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Evidence for evidence

At a recent patient safety meeting the subject of the ‘theatre cap challenge’ came up. This is an initiative that encourages all operating room (OR) staff to write their name in pen evid theatrecapon the front of their disposable theatre cap so their identity is clear, which is especially important in an emergency. There have been incidents where not knowing who was who in a tense situation caused patient harm. Seems sensible. But it has not been adopted by all. It is a change. Its proponents do not understand how anyone could argue with it, while opponents explain that it’s not necessary, things have been fine without it, and who are you to tell us what to do anyway? A lively argument has ensued.

One of the arguments against the theatre cap challenge is: what’s the evidence that it improves patient safety? This is a question that can be applied to any change in process. In the discussion I sat in, it was suggested that this question – ‘where’s the evidence?’ is often used to block innovation. Modern medicine is founded on evidence, and we call it EBM – evidence based medicine. Without evidence, a new treatment or process is just a hunch.

Modern doctors were brought up to have absolute respect for evidence, and to base their clinical decisions on it. Most of the time, national or local guidelines and protocols do the hard work for us, having been written by experts who have read and understood the medical literature. Often, in areas that are less well studied, guidance comprises expert opinion alone. There is not always an evidence base to look to. That is not EBM’s only weakness. Trisha Greenhalgh’s 2014 BMJ article ‘Evidence based medicine: a movement in crisis?’ brilliantly describes its weaknesses, which include generalizing ‘average’ outcomes to the non-average individual, excluding the patient’s agenda or voice in decision-making, and the vested interests (i.e. drug and medical device companies) of those who sponsor and develop trials. Because EBM cannot provide every answer, in real life we also depend on ‘XBM’ – experience based medicine. Who is to say which is more powerful, and which is more often right? A combination, surely. For now though, EBM rules.

From the Centre for Evidence Based Dentistry, showing the interaction of evidence with experience and patient’s preferences.

So what exactly is evidence? Classically, evidence is the result of a well-conducted study – preferably a randomised controlled trial in which two or more groups of patients are treated in different ways. In a blinded trial the patients don’t know what treatment they are getting, thus negating the placebo effect. In a double-blinded trial the doctors and nurses don’t know either, so they can’t influence the results with unconscious bias. The patients’ survival, response or well-being is measured over time, and the treatment associated with the group who does best is deemed to have won. Over time, several trials looking at the same intervention or drug can be grouped together for a meta-analysis, the most powerful of studies. Sounds easy. Individual trials take years to plan, develop and analyse. They are well suited to medicines, and have been the mainstay of improvements in survival for patients with leukaemia and other cancers for instance.

Could such evidence be gathered for the theatre cap challenge? Possibly. You could have three hospitals who use it and three who don’t, and measure the number of patient safety incidents in the OR. Or you could analyse one hospital for a year, introduce the cap naming policy, then analyse it for another year. Or… you could all agree that it’s just plain common sense, we don’t need a trial, this is silly, just do it. The latter is tempting. This ‘common sense’ approach seems well suited to certain areas of improvement in medicine. You have an idea, in response to a problem, you develop it, try it out locally, then seek to influence others so that they roll it out. Perhaps you persuade a Royal College or specialist society to make a policy announcement. In a few years, it’s embedded.

The trouble is, where do you draw the line in deciding which innovations require good quality evidence? A new medicine – of course; we would all agree that it should go through phase 1 to 3 of the trial process so that it can be shown to be non-toxic, basically efficacious, and then genuinely safe and beneficial over the long term. Phase 4 studies can then analyse the evid tgneffects on large group of patients after the drug has been signed off. The volunteers who suffered terrible injuries at a trial centre in Northwick Park in 2006 were part of a phase 1 trial into a new molecule TGN1412 – its first use in humans. Following this failure, the drug never reached phase 2. Without that phase 1 trial, many more could have been harmed.

What about new surgical techniques? Should, say, an ‘improved’ drill for making holes in bones be tested against its predecessor in proper trial? A drill is a drill, right? If the surgeons like it, why not just let them use it? Favouring absolute stringency and long-term data collection for surgical kit is the suffering associated with vaginal mesh repairs. This material went through the required tests, but began to be used in a wider range of indications (stress urinary incontinence and pelvic organ prolapse). Now, after numerous reports of injury and reduced quality of life, it is accepted that it should not be used in those two situations. As a healthcare system, we got it wrong. And it took quite some time to recognise it.

The threshold for requiring evidence can change depending on your situation. Some patients who appear likely to die from advanced malignancy are keen to try anything, even if it experimental. Two years ago this led to a major controversy as Lord Saatchi proposed the ‘Medical Innovation Bill’ that would allow access to unproven therapies. He argued that terminally ill people (such as his wife, Josephine Hart, who had died of primary peritoneal cancer) should be allowed to access unproven therapies. The bill was defeated, in part because of the persuasive counter-argument that in bypassing the rigorous trial process the evidence base would be undermined for future patients. Hundreds of people might receive treatment X, but without trials we never be the wiser as to whether it worked or not. Lord Robert Winston, opposing the Bill, recalled how his own father had died in his 40’s from an ‘innovation’ in the administration of antibiotics.

My rational, evidence-based brain also opposed the Bill – apart from the undermining of the evidence base, patients might suffer. Their vulnerability, through illness or desperation, could made them targets for the purveyors of these novel therapies. Yet the other side of my brain thought, if it was me, and if there were no new drugs to try through established trials, I might well ask the same to anything. One chance in a 100 for extra life is better than zero.

evid right to tryIn this instance the requirement for good quality evidence was in opposition to human nature. This instinct was reflected in the media, where support for the Bill was strong in some quarters. Letters were written by groups of doctors. It was emotive. Across the Atlantic, Donald Trump signed off on a US version of this Bill in 2018 – The Right To Try Bill. Typically, emotion was heightened by the presence of a boy who might benefit from it. A populist Bill? A libertarian Bill. For many, a common sense Bill.

Walking through a ward, one sees many practises that are not evidence based. You can take this to extremes. Is there evidence that antibiotics help treat urine infections? Probably not, but we do it. Everybody knows they work, don’t they? Is there evidence that assiduously keeping a patient’s oxygen saturation over 93 or 94% is beneficial? No. Is it really necessary to slavishly maintain their potassium in the normal range? Who really knows, there hasn’t been a study? [Please do correct me if I’m wrong.]

How about this one: is there evidence that consultants doing ward rounds every day to see patients every day is better than their trainees leading ward rounds? No. But wait, what am I saying? Am I suggesting consultants shouldn’t see their patients every day? Well, it’s a question. Jeremy Hunt wholeheartedly supported the driver a 7-day consultant delivered ward service, and invoked evidence to prove that without it more people were dying than would with it. He got himself into trouble, as his interpretationevid 7day and use of available evidence was felt to be flawed. Yes, it seems sensible, eminently sensible to patients and relatives who have sat in the ghost town of a hospital on a Sunday afternoon… but staffing 7 days will take doctors away from other duties during the week. Before making such a major change, surely we need good evidence. Or are those who demand evidence just naysayers and obstructionists who value their weekends too much? Are they vexatiously applying the dogma of EBM to an area that should not require evidence?

Some things are so deeply embedded in our medical education and culture that when evidence is at last gathered, we are surprised. For instance, during cardiac arrests we have always given adrenaline injections. Now, years after this treatment was introduced, there is pretty good quality evidence that it doesn’t help the brain, and might actually damage it when given during out of hospital arrests. The advanced cardiac life support algorithm goes so far as to say there is no evidence that it helps patients long term.

During heart attacks, I always gave patients high flow oxygen; now there is evidence that it doesn’t help. In septic shock, I gave litres of Gelofusine – a once commonly used plasma substitute. Now, it’s basically regarded as poison and can’t be found in the hospital. All those ‘sensible’ ideas, proved wrong over time.

The need for evidence is subjective. The EBM purist may inhibit or at least slow down innovation, while the confident ones who say ‘just get on and do it’ may risk future harm. The current controversy over Babylon’s health app is a good example. It seems like a good idea, but without rigorous testing may end up convincing people who are having heart attacks that they are having a panic attack and just need to relax. On the one hand it appears potentially ‘transformative’, on the other it is formally untested. Is it a new treatment? No. Is it an new process? Most definitely yes! In the light of the mistakes that have come before, it seems sensible to test it, in case we find that a glitch results in deaths or harm.  As it stands this mysterious ‘black box’ of technology is an example, in Ben Goldacre’s words, of ‘closed science’.

evidence goldacre

Once they have it, experts can debate endlessly the merits of the evidence base; an organisation such as NICE exists to do just this. But prior to this, it seems we need to agree on what kind of innovations require evidence, and what kinds justify a ‘suck it and see’ approach.

 

 

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Introduction to ‘When Windows Become Mirrors’

 

  

When Windows Become Mirrors

The 5th collection of articles from Illusions of Autonomy

 

Dedication

To the readers of my blog who through their interest have encouraged me to keep writing for 5 years, and especially to those who have helped spread the word on Twitter, that powerful but mercurial invention.

***

This is the 5th collection of blog posts from Illusions of Autonomy. When I wrote the introduction to the 4th, A Hand In The River, I wondered if that would be the last. The frequency of posts had dropped, due I think to my increasingly specialised role – more interesting on the one hand, but less involving in terms of the everyday human and ethical problems that accompany general medical patients. But then things picked up. There were controversies around under-performing or frankly injurious doctors. Increasingly I reflected on the role of the senior clinician, and how you maintain the skills required to be a good doctor while spending less time on the front line. My perennial interest in resuscitation decisions continued to be prodded by difficult situations in my own hospital, and the frequently lethal nature of the illnesses affecting the patients around me led to reflections on how we (okay, I) communicate in busy and pressurised environments.

Windows into mirrors; reflections. The title of this collection comes from the long walks down dark corridors at three in the morning, when, coming from particularly difficult or stressful clinical situations as a trainee, I used to look in the night-blackened windows and see a haggard doctor who was unsure if he had done a good job. At those times, when our patients’ pathology insists on progressing while the pace of the great machine dials down in the dead of night, there is ample time for self-examination.

Part 1: Night & Day – observations on everyday behaviour in the hospital, good and bad…
Part 2: In Court – arrogance, negligence, and other sins
Part 3: Relating to people near the end of life – how doctors get it right & wrong
Part 4: Resuscitation decisions – not getting any easier
Part 5: Assisted Dying – a true battle of attrition
Part 6: Illustrated essays – on the history of truth in medicine, and how doctors respond after doing harm

 

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The edge

There isn’t time to go into every complaint in a typical clinic. There just isn’t. So, however open my initial question (‘How are things?’), I narrow down to the important matter quickly. Most patients understand this, and tacitly agree to drop other concerns. It sounds like bad medicine; it is certainly non-holistic, but it is real life. If symptoms unconnected to the condition that brings a patient to the clinic are explored for too long, less time will be spent pursuing the potentially dangerous diagnosis. Therefore, patients receive little more than sympathy and a recommendation that they had ‘better see your GP about that.’

Sometimes patients insist though. When this happens, it is necessary to find the language that combines genuine interest (after all, to dismiss something that causes anxiety is just rude) and skilful management of the time-limited interaction. However, if despite the nuanced nods, silences and redirections, the primary issue continues to be relegated to the background, less subtle tactics are required. Perhaps, ‘Sorry Mr ______, we really should concentrate on what your GP wrote to me about,’ Or, ‘I can tell that’s causing you some real problems, but I’ll have to ask your GP to refer you to another clinic…’

Recently, I found myself in this situation. I had finished examining the patient and was sitting at the desk, looking at x-rays and blood results, trying to work out what tests to arrange next. From the couch my patient returned for the third time to an irrelevant (to my mind trivial) complaint. Filtering his words ruthlessly while I concentrated on the most efficient path to a final diagnosis, I mumbled something half-hearted and non-committal. There was a pause. He rose from the couch and said,

‘Oh, forget about it then.’

The sharp edge to his words pulled me out from the clinical, impersonal space into which I had fallen. One rarely hears such a tone. I saw that I had been rude. I turned in the swivel chair and back-pedalled desperately,

‘No, it’s important! Sorry! Have a seat. We need to think about how you can get it sorted…’

Gradually, the consultation was retrieved. Left as it was, the encounter would have gone the way of many hospital appointments – into the ‘he/she barely listened to me’ category. We discussed the other matter, and I promised to do something. He left content (I think, I hope). The appointment overran. But I owed that, for losing sight of what mattered to him, and steering too close to the edge of a precipice down which trust can easily be lost.

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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 patients, and perhaps some associated morbidity – but none that could 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

 

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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Batteries are low: the work of engaging in DNACPR discussions

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

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

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

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

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

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

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

“Ok. Where to next?”

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

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

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

We see some more patients.

Then we come to the third.

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

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

“Yes.”

“What if they deteriorate?”

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

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

 

 

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

 

~~~

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When death is not the end

gazette

This week’s report about a nurse being disciplined for failing to ‘revive’ a clearly deceased nursing home resident, has caused consternation. According to the description given, the woman was ‘yellow, waxy, almost cold’. But a rule mandated that the nurse on duty should commence basic life support and call an ambulance. For her to be punished seems perverse*.

The big fail here is not so much the rule (which is to maximise safety and ensure that no opportunities are lost to reverse acute deterioration), but the fact that the woman did not have a community DNACPR order. Such an oversight could be written about at length, and the difficulties doctors, families and patients have discussing the subject have been explored on this blog.

The other problem this case reveals is our general confusion about the transition between life and death. There is a phase in dying, perhaps fifteen minutes (longer if hypothermic – I am happy to be corrected) where vigorous efforts to restart the heart might result in more life and acceptable cerebral function. For this to happen, the heart and other organs need to be in reasonable condition. If death was sudden, re-opening a coronary artery might be all that is required. But if the patient had been ailing for a year, or succumbed to a spreading cancer, nothing will work.

So, when a nurse or a member of the public comes across a seemingly dead person, what tells them whether it is right to start basic life support, or respectfully cover their face? If the situation is at all unclear, it seems there is only one defensible answer – try to resuscitate.

When I did Advanced Cardiac Life Support training years ago I was fascinated (and disgusted) by a paragraph in the manual that described situations where resuscitation was clearly inappropriate. These included decapitation and separation of the body into two halves (sorry to make you queasy, that’s what it said; I’m not sure if the current version still includes this). It may have mentioned rigor mortis. But it did not talk about the ‘waxy’ or ‘almost cold’ person.

Faced with such ambiguity, people are quick to refer back to earlier times, when community doctors or wise neighbours were called to see people in their homes, whereupon they calmly observed that the patient had died and that there was nothing more to be done. Now, such acceptance can only occur if, prior to death, there has been a series of clear discussions and agreements (all documented) regarding resuscitation, transfer to hospital, or escalation of care.

This has come about because modern medical techniques can do much to delay death. The burden of heroic interventions has to be considered of course, hence the need to think about such things before they happen. However, the medical reflex is to treat and save. The reflex applies to all people by default, even those who appear too frail to benefit. Thus, the nursing home has a ‘reflex’ that patients found unconscious and without a pulse should be rushed to hospital unless there is a DNACPR order in place.

This evolution in our ability to preserve life has diminished the validity of the experienced nurse’s, or lay-person’s, impression. He or she is no longer trusted to recognise established death. In the case reported this week, the diagnosis of death was, presumably, only valid if made by paramedics, or by the A&E doctors who might have received her (intubated, cannulated, perhaps with intraosseous access lines protruding from both shins).

There is an argument that only those who have been trained to certify death should be allowed to bear the responsibility, and it is interesting to note that the nurse in this report has subsequently received such training. However, a part of me wonders how it is that death, which has been part of our experience since homo sapiens began spread across the globe, is still such a mystery that one needs to go on a course to recognise it.

Most ward nurses, or trainee doctors who have led a crash team, will have been in a similar situation. From a doctor’s point of view – the crash call goes out, you run to the ward, and observe nursing colleagues performing basic life support. Collateral information soon paints a fuller picture – the patient was last seen alive four hours ago; they were ‘stone cold’ when the nurse came to routine observations at 6AM; clearly, the patient died peacefully in their sleep. But, in the absence of a DNACPR order, a crash call had to go out. As the medical registrar you must now decide whether to call the resuscitation attempt off immediately, or continue for a few minutes just to make sure that there is no return of spontaneous circulation (a heartbeat and a pulse). Most doctors in this situation continue until they are sure the patient is truly dead, as they will not have known the patient and do not feel confident in stopping the attempt immediately. Some of the reasoning here is defensive. You could be criticised for saying ‘stop’ without having gone through the algorithm.

It seems to me that there is still a place for the healthcare worker’s common sense opinion, especially if they know the patient – ‘She has died, let’s ring the next of kin… no, don’t call the ambulance, don’t start compressions. They have died.’

Recent BMA/resuscitation council guidelines do, to some extent, take such ‘common sense’ into account –

…there will be cases where healthcare professionals discover patients with features of irreversible death – for example, rigor mortis. In such circumstances, any healthcare professional who makes a carefully considered decision not to start CPR should be supported by their senior colleagues, employers and professional bodies’. [see previous post on this here]

Despite this, and even with the support of medical colleagues, while nurses feel vulnerable to censure, only those with great confidence will risk not calling the crash team when they find a dead patient.

 

* We have very few details, so the arguments and conclusions drawn from the case here are generalised

***

 

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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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So superior… – making judgements on medical care

 

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The Amber Spyglass (or what a retrospectoscope might look like)

 

Patients may see many doctors during the assessment and treatment of a particular illness. In the transition from primary to secondary care, medical opinion becomes more specialised, and the knowledge of the doctor facing the patient deepens in that particular area. Doctors become more confident in their opinion, and in the light of information are able to judge the quality of the decisions taken earlier on. This means that the specialist must, either privately or openly, pass judgement on what has gone before. Usually there is no controversy, because nothing incorrect was done. But sometimes, looking back, it becomes apparent that clues were missed. Things may have been done ‘sub-optimally’… according to the specialist’s very particular expectations.

The decision then has to be made – do you, as the specialist, tell the patient what you are thinking, or not?

The answer to this would seem simple. If by omission or commission the patient has been harmed, there is a responsibility to be open about it. However, harm is difficult to define, and the grey zone between delay and harm is broad. An abnormal blood test performed fifteen months ago might, if interpreted correctly, have led to an earlier diagnosis – but who can measure by what degree the patient’s life has been affected?

For the patient, finding out that two years ago a scan showed some early signs of liver damage, or that an abnormal vitamin level went unnoticed and uncorrected (contributing to months of fatigue), the conclusion is bound to be that things were not done well. The question of blame arises. The patient may ask  – what do you think should have been done? What do you think about the quality of the care I received? Patients, in fact all people who receive a service from a professional, like to benchmark. It is natural.

It isn’t just at the transition between primary and secondary care that judgements on the quality of care may me made. On the wards, once a patient is established under the care of a specialist team, questions may be asked about the time it took to reach a diagnosis, or about the appropriateness of initial treatment. If the wrong diagnosis was reached (say, heart failure rather than chest infection), was the error acceptable? Was it just the way medicine works, with the correct diagnosis emerging over time, as pennies dropped and more experienced people made their assessment – or was it just bad medicine?

The temptation for doctors is to close ranks, and to present the hospital, or the health service as a whole, as a seamless unit where information comes in and decisions are made, by individuals yes, but by professionals who are part of a larger machine. Individuals shouldn’t be criticised; rather, blame the system.

I remember once, as a registrar, the family of a deteriorating patient asking me the name of the doctor they saw in casualty, who they felt did not diagnose the illness quickly enough. In the relatives’ room they pressed me hard, and demanded details. I felt that the presentation was complex, and that the quality of initial assessment had been satisfactory, if not genius. So I refused to give a name. I talked about the ‘team’. In my wisdom I felt that it could not help the situation to offer up an anxious SHO, and that the request reflected the family’s grief and uncertainty. The family needed a focus on which to direct their anger with the situation. Was I right or wrong?

On other occasions, in clinic, I have had to explain as best I can the decisions made by a doctor – often a GP – whom I have never met. I may end up saying things like, “Well, based on the information that was available eighteen months ago, it wasn’t unreasonable to monitor the situation…” Or, “Perhaps another doctor might have referred you six months earlier, if they had a special interest in this disease, but yet another might have waited a year. There is no right answer.” Or, if the patient asks me up-front whether I think their GP is any good, based on what has happened before, “It is not fair for me to pass judgement… I see patients with your problem nearly every day, and I come to this with a very specific expertise. Your GP has to decide when to refer… and it’s perfectly reasonable to monitor things for a while first.” I may say this even I think, privately, that they can’t have been that up to date with modern medical thinking on the topic in question. But who am I to criticise? What do I know about psychiatry or gynaecology?

So what drives this instinct to obfuscate? Is there a justification? Surely, in an era of transparency, the patient should know exactly what I am thinking.

It may be a desire to nip a potential complaint in the bud, even when I think a complaint (formal or informal) might be unjustified? If so, am I right to forestall what a more objective person might regard as a necessary corrective?

It may be loyalty to the larger medical community – an instinctive reflex to shield colleagues from criticism, just like in the relatives room on the ward all those years ago.

Or perhaps it is based on my acceptance that the practise of medicine will always involve variation in knowledge and in quality. Not every biochemical clue will result in the same decision. Each doctor will have developed their own store of knowledge, a unique bank of experiences and memories on which to base their decisions. As long as the decision was not clearly negligent, or so stupid as to warrant immediate correction, we are bound to let borderline or ‘sub-optimal’ decisions go without making a song and dance. We might hint in a letter back to the GP, or in a comment to a trainee’s supervisor, that next time a different decision should be made, and perhaps in that way we reassure ourselves that we have tried to improve the quality of the system as a whole. But patients are excluded from this feedback loop. They may go home entirely ignorant of the fact that things could have been done better, and may not read between the lines of the letter that they are copied into.

In modern medicine patient involvement is key, and transparency is a central pillar. We have a duty of candour which applies to identifiable errors of a certain gravity, and no doctor will overlook a pattern of behaviour that clearly puts patients at risk.  But no such duty exists for reporting back on the grey cases where some educational improvement can be made. Is it reasonable not to inform patients in these circumstances? Would it help them? Or would it just cause confusion, and a loss of faith?

Over time I have become more honest about the non-scientific nature of medicine. Sometimes I begin a discussion with the patient with the papers spread out in front of me, or the blood results on the screen, and talk through what may or may not have been going on in their body over the last few years. If I think a spike in a liver enzyme might have been an early signal, which in retrospect was missed, I will tell them, but without loading it with an opinion. It’s just a fact. The ‘retrospectoscope’ can provide a false image of the circumstances that existed years before. Now you are here, let’s sort it out. There is no point in opining from the security of the specialist’s chair. Misdiagnoses are made there too.

In this way patients can begin to understand that the narrative of illness may follow numerous detours and diversions before the destination – a firm prognosis, a treatment plan – comes into view. Care is not homogenous, and variability, while sometimes permitting the occasional detour, is an inevitable result of human involvement.

 

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Not ready yet

Much is written about the importance of doctors and patients talking about dying. The harms done by not talking about it are many, and have been described in this blog many times. Inappropriate resuscitation attempts, futile spells in ITU that the patient would not have wanted if asked, inaccurate guesses by distant relatives as to what their priorities are… for want of a conversation.

So as doctors we have become more comfortable and ready to have these discussions. We identify clues that the end of life is approaching, and rather than walk on leaving nature to do its worst, we let the patient know. We accept the challenge of breaking the news, even if the clues have been there for other doctors to see for some time. The patient is under our care now – it is our responsibility to make the intervention.

Those of us who feel strongly about the harm done by reflexive escalation or lazy evasions may have a lower threshold for engaging in end of life discussion than others. We may judge our colleagues harshly for dodging the difficult conversations.

But sometimes, we get it wrong.

 

***

 

Dr C looks through the results of recent investigations. The patient, Jean, has been admitted with heart failure, a longstanding diagnosis. Her performance status has deteriorated over the last three months, and she is NYHA grade III (‘Marked limitation in activity, even during less-than-ordinary activity, e.g. walking short distances. Comfortable only at rest’). She has spent four of the last ten weeks in hospital. She is 78.

Dr C, who has never met her before, decides… it is time to talk about dying.

 

 

Dr C: Jean, I’d like to speak with you today, about the future.

Jean: Of course. Take a seat on the bed.

Dr C: Your heart. It’s getting worse. I’m worried about it. It seems to me, it’s getting weaker and weaker. On bad days, it’s barely strong enough to keep you going.

Jean: I manage.

She’s defiant, of her illness, of her situation.

Dr C: Has your doctor spoken to you about what might happen if it gets any weaker?

Jean: No. Should he?

Dr C. Well, it doesn’t matter, we can speak now. I’m worried that if there’s a crisis you may die… of heart failure. I think we need to discuss this.

I’ve said it, the D-word.

Jean:  You’re the first to mention it.

She’s pushing back, she doesn’t want to have this conversation. I feel uncomfortable. But I’m going to carry on. The situation demands it.

Dr C. What family do you have Jean?

Jean: My son. He lives in Newcastle.

Dr C: Is he coming to visit?

Jean: He doesn’t know I’m here yet.

She’s strong, doesn’t come across as vulnerable. I’m not going to suggest we wait for the son to come down…

Dr C. So, Jean. I’ll be frank with you. Many people with a heart as weak as yours do not survive longer than a few months. It’s quite possible that you only have that much time left. I think it’s important that you know this, and…

Jean: How long am I in hospital for then?

This is hard! I feel like I’m forcing it on her. She’s clearly got mental capacity… is she just evading the issue? Do I go on? I must. And I must be clear. I must be blunt.

Dr C: OK. Basically, I think you need to know that you might be dying. And I think your family need to know this, so that you can make any plans, or decisions.

Jean: Like what?

Dr C: Well, for instance, if you were to deteriorate, and we could only give you comfort care… would you rather be at home, or…

Jean: Of course. I hate hospitals.

Not sure I’m doing the right thing here. She’s not getting it. But it’s my job to make her get it.

Dr C: So imagine, you get another chest infection, and the strain causes your heart to pump even less well… we make you as comfortable as possible, but you may not be able to communicate, so we, or your family, need to understand more about your wishes, where you would like to be, what you wouldn’t want… that way we can give you the best care.

Jean: So what do you need from me right now?

It’s not what I need Jean. It’s what you need.

Dr C: Nothing Jean. Just… just for you to think about it. The future. OK?

 

Jean is transferred to the heart failure team. Ten days later Dr C happens to pass her on the ward . Jean glances up, but does not smile. A member of the cardiology team stops Dr C, and, with an embarrassed look, explains that Jean’s son came in and caused quite a fuss. He was angry that a doctor told his mother she was dying, without him being there. He found Jean in a very depressed state. She said that the doctor is question was very matter of fact… ‘It wasn’t kind,’ the son said.

“But she needed to hear it,” replies Dr C, sighing.

“Well the son thinks not. Not yet.”

“When then? What’s happening now anyway?”

“We off-loaded her, she looks a little bit better. Going home tomorrow. Big care package.”

“And did you do a DNACPR?”

“She didn’t want to discuss it. But we did it.”

“And pall care?”

“We’ve asked the GP to refer in the community…”

Dr C walks away. She is sure she was right to start that conversation. She is sure that her intervention, although painful, has set in motion a series of conversations and decisions that will, ultimately, benefit the patient. But the fact is, she has caused some harm, in the short term. Harm to Jean – who was upset; harm to the son, who walked into the aftermath; and harm to herself, who now feels like an evil-doer.

Wouldn’t it have been simpler, in this case, to respond to those early vibes – Jean’s evasions – and walk away? Isn’t it appropriate, sometimes, for a patient’s desire to avoid the hard questions to be respected, even it means they meet death in a relatively unprepared way. Even if it means that there is no DNAR decision, no stated preferences.

Or did Dr C misjudge things?

At the end of the day, it was Dr C’s opinion – her accumulated wisdom on such matters – vs the patient’s own instincts. The patient’s preference in fact. A preference not to engage, until the writing was truly on the wall. A preference Dr C tried to overturn.

As a result Dr C became a little more cautious, and a little more ready to leave things as they are. Her career would probably see many such corrections, one way or the other.

(Fictional case)

 

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