the last ten years. That’s vanishingly rare.

A. But I mean, under Duty of Candour every avoidable, significant harm that occurs in hospital is notifiable as an incident, and in theory each of those should lead to a formal communication to the patient, or their family, that such and such has occurred, it is being investigated, and they will be informed of the outcome. With that comes an apology too, it’s integral to the process. It’s law now, the Francis report led to a new regulation. Surely then, awareness of error will rise and the most serious instances – resulting in death – will lead to medical negligence claims and, in some cases, prosecutions. It’s a natural progression isn’t it? So we need to think about it. I just don’t know what determines if we end up in the dock or not.

B. I doubt you’ll find a clean definition – but I’m not a lawyer**. It depends, probably, on how far the family want to take it. And if the act or omission was such a breach of duty that a jury would be likely to convict. Presumably the ones who have gone to jail did more than make ‘routine’ or ‘understandable’ mistakes that many of us have made or could make – the type of error that makes up the bulk of avoidable harm incidents. The juries must have concluded that their actions were so below expectation, so bad, that they crossed a line. They had to be punished.

A. But we’ve all seen bad doctors. Lazy ones, intellectually slow ones, tired ones, uncaring ones… some are found out, re-assessed, thrown out of the profession, but since when did these faults become criminal?

B. When they result in a person’s death, obviously.

A. That’s what gets me. Imagine a lawyer, or a banker, a teacher, a scientist, or a builder… what happens if they are extremely bad at their jobs?

B. They lose their jobs.

A. Right! They do not go to jail. Only if they do something clearly, wilfully criminal do they get prosecuted. By which I mean – fraud, embezzlement, assault, abuse… criminal acts that we all recognise. More than being bad at their jobs. Something else – malevolent intent.

B. Traders go to jail for losing millions, and they may not have been driven by thoughts of personal gain either. They made incompetent decisions…

A. No. More than that. They tried to cover it up. They knew they were doing something dishonest. The doctors I have read about who went to jail did not act with malign intent. They didn’t want anyone to be harmed.

B. That is reflected in their charge. Manslaughter by gross negligence. The lesser charge accounts for situations where a person’s actions are not deliberate, but are criminally ill-judged.

A. The point I’m making is only we, those working in healthcare, exist in such jeopardy. When we make a mistake people may die; when the others I mentioned make a mistake, people lose money, or get a bad year of education, or a wonky wall. They lose their jobs… we lose our freedom.

B. Not often. And that jeopardy is accounted for… in our pay, in our status.

A. Nurses too? Nurses have gone to jail.

B. Perhaps not in pay, but in respect, yes. And with that status comes responsibility, to be good at what we do. To make sure we stay good. Becoming a poor doctor cannot be tolerated, you have to recognise it is happening and self-regulate. If you don’t, but you continue to expose yourself to medical situations that are by definition full of jeopardy – for the patient – and if you mess up and someone dies, then I suppose you should be prosecuted.

A. The picture you paint is of a consistently poor doctor who fails to sort themselves out, and whose career then culminates in some sort of accident. But the cases I’ve read about are different. They involve doctors who were said to be good, or at least acceptable, but who one day made a big error. The error led to a death, the death led to a prosecution, and the prosecution led to a court case. The story was told in front of a jury, the magnitude of the single event outweighed all the good reports and testimonials, and bang – guilty! Prison. One act, one omission, on one day, leads to a verdict that tarnishes all that has gone before.

B. You’re reading it from the doctors’ point of view. That’s your big error. It’s not primarily about them. There is a victim. We are not a priesthood, immune to criticism. We’re employees with special privileges, but special duties too. You’ve got to think about it in terms of justice. What does justice require when a child dies due to the poor decisions of a doctor? More than a sacking, I would maintain.

A. Justice. Don’t confuse justice with satisfaction. And you are saying that this larger thing, justice, must have a focus, a name.

B. Yes. But that is not unique to medicine. It happens in all organisations. If a wrong has been done, someone must be seen to be accountable. The railways, construction, nuclear accidents…

A. The blame goes up in those organisations, not down to the factory floor. Because it’s the system that is often to blame. Blame rises to the people who allowed the set of circumstances to develop.

B. You can’t expect a senior manager, or the consultant in charge, or the chief exec, or the head of the NHS, or the secretary of state, to take the rap whenever a patient dies due to gross negligence. The blame has to settle on the person who did it. And usually you can identify a specific action or omission that led to a death, or to harm.

A. What if they were fatigued?

B. You would be hard pressed to show that their rota was non-compliant in this day and age.

A. So you’re saying, in effect, that it’s up to individual doctors to ensure that they do not get too tired and sloppy.

B. I guess I am.

A. And what would you advise them to do if they think they are getting too tired?

B. I… er… don’t know; do something. Get help. Escalate.

A. Remove themselves from the clinical environment?

B. If necessary, perhaps.

A. That is so naïve. Surely it would be more dangerous to walk out than to stay and do a sub-par job.

B. Agree. But I don’t buy the picture you paint of overtired doctors. None of the cases I’ve heard about have featured doctors worked unreasonable hours. It doesn’t really happen nowadays. Yes, when you and I were registrars we came in on Saturday morning and left Monday evening with no protected rest, the corridors used to sway before our eyes, the words refused to come into focus on the page… but not anymore.

A. But doing a sub-par job exposes you, and the patient, to risk. Don’t you see. Classic Catch 22.

B. If you’re tired, if there is too much going on to cope with, you should escalate. Make the call. Get your head together. Clinging on by your fingernails is not sufficient, because it’s not you that matters, it’s the lives of the patients that are going to spill out of your hands.

A. So what defence can a distracted, over-pressurised doctor make?

B. Well, perhaps this is the new world. Forget that umbrella of ‘NHS indemnity’ that we were once told about. Hearing about these doctors who have gone to jail serves to make the point. You asked me how I felt about these cases. Well I’ll tell you. They have made me afraid. You know when you’ve got something to check, some result, something to handover, some task that you still haven’t done even though it’s 6.45 and it is way past the hour when you’re due to leave in order to keep to those sacrosanct hours that should not be exceeded. When I am tempted to walk away I think about those doctors in jail. It makes me go back, and finish the job. Because any one of those jobs could, if omitted, lead to a deterioration, and a death.

A. You feel the chill like me then.

B. Yes.

A. Fear. Fear pure and simple. The cases act like a whip on your back. That’s a negative motivation.

B. So what? Sometimes we need a reminder of how important the job we do is. But you know what? It isn’t going to happen to you.

A. Why? How can you be so sure?

B. Because you asked the question. You’re conscious.

 

***

 

Comment: This piece is not about the right or wrongs of prosecuting negligent doctors, but the effect such cases have on other healthcare workers. However, implicit in the words of Dr A is the suggestion that doctors should not be sent to jail for negligence. Dr A always thought doctors were protected. I do not know why some cases come to court and some do not – probably it depends on the position taken by the family. To argue against prosecution is to argue against the law of the land, and not something I would like to attempt. I have sat on a jury in a criminal court (not a medical case, but a very serious crime) and I know that the detailed examination and subsequent deliberation are careful and thorough. If juries have found doctors guilty who are we to second guess their verdicts? The questions that this article poses are more limited – how does it make us feel, how does it change our behaviour?

Dr A responds with a sense of fear but analyses it critically. He feels that blame should not land solely on the doctors involved. There is usually a systemic failure, in his mind. Cases that have been described in the media have touched on such failures – delayed CT scans, poorly designed syringes… He feels that medicine is an exposed profession, wherein errors lead to death rather than inconvenience. Is it fair that those on the front line work with such jeopardy?

Dr B is more accepting on the inevitability of the law, she does not try to challenge the very idea of jailing doctors. And she too feels fear. In her case fear acts as a motivator when she is trying to decide whether to tie up loose ends on the ward. I think that is probably quite a common reaction. More common still, in my view, is a sense of horrified fascination that gradually, over a day or two, fades into nothing. It is too much to contemplate, too scary… so our subconscious ensures that we move on, bury it, and proceed with our fingers crossed. Hopefully, as Dr B says, the very fact that we have paused a moment to think about the ultimate sanction, that we are conscious of that risk, will guarantee that we do not fail.

 

Notes:

* This document from the NHS litigation authority describes the extent and limits of NHS indemnity. I don’t know the ins and outs of it, nor what protections it offers in Gross Negligence cases.

** The definition, on the Crown Prosecution Service website, of ‘Gross Negligence Manslaughter’ is as follows:

“This is where the death is a result of a grossly negligent (though otherwise lawful) act or omission on the part of the defendant. The law in respect of this has been clarified in the case of R v Adomako (1994) 3 All ER 79 where a four stage test for gross negligence manslaughter known as the Adomako Test was outlined by the House of Lords:

The test involves the following stages:

a) the existence of a duty of care to the deceased; b) a breach of that duty of care which; c) causes (or significantly contributes) to the death of the victim; and d) the breach should be characterised as gross negligence, and therefore a crime.”

Why did that man receive CPR? – part 3

I rang the family of the 96 year old man, Mr Simpson. I knew I was crossing a boundary, but I had gone as far as I could on the other side of the line – in the hospital, in the GP surgery. I needed to know how much of an offense that futile 6 minute exercise in attempted resuscitation was. Mr Simpson had a younger wife, aged 85, and several children, only one of whom was in the area. He, Dennis, was 65. I held my breath and called. A male voice answered – Dennis.

“Hello.”

“Hello. My name is Dr _____, I am one of the doctors who helped to look after Mr Simpson…”

“Yes.”

“I wondered if I could meet with you, and his wife. There is something about his care in the hospital that I want to discuss with you, as long as it’s not too distressing…”

“Well, we weren’t surprised that he died. He seemed very peaceful when we saw him. My mother is very sanguine about it, upset of course, but I can’t see why she wouldn’t be happy to talk…”

We made an arrangement.

A week later I sat in their lounge; Mrs Simpson, Dennis, and me.

 

Dennis: “How can we help Dr _____?”

Me: “I’ll get to the point. I don’t know if you know what happens when patients die in hospital.”

Dennis: “They go the mortuary don’t they. They are covered up and taken out of the ward…”

Me: “But before that. Have you heard about resuscitation?”

Dennis: “Yes. We’ve seen it on TV. When they try to restart the heart. Very dramatic.”

Me: “It is. Sometimes it works, and the patient comes back to life, but often it does not, especially if the patient is very frail. We tend to assume all patients should have resuscitation if their hearts stop. In fact, unless someone has specifically said it shouldn’t happen, if they die the crash team will be called as an emergency and they will start to perform resuscitation on the patient.”

Dennis: “All patients?”

Me: “Unless a ‘Not for resuscitation’ decision is made, yes.”

Mrs Simpson: “Did they do that to Arthur?”

Me: “Yes, they did. That’s why I’m here. I wasn’t very happy about it when I discovered it.”

Pause. Dennis and Mrs Simpson look at each other.

Me: “How do you feel about that, now you know?”

Mrs Simpson: “It feels very – wasteful. To think  of all those doctors running in, the machines, all the shouting and panic, and Arthur lying there. Did it hurt him?”

Me: “I don’t think so Mrs Simpson. He would have been unconscious. And when they realised that his heart was not going to restart again they stopped.”

Dennis: “After how long?”

Me: “Five or six minutes.”

Dennis: “That long?”

Mrs Simpson: “Was it wrong? Is that what you’re saying Dr ____? Is that what you are here to tell us?”

Me: “I don’t know. I want to ask you. You see, the intention of the system we have is good – to save as many patients as possible – but we can be slow at identifying patients like your husband who really shouldn’t be subjected to resuscitation. It seems wrong, it seems like a mistake, when someone like that is put through such a treatment, but because the patient has died we never know how wrong it is. Is it wrong at all, if the patient passes away and feels nothing?”

Dennis: “Of course it is. To think of him being pushed around like that. It’s not what he would have wanted at all.”

Me: “Do you know that Dennis? Did he ever say that?”

Dennis: “Not specifically. Whoever talks about resuscitation specifically? But he was plain that he didn’t want to spend lots of time in hospital. He told me he wanted to die at home – ‘like in the books’ – he said, he loved the classics. His idea was a clean sheet, a doctor popping in during the morning and leaving instructions with the family, and one of us reading something to him as he became more and more drowsy…”

Me: “That’s… a really strong image. Wow.”

Mrs Simpson: “He didn’t discuss that with me Dennis.”

Dennis: “Perhaps it’s a male thing Mum… he wasn’t one to talk about himself that much…”

Me (uncomfortable) : “Did he, or you, ever consider leaving instructions? Written instructions?”

Dennis: “No. But we should have, I see that now.”

Me: “The difficulty is, now that you know what happened to him, to work out how wrong it was to try to keep him alive. Mrs Simpson, what do you think?”

Mrs Simpson: “Until you told us, we didn’t know. We assumed he had stopped breathing and that he had just passed away on the ward. I was not surprised, even though he was not that unwell when he went in. At his age it could have happened at any time. It could happen to me at any time! His death I can accept. And now you come and – forgive me – you come and complicate it. I don’t know what to think. I trust the hospital to have given him the right and the best treatment. If you tell me it didn’t, then I am upset. I don’t know enough about it to have a strong opinion – was it right or wrong. If that is what you do in the hospital, as long as he did not suffer I am not angry. Dennis?”

Dennis: “I’m upset. His death, as I now imagine it, is the opposite of what he would have wanted. The exact, diametric opposite. So that makes me angry.”

Me: “Would you rather I hadn’t told you though?”

Dennis: “In one way, yes. We were getting along fine after his death. This has sullied our memories… but if it happened it happened, and it’s better for us to know. The only good that can come of it though is if you go back to the hospital and make sure it doesn’t happen again, to another nearly hundred year old.”

Me: “That is a real problem for us. You see, if a patient looks OK, not to unwell, and if they don’t bring the subject up, doctors don’t always raise the subject. If it is not discussed openly with the patient, or with the family, they are not allowed to make a patient ‘Not For Resuscitation’.

Mrs Simpson: “Absurd. It was obvious he wouldn’t want such a thing.”

Dennis: “But you’ve had complaints I guess. Legal cases. I’ve read about them. But surely if your doctors bring a 96 year old into hospital, they should have to raise the subject. Not to do it is just avoiding the issue. They can’t just pretend it might not happen.”

Me: “I agree with you. But it gets lost, I’m afraid. And we can’t have a rule that says over a certain age you should not have resuscitation. It has to be on a case-by-case, individual basis.”

Mrs Simpson: “Then go back, please Dr _____, and tell them, all your colleagues and students, to think about it. And to talk about it. Please.”

Me: “I will. Thank you.”

 

Part 1

Part 2

oOo

 

three covers

Why did that man receive CPR? – Part 2

In Part 1  of this imaginary inquiry I asked several doctors why a 96 year old man was subjected to two cycles of cardiopulmonary resuscitation. My search for accountability was not successful. The AMU consultant led me down a path I hadn’t explored before – into a half-lit world of philosophical uncertainty. Was it wrong, after all, to perform a violent and futile act on a patient if they felt no pain and suffered no indignity? Moreover, was that apparent violation of nature not a reasonable price to pay for the safety of others who might well benefit from resuscitation? An efficient crash team asks no questions initially – it gets on with the job on the assumption that it is appropriate. It is swift to act, and by virtue of its unquestioning approach, maximises its chances of success. A hesitant approach to life support would fail the majority who might benefit – it would not be safe.

I concluded that an inquiry limited to decisions made after the patient had entered the hospital was bound to fail. So I rang the GP, Doctor K – the doctor who, I assumed, knew the patient better than anybody else. He asked me to drop in to the surgery. I sensed that he was feeling defensive about it. It went like this…

 

Dr K: So you want to know why I never discussed resuscitation with him?

Me: I am interested, in your view. I don’t see what you do on a day-to-day basis.

Dr K: The problem is… I hadn’t seen this man for 6 months.

Me: What did you need to see him for?

Dr K: A chest infection. We managed to keep him out of hospital. That was the last thing he wanted.

Me: That’s interesting.

Dr K: What is?

Me: That you picked up on his general wishes… his goals, as Atul Gawande would say. He gave you an insight into his attitude towards hospitalisation. He had thought about it.

Dr K: Of course. It came up in the discussion.  I said if he wasn’t feeling better in 48 hours he’d probably need to be admitted.

Me: And yet… you did not take the conversation further. You did not open it up to a discussion about end of life care.

Dr K: He wasn’t that ill!

Me: But he became ill, 6 months later. With the same problem. And he died, albeit unexpectedly. When he saw he was 95.

Dr K: He walked in with his shopping! He walked out with a prescription for penicillin.

Me: Yet 6 months later not only was he admitted to hospital, he was subjected to a form of treatment that he almost certainly would have rejected if given the opportunity to consider it. As you know, we in the hospital did not cover ourselves with glory by failing to start that conversation, yet there was an earlier opportunity, with you.

Dr K: You’re asking me to start end of life discussions with every patient in their nineties?

Me: Not based on age. General physical fitness. Reserve. Survivability.

Dr K: You say that, but I have told you that when I last saw him he looked OK. It’s his age that you focussed on. 95 when I saw him. You cannot believe that any 95 or 96 year old would have a good outcome from CPR – that’s my reading of what you’re saying.

Me: Probably not, but setting an age threshold above which a discussion about CPR should happen does isn’t feasible.

Dr K: So help me. What threshold should I use. End-stage organ disease, lungs, heart, liver – easy. Terminal cancer – straightforward. Nursing home resident, completely physically dependent on others – yes, I can do that. Previous severe illness or ICU admission, unlikely to survive another – yes, possibly, I can note that and be reminded to start a conversation. A bit frail looking, commensurate with living into one’s tenth decade – not easy at all. How do I start it? ‘Have you thought about what might happen if…’ Easy words, but they wouldn’t be relevant to the problem they came to see me about in the first place. It would shock them. It might undermine their confidence in me. It’s not my role to continually remind people of their mortality. I don’t have the emotional  capacity to do that. You see? The same arguments apply to me, and to my colleagues here in the surgery, as to your colleagues in the hospital. We are human.

Me: Can you imagine a situation where you would have that conversation with a patient who did not have an obvious life-limiting condition.

Dr K: If they raised it, yes. And if I had a bad feeling about them, yes.

Me: A ‘bad feeling’. What is that?

Dr K: A gradual decline, a move into care… a change.

Me: And the 96, sorry, 95 year old –  you didn’t have a ‘bad feeling’ about him?

Dr K:  No. Things are unpredictable aren’t they. But can I expected to anticipate and plan for the worst case scenario every time? I can’t. You know something – this inquiry, this interrogation, is focussed entirely on what happened during a series of short interaction with doctors. I think you should look elsewhere.

Me: But I thought you of all people…

Dr K: You though I would know everything about him, as his GP. It’s not like that. He was always quite well, there was no reason for us to have built up a close relationship. The odd thing, but no chronic condition, no depression, no reason

Me: Where do you suggest I look?

Dr K: At him. At Mr Simpson. His family. That’s where the truth probably lies, don’t you think? That’s where he lived his life – around his family. Not around me.

 

Coming soon – Part 3, the family

See Part 1 here

oOo

Why did that man receive CPR? – an imaginary inquiry

Reviewing the notes of a frail 90-something patient who had undergone an unsuccessful resuscitation attempt, I imagined touring the hospital and asking each doctor involved in his care why they had not thought to make a DNACPR decision. It went like this…

 

The Emergency Department SHO:

‘We don’t really think about DNR decisions unless they are clearly deteriorating or unstable in the department. Or established palliative care patients. I was only with him for fifteen minutes, it was a pretty mild chest infection, CURB 1… I think the medical team would usually get into that.’

 

The clerking medical SHO:

‘It was a busy one. And he wasn’t that bad. I mean, there isn’t time to go into it unless the patient is obviously unstable… And don’t the guidelines say you only need to do it if there is a risk of cardiac arrest? I didn’t think he was at risk.’

Me: ‘But people this old can arrest any time, without warning, don’t you think?’

‘They might. But if they’re not that unwell – and he wasn’t, I remember him – it’s not what they’re expecting is it. You can’t go into a cubicle while a man is having a cup of tea, getting ready to go to the ward, and start talking about death! Well you can, but it’s a bit of a jump.’

Me: ‘But he arrested, didn’t he?’

‘Unexpectedly.’

Me: ‘By definition. If it’s expected they just call it dying.’

‘So you think I should have asked him?’

Me: ‘It would have been appropriate, to bring it up. He was 96, he was being admitted as an emergency… even if you did grade it as a ‘mild’ chest infection.’

‘Well what about the consultant? He was seen by the consultant. Didn’t she bring it up?’

 

The consultant on the post-take ward round

Me: ‘Can I have a minute?’

‘Of course.’

Me: ‘It’s about that chap, Mr Simpson. 96. He arrested on the Acute Medical Unit last week and was still for resuscitation. They gave him two cycles.’

‘Oh.’

Me: ‘I wondered, if you had a chance to consider making him DNAR on the ward round?’

‘It crossed my mind. But he looked very well. I estimated he’d be out in 48 hours. That’s a shame…’

Me: ‘It crossed your mind. What stopped you from discussing it?’

‘Time. Circumstance. It just didn’t seem relevant. And – I remember now – he’d woken up rather confused. That was a change, according to how the notes described him the day before. He wasn’t up to having a sensible discussion.’

Me: ‘Were the family there?’

‘No. Definitely not.’

Me: ‘So he had deteriorated.’

‘Barely. Look, I would have had to have the family there if I wanted to make him DNACPR. He wouldn’t have been able to focus on the discussion. And to be honest, it didn’t seem like a situation where I needed to do that. He wasn’t that bad. Would you? Would you have signed the form in case he did arrest?’

Me: ‘I might have asked him… tested his mental capacity. He might have looked up and said ‘No way. That’s not what I want. I don’t want to be resuscitated.’ He might have made it easy for you.’

‘Perhaps. But it’s not always as straightforward as that, is it? He might have got upset.’

Me: ‘Death, or the thought of death, is upsetting. We can’t escape that.’

‘Well I didn’t think it was an occasion deserving of upset. In retrospect, I agree, he shouldn’t have been resuscitated, obviously. I’m not averse to asking patients, but this time… I just didn’t.’

 

The crash team registrar:

‘He looked dead. But they were already doing basic life support, and the nurse had brought over the resus trolley. I knew nothing about him. We started the algorithm, obviously.’

Me: ‘Obviously?’

‘Well that’s what we do, isn’t it. You have to start. We arrive completely in the dark. I asked for the notes as I recognised that he was frail, very old and frail. There was no DNR in the notes, so we carried on… until it was obvious he wasn’t coming back. Why, don’t you think we  should have started?’

Me: ‘No, no, I’m not saying that. You have to don’t you.’

‘I knew it was inappropriate though. He should have been ‘not for’. I didn’t feel good, looking at him afterwards. He was very thin, I know we broke something.’

Me: ‘Don’t blame yourself.’

 

Later… the AMU consultant catches me in the corridor:

‘I was thinking, about the premise of your questions. From a philosophical point of view. What is the problem with that man being subjected to a resuscitation attempt?’

Me: ‘It’s cruel. It’s violent and undignified. And useless.’

‘But is it cruel?’

Me: ‘We’ve all seen it. How can it be justified if a man is nearly a 100 years old and cannot realistically survive the attempt.’

‘Ah! That’s futility, not cruelty. You see, he was unconscious. He was dead.’

Me: ‘By definition…’

‘… and unfeeling. He was not hurt.’

Me: ‘And what of dignity?’

‘We, the hospital, treated him as we would anybody else. Without discrimination or favour. At no point did he tell us he didn’t want it.’

Me: ‘He didn’t have a chance to express that.’

‘No, but I’ve spoken to a lot of people in their 90’s about resuscitation, and many – most – have never even thought about it. It’s not an issue for them.’

Me: ‘Until it happens.’

‘And when it does, they don’t feel it, you see! They are unconscious.’

Me: ‘Until we get them back. And then they are condemned to a grim few days in hospital, dying slowly. The statistics confirm it, for the vast majority.’

‘If we do get them back and they are clearly not going to bounce out of hospital we look after them and palliate them. We recognise what is happening and do not persevere with disproportionate levels of care. So give us a break! It’s not always a crime to try to resuscitate someone who in retrospect didn’t really have a chance. I respect what you’re saying, but we don’t need an inquiry.’

 

I shuffled off. Point taken. But that’s the beauty of imaginary conversations. No offense given or received.

 

three covers

ABCDE…X – hierarchy and lost opportunities

The accumulated knowledge within a typical medical ‘firm’ is great, but the way a typical firm functions may not allow much of that knowledge to see the light of day. If all the decisions made by that peculiar monster originate from its ‘head’  – the consultant – opportunities can be lost.

The situations described below are based on examples that I have observed or been part of. The contrast between them serves as a lesson.

I have described the symptoms and signs in generic terms such as A, B and C, with a diagnosis X, because I do not wish to describe the specifics. The educational value of the piece might be greater if I had stuck to reality, but in this case I wished to avoid giving medical details.

oOo

The patient presented on day 1 with symptom A. The admitting doctors didn’t have a clue what the diagnosis was. The patient was transferred to my ward. I saw her on day 2, and an investigation showed abnormality B. A and B did not connect in my mind – the diagnosis was still not clear. I dictated a broad differential diagnosis centred on common and not so common conditions, and I gave instructions that various investigations should be arranged to narrow it down. Time was short; we moved on.

On day 3 I was told that the patient was reporting symptom C, and that the patient was worse. I went to see her, and detected sign D.

A, B, C and D. It still didn’t make sense. A strange collection of symptoms, signs and findings. The Foundation Year doctor I was with looked worried, because the family had been asking why their mother was not improving. The SHO came onto the ward. I asked about the results of the investigations that had been requested, and rather embarrassedly the two trainees told me that only three of them had been completed. Others were ‘in the system’.

We had a conversation about how to prioritise tests and persuade radiologists…we talked about getting the most out of the system. We didn’t talk about the patient. The differential diagnosis remained unmodified. The juniors set off to do their best.

On day 4 I saw her again. She had deteriorated further. We waited for some more results. Overnight she was seen by the on-call team, as she had suddenly begun to display a florid example of sign E. The new, crucial development completed the picture and led to a new diagnosis. A specialist opinion was requested first thing, and when I saw that specialist in the corridor during the day she told me about the ‘classic features’ of disease X. But it was probably too late now. The patient was on the way to intensive care.

I looked up disease X on the computer and saw how, in this condition that I had not personally encountered before (but one I had read about during my studied) symptom A – accompanied by abnormality B – proceeds to symptom C, followed a day or two later by sign D, and in latter stages evolves into sign E… by which time the disease has often progressed too far to be salvaged.

Another day, another way…

The patient presented with symptom A. The admitting team did not know what cause was, but they had a few ideas. On the next ward round an abnormality in laboratory parameter B was noted, but it still didn’t add up to anything in particular. Various tests were requested, and a referral made to specialist M (mainly because they were used to seeing patients with multi-system, i.e. frequently baffling, disorders).

The patient did not do well on the initial treatment regimen, and on day 3 was seen again by the consultant. This time the patient described symptom C. The junior doctors stood at the end of the bed looking worried, still uncomfortable when faced with deteriorating patients due to unexplained disease. Time was pressing, there are many more patients to see. Further investigations came to mind, but they were not guided by an idea. It was diagnosis by ‘shotgun’  – multiple simultaneous tests arranged in the hope that one of them hit something.

The consultant worried that he didn’t know what was going on, but reassured himself that all of the sensible things were being done. The team moved away from the bed. Then the consultant turned around, and took them to one side.

“What do you think?” he asked of them.

“What do you mean?”

“Well what do you make of these symptoms, these abnormalities. Do they ring any bells with you?”

“Er…not really.”

“Well have you seen a patient with anything like this before? Anything similar? Anything!?”

“A couple, but nothing that really looks like this. There was one case…”

“Tell me about it!”

“He didn’t behave like this. The patient was much younger. But they went on to develop symptom E, and I remember they went to intensive care. I was a student then. It was, I can’t remember the diagnosis, something to do with…system Y.”

The consultant paused. That category of disease had not crossed his mind. Could it be that? Could it be?

He went to the computer. A bell began to ring faintly in his mind. Something from the early days of his training. He googled (everbody does) the system mentioned, and added symptom A. He clicked on a link to Pubmed. And there it was. Disease X, a severe manifestation of system Y dysfunction. It starts with symptom A, is associated with abnormalities in parameter B, often leads to symptom C, usually progresses to display sign D, and at that stage you have to give treatment Z before sign E kicks in. Could it be that?

“Let’s get the specialist. It’s a small chance, but if it is that she needs treatment today.”

oOo

On the face of it these examples demonstrate something simple. If you spend time reflecting on a difficult diagnosis and keep an open mind to new data you might happen upon something that pushes you in the right direction. Don’t commit yourself to the initial plan, don’t be wedded to the first thought. That’s just good medicine.

But there is also a lesson about leadership on the ward.

As one progresses through a medical career one’s breadth of view contracts. Most hospital consultants are also specialists in something, and the demands of the specialty can leave little room for refreshing one’s knowledge of the rare and exotic. However,  the temptation to allow the consultant to embody the entire experience and expertise of the team is great. Junior doctors are meek, especially early on in the training, and will not readily challenge the differential diagnoses or management plans put forward by the consultant. Often (always!) they will be having independent thoughts as to what might be going on with the patient, but only a proportion of those thoughts will be voiced. Bits of knowledge, recollections, ringing bells from their own experience are ignored or put to one side as the momentum of the consultant’s diagnosis generating, management planning juggernaut rolls on. If they are clearly in a hurry, they are even less likely to be slowed down or interrupted by a trainee.

Sometimes the hierarchy needs to be flattened, albeit temporarily, to allow the views of each team member to be aired and enlarged upon. It’s not a revolutionary concept, but in hospital medicine, which remains hierarchical by virtue of the need to remain highly efficient in a continuously pressurised environment, the luxury of slowing down and allowing new ideas to germinate can be lost.

oOo

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His burden

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I knew George would be the first to ask. He had heard about his diagnosis a week before the vote, and although he had never raised the subject with me (there was no need), I just knew he’d be the one. Metastatic oesophageal cancer. 78 years of age, but ‘biologically’ 65 – busy, reluctantly retired – until disease began to excavate the contours above his strong jaw.

I prepared myself for his questions as I drove to the house. In fact I prepared my defences. Never a great supporter of Falconer’s Bill, I recognised my duty to engage in the process of Assisted Dying if that was what my patients wished. I had already decided that I would not be one to wash my hands of it, to pass it on to more willing colleagues. If it was legal, if it was right – for my patients – I would sign the papers. But not today…I didn’t want to commit to such a process today.

He met me at the door. The ostensible reason for my visit was to assess him for chest pain that had come on overnight. The tumour had been stented ten days earlier, and I had told him to expect some discomfort. He was feeling better already, he quickly informed me. I set myself for a quick turnaround but he ushered me to the visitors’ chair. Then he got to the point.

“Paul,” (he had always used my first name) “I want to ask you something.”

“Go ahead.” And I knew.

“This assisted dying law. Will you promise to support me, if I choose it?”

“Well George, it’s only just been voted through, there’s a long way to go. I haven’t looked into all the details yet…”

“It sounds simple enough to me, you must know the criteria. Terminal diagnosis – yes. Less than a year – yes. Settled opinion – absolutely, I was settled on it even before I got cancer. And two doctors.”

“You seem to have decided very quickly George. You’re alright at the moment, aren’t you? Swallowing better. A bit of liquid morphine.”

“It’s knowing Paul. Knowing before it gets hold of me. I don’t want to start all this when I can barely get about, or barely talk for that matter.  It’s a high tumour, it might even touch my windpipe, the chap at the hospital said. That’s if the liver doesn’t get me first.”

“Perhaps I should record your opinion, put it in the notes, and wait…see how it goes.”

“It will not go well Paul. It is naïve to expect a good death.”

“Why? The hospice have already been in touch. You’re visiting next week. They’re great there. I go myself every other week to see patients.”

“I know. But I want to die before my symptoms are bad enough to require a hospice. They are reactive.”

“I’m not sure they would agree.”

“No disrespect, but they are. When I get bad they will put me on the list, when I feel awful they will increase the doses. By dying at the time of my choosing I avoid a trial of symptoms. I am dying already, look at me. But now I can control the timing…with your help.”

“Control. Isn’t that the point George? You don’t want to lose control.”

“Precisely. So what?”

“Is that a strong enough reason to ask me help you die?”

“Ah, Paul! I do worry about your feelings in this, but not quite enough to stop me asking. You’ll get over it.”

“But I need to be sure that I am assisting your death for the right reasons George. These…existential motives, you might call them, I’m not sure they are what the Lords had in mind when they passed the Bill.”

“I don’t think they were trying to cater for specific symptoms Paul. My distress is loss of control and autonomy, it is seeing those around me grieve while I still live, it is the determined stoicism in Lucy’s eyes that I don’t want to witness for longer than I have to.”

“You worry about Lucy?”

“Of course! It’s a huge burden on her. Huge. Physically, mentally.”

“That is a problem for me George. I cannot support assisting your death if it is primarily to relieve the suffering of another. It’s too…unclear, too…complicated.”

“We are complex Paul, the dying. We are at our most complex before the actual dying has commenced, but after we have been made aware that it is coming. There is no great clarity in my mind, let me tell you, except over this one point.”

“But George, it’s got to be in the context of unendurable pain and suffering. If you remain comfortable I, we, will not find a second doctor who is willing to sign the papers…”

“Aren’t pain and suffering subjective? It’s for me to say when they are or aren’t so bad. Not for you to tell me. And part of my pain is my family’s pain, and the thought of their increasing pain as I am increasingly diminished. You can’t isolate a dying man’s symptoms from their family. Lucy will be with me, and she has told me it is also what she wants.”

“I’m sorry George. Perhaps it’s too soon for me, as a doctor.”

“I understand that. But you will come back to talk about it again? Won’t you? You’re not turning away?”

“Of course I’m not. Let me think about it.”

 

oOo

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