Author: philaberry

Reputations: the light and the dark

‘Light in the darkness’ by Pat Cegan

 

A recent thread on Twitter brought up a subject that is really spoken about. Elin Roddy kicked it off with a comment that patients admitted to nursing homes should routinely be engaged in conversation about their preferences towards end of life. With habitual frankness, she later commented that there is a danger that those working in hospitals who are more willing and able to do this, run the risk of gaining a ‘reputation’. Others confirmed that they had indeed become known in their Trusts as being prepared to discuss resuscitation and sign DNACPR forms.

This is something that has bothered me for a long time, being one of the self-acclaimed “willing”. What if a doctor acquires a reputation as being comfortable with the fact that their patients might die? Might that realism be construed as nihilism? Might they come to be regarded less as a saver of life, but rather an usher into the next? Uncomfortable!

Doctors lie on a spectrum. Some cannot bring themselves to consider the possibility of death, and continue to propose active treatment even when the patient does not seem to be responding. Others readily identify signs and symptoms indicating that life expectancy is limited, and are prompted to initiate a (sometimes) difficult discussion about end of life care. Some move across different points on the spectrum, but it is quite possible that they feel at home near one end or other.

If a doctor actively seeks the signs of imminent dying in the belief that they will save patients the burden of futile treatment, there is a theoretical danger that they will fail to recognise opportunities for saving them. A doctor on the other end of the spectrum may identify ‘survivors’, and during their career may be credited with helping to save patients that others would have ‘given up’ on. However, in doing so they will probably push more patients through periods of aggressive and ultimately futile treatment. How many ‘failures’ it takes to justify one ‘success’? This sounds like an overly cold and impersonal way of looking at things, but it is a justifiable metric. In my recent paper on DNACPR decisions, I cited a study by Paniagua et al, who found that ‘29 octogenarian patients with cardiac arrest have to be treated with CPR to net one long-term survivor’. That ratio doesn’t look good.

As a patient, do you want your doctor to be the one who looks for any chance to cure, or who accepts that death is sometimes inevitable and changes their approach swiftly if things are not going well?

Of course, it all depends on clinical context, and on your wishes. However, in the 8th and 9th decades, when physical frailty is significant, comorbidities sometimes numerous, and mental capacity variable, the assessment very much depends on the doctor’s perception. Their instinctive position on the aforementioned spectrum may make a big difference.

They may be influenced by the type of patients they tend to see; their case-mix. A palliative care doctor will spend his or her days looking out for signs of terminal deterioration, and (almost by definition) will not be looking for opportunities to commence heroic new treatments. The elderly care physician will try to balance the burden of curative or preventative treatment against the realistic benefits. In my specialty, hepatology, I see patients in their third and fourth decade who look as though they are going to die in the next week or two (usually from multiple organ failure as a complication of cirrhosis). But, being young, they might pull through if we keep supporting them in the ICU. The reward, survival, seems to justify any cost – long weeks in ICU, months convalescing. But the price (not mine, the patient’s) to pay for failing to recognize that organ support is not working, and carrying on with fingers crossed just in case there’s a ‘turnaround’, is a prolonged death attached to multiple life-support machines.

Negotiating optimism and pessimism in these situations is difficult, and as I described in a recent case report, fluctuations in clinical condition that result in changes of tack on the part of the medical team can result in what looks, in retrospect, like vacillation. This goes to show that few of us are comfortable in diagnosing dying, and, especially in younger patients, will always choose life-prolonging/saving treatment if there is a chance, however small, that it will work.

There are other, perhaps less noble, drivers to continuing with aggressive treatment in the face of apparent futility. Perhaps a patient’s management is being led by another consultant or team, and it does not feel right or comfortable challenging their decision. Perhaps the underlying disease is well outside my expertise, and I do not feel confident commenting on the likely disease trajectory. Perhaps the team treating a patient are known to be therapeutically aggressive, and are bound to take suggestions that they should rationalize treatment badly. Perhaps I have seen too many patients die recently, and just want a good news story…

In my view, as a doctor who is generally comfortable and accustomed to recognizing futility, we must be careful not to lose the ability to see glimmers of hope, even if those glimmers are not apparent until the murky surface presented by illness is scratched away by a period of active, optimistic treatment. As long as we are able to admit defeat when things are going wrong, and brave enough to explain that to our patients or their families, it seems reasonable to sit on the optimistic end of the spectrum most of the time.

In this way we might witness recovery against the odds, feel good about, and use those cases to motivate and enthuse our teams. At the same time, there is no harm in being known as a realist who can identify the signs futility when they begin to accumulate, and who is willing to change direction even if that means pushing against the prevailing wind.

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An illustrated history of truth in medicine

Who isn’t completely honest with patients?

Memorial Medical Centre after Hurricane Katrina, New Oleans

Some years after Hurricane Katrina (2005), I read an excellent book, Five Days at Memorial by Sheri Fink, about the alleged actions of medical staff who looked after patients in the flood-stricken Memorial Medical Centre. They were accused of administering sedatives and opiates with the intention of hastening death, i.e. committing euthanasia. Immobile, comorbid and very dependent patients in the Lifecare facility stood no chance of being evacuated via the helipad, and as conditions deteriorated in the heat, they began to suffer. The details and follow up to this investigation can be read here.

 

Emmett Everett, died in MMC and found to have non-prescribed sedatives on board at post-mortem

This was about more than words, obviously, but the scenario of doctors administering drugs without their patient’s knowledge, ‘for their own good’, led me to investigate the history of truth in medicine. I spoke on the subject to a meeting of the West Kent Medico-Chirurgical Society, and this essay is based on that talk.

 

Route to the helipad, MMC

 

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We start with an ancient story: Arria, a Roman woman, regularly visited her husband, Caecina Paetus, who had been imprisoned by the emperor Claudius. During this period, their sick son died and was buried, but Arria chose to hide this information from her husband – to spare him the pain. Pliny wrote that when she felt the sadness begin to overcome her in his presence, she took herself away so as not to reveal the truth.

 

Arria and Paetus. Later, he was ordered to kill himself by Claudius, but could not do it. So Arria took the knife, stabbed herself, cried ‘Paetus, it does not hurt’, and died. He then carried out Claudius’ sentence on himself.

 

An early example of deception for the (perceived) good of another. And a behaviour that may be relevant to doctors and nurses who sometimes know a great deal more about the details of their patients’ condition, and their likely fate, than their patients do.

 

Antiquity to industrial revolution

Hippocrates

The fathers of medicine saw a place for withholding truth. In the ‘Decorum’, dubiously attributed to Hippocrates [460-370BC], it is written,

Perform your medical duties calmly and adroitly, concealing most things from the patient while you are attending him.

 

Galen

 

Galen [130-210AD] described ‘δειλός’, the state of fear and anxiety about ones health that should be avoided as much as possible.

Arnald de Villanova [1240-1311], a Spanish physician, stated,

Arnald de Villanova

Promise health to the patient who is hanging on your lips,

but once you have left him say some words to the members

of the household to the effect that he is very ill;

then if he recovers you will be praised more…

 

Page from ‘Chirurgia’

And the famous surgeon Henri de Mondeville [1260-1320] wrote, in his treatise ‘Chirurgia’,

He should promise a cure to all his patients, but not conceal the danger of the case, if there is any, from the family and friends…

 

 

500 years later however, the words of Samuel Johnson [1709-1784] were reported by Boswell,

Clearly he supported full disclosure, mainly due to personal experience.

 

Thomas Percival

Manchester cotton factory

In the early 19th century Dr Thomas Percival was asked to help settle a dispute between apothecaries, physicians and surgeons at the Manchester Royal Infirmary. Percival had done great work in analysing bills of mortality and improving working conditions in the cotton mills.

In 1803 he published ‘Medical Ethics, or a code of institutes and precepts adapted to the professional conduct of physicians and surgeons’. Appearing to err on the side of protective optimism rather than painful honesty, he wrote,

‘A physician should not be forward to make gloomy prognostications, because they savor of empiricism… the physician should be the minister of hope… It is, therefore, a sacred duty to guard himself carefully in this respectm and to avoid all things which have a tendency to discourage the patients and depress his spirits.’

 

Manchester Royal Infirmary, opened 1755

 

A little later, 1849, the American physician Worthington Hooker [1806-1867] wrote ‘Physician and Patient, or, a practical view of mutual duties, relations and interests of the medical profession and the community’. In Chapter XVII, titled ‘Truth in our intercourse with the sick’, he writes,

 

Worthington Hooker

 First, It is erroneously assumed by those who advocate deception, that the knowledge to be concealed…would be injurious

Secondly, it is erroneously assumed that concealment can always… be effectively carried out.

Percival’s Medical Ethics

Thirdly, if the deception be discovered or suspected, the effect upon the patient is much worse…

Fourthly, the destruction of confidence… [has] injurious consequences to the persons deceived

Even though Hook was beginning to challenge the tendency to conceal, individuals assumed that deception was an intrinsic medical skill well into the 20th century, as this 1927 quote  from Collins demonstrates,

‘the longer I practice medicine, the more I am convinced that every physician should cultivate lying as a fine art’

 

 

Nuremberg and autonomy

By the mid-20th Century, everything had changed. Under the Nazi’s, medicine was consumed by evil. Dr Karl Brandt [1904-1948], Hitler’s “Escort Physician” and latterly Commissioner of Sanitation and Health, oversaw a systematic euthanasia programme, and  widespread medical experimentation. Looking at his fresh face at a gathering of the elite in Berchestgaden, it is still difficult to understand how doctors such as he, trained to heal, could have drifted so far into the moral swamp. He was tried at Nuremberg and hung at the age 44 (having previously been sentenced to death by the Nazis for helping his family escape from Berlin to surrender before the city was overrun).

Nuremberg

 

Karl Brandt, on trial and in his pomp

 

From Nuremberg emerged principles, the Nuremberg Code, that guide us today. These include, as regards medical interventions,

  • The voluntary consent of the human subject is absolutely essential…
  • …exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion…
  • should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him/her to make an understanding and enlightened decision.

 

The last one is key. For consent to be valid, the person, or patient, must know everything. Consent, in this context, is a corollary of autonomy, probably the stoutest pillar in the ethical framework that doctors refer to on a day to day basis. Tom Beauchamp and James Childress, working in Healy Hall, Georgetown University, Washington, wrote Principles Of Biomedical Ethics, containing the now familiar touchstones:

Autonomy – The right for an individual to make his or her own choice.

Beneficence – The principle of acting with the best interest of the other in mind.

Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.

Justice – A concept that emphasizes fairness and equality among individuals.

 

 

Two judgments

Respect for autonomy requires full disclosure of the relevant facts, so that patients can make an informed decision. This seems simple. Yet, even today, we sometimes struggle with it.

The case of Janet Tracey, about which I have written on this blog before, is an example. A doctor issued a DNACPR notice without, in the opinion of the judge, offering in a meaningful way to discuss it with her.

He said,

“On occasions when I attempted to initiate discussions with Mrs Tracey regarding her treatment and her future she did not want to discuss these issues with me.”

 

The Tracey family outside the High Court

 

The argument, that in this case it would have been cruel to press her to discuss the subject, did not wash. In fact the judge doubted that the doctor had tried as hard as he said.

‘In the absence of any documentation and in the light of what is known about Mrs Tracey’s view on the issue of resuscitation around the time of the first Notice, I am unable to accept Dr ______’s evidence that he spoke to Mrs Tracey about resuscitation prior to the implementation of the first DNACPR Notice.’

And in his summary, the judge said,

‘It may well be that such a concern also caused him to spare her a conversation which he knew was likely to cause distress to a suffering patient.’

‘…doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them.’

So, the opinions of those wise men who favoured concealment of harsh truths have been challenged, and overcome. Now, especially towards the end of life or the context of surgical procedures, it is clear that full disclosure is required. To do otherwise is rarely justified.

 

Sam and Nadine Montgomery

 

The Montgomery case has further nuanced our approach to providing information. Nadine Montgomery agreed to a vaginal delivery, even though her baby was large compared to the mother (who was diabetic, a risk factor for having larger babies). The baby became stuck in the birth canal and suffered a brain injury. The Supreme Court found that the risks of vaginal delivery in this particular case had not been explained adequately, and that if they had Ms Montgomery would definitely have opted for a Caesarean section.

The judgment, which is fascinating to read, includes a critical reference to the Bolam case, which was one of  the precedents on which consent use to rely. Under Bolam, doctors had to say as much as a group of peers in similar circumstances would generally have said (this always seemed quite a circular argument to me).

Furthermore, because the extent to which a doctor may be inclined to discuss risks with a patient is not determined by medical learning or experience, the application of the Bolam test to this question is liable to result in the sanctioning of differences in practice which are attributable not to divergent schools of thought in medical science, but merely to divergent attitudes among doctors as to the degree of respect owed to their patients.

The judge then emphasises the need to tailor the information they give to the individual,

This role will only be performed effectively if the information provided is comprehensible. The doctor’s duty is not therefore fulfilled by bombarding the patient with technical information which she cannot reasonably be expected to grasp, let alone by routinely demanding her signature on a consent form.

Many say that good doctors have been discussing risks with their patients like this for years anyway, and now the ‘law has caught up’. But we can see how a tendency to paternalism, to partial transparency, has grown from the historical instinct to withold information. There may still be exceptions. In emergency scenarios, where the patient is vulnerable, or cannot focus on the facts, and decisions must be taken, doctors are quick to fall back on ‘best interest’ thinking. This requires an objective assessment of what is best, and a rapid discussion within the team (often led by the clinician, who will tend to drive the direction of travel). As the figure below illustrates, with increasing urgency the amount of information, and therefore the degree of autonomy permitted, may reduce.

 

 

These situations place a great power, and burden, in the hands of decision makers. It is essential that outside these ‘lifesaving’ situations, clinicians revert back to the habit of sharing information, and ensuring consent is truly informed. As we know from the good Dr Hooker’s third observation on the matter of truth – ‘if the deception be discovered or suspected, the effect upon the patient is much worse…’. Nowadays, that effect will result in more than suffering for the patient, but a professional or legal challenge to the doctor in question.

 

 

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Picture credits:

Route to the helipad – diagram of hospital taken from ‘5 days at memorial’

Tracey family, copyright Roland Hoskins

Emmett Everett – from CNN interactive website

Others – commons license

 

Further reading:

I became interested in this subject, having found myself ‘spinning’ prognostic estimates in the intensive care unit, whether consciously or unconsciously, while speaking to relatives about the best way forward. In a paper, ‘Sophistry and circumstance at the end of life’ (Pubmed abstract), I explored language choices made during these discussions. For instance, a 95% chance of dying sounds bad, and seems to meet the standard for futility; but choose to present that as ‘a 1 in 20 chance of survival’, and it doesn’t sound so hopeless. Doctors may use language differently according to their therapeutic agenda.

In a second paper, ‘The witholding of truth when counselling relatives of the critically ill: a rational defence’ (PDF), I reviewed some literature on the subject of truth-telling, and explored how being less than frank about poor prognosis can sometimes be justified.

The literature regarding truth in medicine is extensive, and this paper by Catriona Cox and Zoe Fritz is a good introduction with many helpful references.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In my day

Reading about the situation at Derriford hospital, where two doctors found themselves responsible for over 400 people, I thought about my own training in the 1990s. Before you slap the computer shut or throw down the phone, I should say that although there is a fair amount of ‘in my day’ reflection here, it is not my intention to promote a ‘just get on with it’ attitude.

Back in the 90’s few if any junior doctors thought about challenging potentially dangerous staffing levels. If we turned up to the hospital on a Saturday morning to find that we were one doctor down, we steeled ourselves for a nightmare and hit the wards determined to fight the fires as they arose. If people died, we attributed their demise to disease, not to a paucity of doctors. Overnight, in the large hospital where I started work, two JHO’s and one SHO* managed all the medical wards and all medical admissions after seven o’clock. The Registrar went home at ten. The consultant was not seen until the 8AM post-take round. That was just how things were. It seemed hard, it felt threadbare, but we did not complain.

Our perspective was centred on our own experience, not that of the patients. As the sun rose to brighten the night-blackened windows after a non-stop night, and the nurses handed over to the early shift, we congratulated ourselves for having responded to the many calls, requests and emergencies that had arisen. The euphoria of finishing the shift counteracted any misgivings we may have had about sailing too close to the wind at times. We felt like heroes. In the pub, we spoke about working in ‘warzones’.  We weren’t happy with it, and the hours before a series of weekend on-call shifts could become heavy with foreboding, but we managed.

If a patient deteriorates during a period of sub-optimal staffing, it is very hard to link their outcome with the number of doctors available. The sick get sick, that is why they are in hospital. Doctors are good at focusing their time and energy on those who need it most, so of those 400 and more patients in Derriford, perhaps twenty will have required urgent medical assessment and a new management decision over an eight or twelve-hour period. The stable majority were looked after by nurses, who could alert the doctors to any signs of deterioration if they developed. It is rare for two or three patients to get acutely ill simultaneously, such that a doctor cannot physically be with a patient during an emergency.

But what if that does happen? A doctor might have to run away from one patient before he or she has sorted them out, to see another one who was just deteriorated. If there are only two doctors, and six simultaneously sick patients, it would appear that a difficult choice has to be made, and the least deserving will go neglected. This is extremely rare. When the alarm goes up, other colleagues (anaesthetists, outreach teams, even orthopods) emerge from the ether. The system stretches. The need is met. So at the end of the day, nobody seems to suffer. There are no ‘serious incidents in which the root cause is felt to be under-staffing. And the patients… they would have had no idea the team was a doctor or two down. So what exactly is the problem?

Well, there was risk. There was probably delay in seeing patient, and perhaps some associated morbidity – but none that could not be measured or proven. And the doctors, for all their coping ability, were strung out, and felt vulnerable. The price to pay for a system running at full stretch is the potential for disaster, stress, a poor learning environment, disillusionment and ultimately burnout. Yet many of us saw this during our training, and said nothing. We were in the problem so deeply, we didn’t see it as a problem. Or perhaps we didn’t have the ability a look up and gain a broader perspective.

Today junior doctors are more vociferous, and, in certain circumstances, more militant. The industrial action that took place last year was the clear example of this. Unsatisfactory staffing levels and training opportunities are now challenged. They do not regard those difficult shifts as a heroic challenge, but as failures of the system which they, the doctors, have a responsibility to highlight. This involves informing management and pressing for locum cover, providing feedback freely and without fear through GMC surveys and empowering their BMA representatives.

Why the change? I think junior doctors are more mature nowadays. Many have competed degrees before entering medicine, or have pursued different careers. They may be more independently minded. As a 24-year old in my first teaching hospital, I was grateful to have been selected for a ‘good’ post. I saw the challenges ahead in terms of my ability to meet them, to avoid failure however steep the learning curve… not to question the organisation itself, or the wider political environment. Therefore, during those years when I worked to the limits of my ability in understaffed areas, I did not complain. I did not seek to improve patient safety by making a fuss. I was, in a way, complicit.

Old attitudes don’t fall away easily. When I hear about an understaffed shift now I worry, and I sympathise, but a hard part of me thinks, ‘They’ll manage. They always manage…You know, back in the 90’s…” etc., etc,, yawn, yawn.

The future requires doctors like me, who appear to have grown older and perhaps a little cantankerous, to recognize that what was once acceptable is no more, and that without fuss, there is no change.

*JHO, junior house officer – first year post-qualificiation; SHO – senior house officer – 2nd or 3rd year post qualification

 

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.

 

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“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.”

 

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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.  – –

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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.

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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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