Medical education

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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‘I wouldn’t want it but…’ – commentary on an important paper

 

do unto others title

This study, published by the open access journal PLOS1 last week, approaches but does not solve two important questions: Why do doctors provide intensive treatment at the end of life when they would never accept it themselves? And how can they propose such treatments when evidence suggests that patients do not want it?

The paper begins by presenting general data on public opinion about preferences at the end of life, such as,

‘More than 80% of patients say that they wish to avoid hospitalizations and high intensity care at the end-of-life, but their wishes are often overridden. Most patients at the end-of-life prefer care that is focused on augmenting their comfort and dignity…’

and,

‘Studies show that the end-of-life care patients receive depends not on the patients’ care preferences or their advance directives (AD) but rather on the local health care system variables like institutional capacity and individual doctors’ practice style’

So the authors asked over a thousand young doctors about their attitudes to advanced directives (ADs), which in the US are an established method of allowing patients to determine, broadly, what sort of treatment they receive in the context of critical or incurable illness. The questions cast ADs in both a positive and a negative light, and examples included:

dountootherssamplesquestions

The 2013 group were also asked to fill out a simulated AD themselves, which look like this:

  1. Choice To Prolong (full-code status): “I want my life to be prolonged as long as possible within the limits of generally accepted medical treatment standards” (or)
  2. Choice Not To Prolong (no-code): “I do not want my life to be prolonged if the likely risks and burdens of treatment would outweigh the expected benefits, or if I become unconscious and, to a realistic degree of medical certainty, I will not regain consciousness, or if I have an incurable and irreversible condition that will result in my death”.

Their answers were compared to a large group of community doctors who had been asked the same 14 questions about ADs in 1989, just as the Patient Self Determination Act was about to be passed. The two groups are quite dissimilar, and although I did not find the comparison between two eras that enlightening, the authors did find significant differences in 3 aspects:

‘Compared to 1989 cohort, the 2013 doctors (a) were unlikely to believe that AD will lead to less aggressive treatments even for patients who do not have an AD (b) had greater confidence in their treatment decisions if guided by an AD and (c) were less worried about legal consequences of limiting treatment when following an AD.’

The contemporary respondents were generally supportive of the idea of ADs, and did not feel that use of ADs posed a threat to the fundamental duty of doctors, the preservation of life, in other contexts. They felt that ADs can enhance autonomy and can legitimise the therapeutic decisions that are taken for patients.

The study also found that doctors’ attitude to ADs varied according to their specialty, the calculated Average Advance Directives Support Score (based on how they responded to the 14 questions) being lower for radiation oncologists, for example.

As to what the doctors would want for themselves…they clearly, and predictably, wouldn’t want prolonged intensive treatment.

‘The majority (n = 954 or 88.3%) of the 2013 doctors opted for the Do-Not-Prolong Life (no-code status) for themselves when terminally ill. Only 11.7% of the doctors opted for the Choice-to-Prolong Life (full-code status) for themselves. Doctors who were less supportive of AD were more likely to opt for full-code for themselves…’

The final line suggests that those who would rather be resuscitated are less supportive of engaging patients in discussions on their preferences.

In the discussion the authors explore possible reasons for the disparity between doctors’ general acceptance that the intensity of treatment should be moderated when the effects of chronic, incurable disease draw patients the into the last year or months of life, and what a actually happens – which is quite different. The reasons are largely based on conjecture, and do not relate to the data presented in the paper (which I can never get away with when I try to publish papers!). They come up with 4 possible explanations –

1) Doctors have been witnesses to the undesirable burdens of treatment: ‘…it is likely that doctors recurrently witness the tremendous suffering their terminally ill patients experience as they undergo ineffective, high intensity treatments at the end of life and they (the doctors) consequentially wish to forego such treatments for themselves’

2) …but they are unrealistic when it comes to their patients’ chances: ‘…doctors tend to be very optimistic and overestimate the prognosis and life-span of their patients. This results in escalation of high burden technological interventions until it is clear to all stakeholders that the patient is dying. Sadly, this clarity often comes in the last few hours to days of life, resulting either in terminally ill patients experiencing highly medicalized death in hospitals or in very late referrals to hospice care.’

3) The system default to intensive treatment: ‘…the culture of modern biomedicine with its default set to maximal interventions for all patients, irrespective of the effectiveness of doing so. This may foster implicit biases in doctors causing them to override their patients’ autonomy when the patients’ choices are in conflict with what the doctors believe will benefit the patient.’

4) And in the US at least, money is involved: ‘…the current fiscal system rewards hospitals and doctors for medical procedures and providing high-intensity care to terminally ill persons and does not reimburse them for conducting prophylactic conversations that elicits values and goals of care and what matters most to patients and their families at the end of life.’

There is much more that could be said here. In the field of acute/general medicine doctors meet patients who would benefit from being engaged in a conversation about end of life care on a daily basis. In the UK this would not necessarily be expected to result in a detailed AD (which in my experience remain rare), but perhaps an agreement on resuscitation status and a general inclination about where they stand on prolonged organ support. Other reasons for failing to broach end of life scenarios might include:

Non-holistic focus: perhaps specialists are seeing patients as diseased bodily systems that need ‘managing’. This is age old accusation, but one that still bears scrutiny. The PLOS1 one paper includes an interesting observation in the introduction;

‘there was a twelve percentage point increase in Medicare beneficiaries who saw more than ten different physicians in the last six months of life, especially medical subspecialists…’

It may well be the narrower one’s area of specialisation, the harder it is to see the whole picture.

First contact: if you are one of those ‘ten different physicians’, it is hard to steer the conversation directly into the realms of pessimism. When seeing patients for the first time, it is natural to want to focus on the positive. It requires some confidence to be open and honest about the utility, or futility, of treatment from the outset.

Precedent: …and why did none of the previous 9 physicians bring up the subject of dying? It is quite common to meet patients who are clearly near the end of life, and who has been under other specialists, but who have never been engaged on the subject of end of life preferences. Sometimes you begin to wonder – well, if they didn’t bring it up, why should I?

A trial of therapy: because the default approach, quite rightly in medicine, is to try to prolong or preserve life, an intellectual compromise that appears to justify intensive treatment is the ‘we’ll try a period of aggressive support, but if it clearly isn’t working it may be time to discuss comfort measures’. In this way patients can easily move into an intensive medical environment, a move which sometimes acquires a momentum of its own. I have written about this is ‘5 days – a tale of escalation creep’

Finally, a question that challenges the paper’s presumption – are we really subjecting patients to treatment against their will? I don’t think so. I don’t know of any patients who have been taken to intensive care, or given chemotherapy, or undergone surgery, against their wishes. It is more likely that we are not facilitating patients in the difficult and subtle process of articulating what they truly want from the medical system into which they have entered; a system that can do just about anything, unless you say no.

 

oOo

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Hollow heroes

heroesframed

Artist unknown, photo taken in Covent Garden market 14.12.13

Justifiably or not, young doctors are inspired and motivated by the thought that they might, one day, save somebody’s life. Opportunities come rarely, but spend long enough in a hospital and one day you will find yourself in a situation where a single action (be it a procedure, a prescription or a revelatory, previously un-thought of diagnosis) will stop a patient from dying in front of you. You cannot help but walk away immensely pleased, brimming with adrenaline enhanced satisfaction.

Some would say the temptation to wallow in a bath of warm aggrandisement is self-centred. It may encourage a too narrow perception of the clinical encounter, diminishing the suffering or fear felt by the patient and magnifying the importance of the doctor. For after all, who really matters here, you or the person who’s life has been saved? But I would defend the doctor who excitedly recounts such an episode to a friends or partner by inserting themselves in the lead role, because to suppress that pleasure, and take the puritanical view that ‘it’s just my job, it means nothing’ would be to deny doctors access to a very important source of job satisfaction. However, experience has told me that there is a quid pro quo, one that is revealed when things go badly. We must ask ourselves – how happy are we to take the lead role when our actions or omissions contributed to suffering…or even death?

My SHO and I (a registrar at the time) were called to see a patient with cirrhosis who had started to vomit blood. We resuscitated him, decided it was safe to take him down for an endoscopy, and within half an hour we were watching the varix spurting blood across the field of view on the monitor. I fired two bands, the bleeding stopped, and the drama was over. My SHO looked across, still squeezing the second bag of blood and clearly impressed, and said,

“You just saved his life.” What impressed him, I think, was not my specific role in this, but the fact that a procedure could so swiftly stabilise a patient. The experience would prove a clincher for him…he had been thinking about choosing this specialty and the opportunity to perform heroics, like this, was just what he needed to witness.

But as we walked back to the ward I began to explain,

“It’s not me, or us, who saved him. If we weren’t here today there would be another registrar, and another SHO, who would have found him and ‘scoped him. The chances are they would have done just as good a job.”

“But it was you. You made the diagnosis and sorted everything out.”

“But those were not exceptional actions. They are just what you do in those circumstances.”

“You may as well give yourself a bit of a pat on the back.”

“I am, internally, because I’m glad we made all the right decisions. But what we did was normal. We are working in a system that is designed to allow us to find patients who need us to apply our training and skills, so really it’s the system that saved the patient. Not us personally.”

“So you don’t get any fundamental satisfaction from that?”

“I do, but I have to put it into perspective. So do you. Try this. Imagine we had got the patient down here…no…imagine YOU were the registrar and had got the patient down here. And imagine you were doing the endoscopy, found the varix, but messed up somehow. You didn’t set up the banding kit properly, or you chose the wrong place to band. And he kept bleeding. Then he vomited blood and aspirated, then had a respiratory arrest and died in front of you. How would you feel?”

“Awful.”

“And would you blame yourself?”

“Yes.”

“Really?”

“Of course I would, if I messed up.”

“Up to a point. But I think I know what your mind would do. Everybody does the same. You feel bad, you go home, you think on it, you talk to your mates…then you rationalise. — He was in a high risk group — The endoscopy nurse should have told me the banding kit was not set up correctly — In fact she should have set it up anyway — There wasn’t time to arrange anaesthetic support — The varices must have been under high pressure — These patients, what do they expect when they drink all their lives? –…”

“I would never think that.”

“The mind can go to some dark places when you feel under threat.”

“I wouldn’t just rationalise it away.”

“Perhaps, to some extent, just to keep yourself functional. My point is, whenever you are tempted to congratulate yourself on a job well done, imagine how prominently placed you would want to see yourself in the scene if things hadn’t gone well.”

“It sounds very joyless.”

“A bit. My advice is, enjoy the satisfaction, but don’t talk about it. Because fate has a way of arranging things so that after every example of brilliance or skill, something comes along to bring you straight back down to earth.”

oOo

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The moment: a tale of three doctors

threedoctors‘…in the raw cold of that leaden crisis in the four-and-twenty hours when the vital force of all the noblest and prettiest things that live is at its lowest…’

Charles Dickens, Our Mutual Friend

_____

‘This seraph-band, each waved his hand:

It was a heavenly, sight!

They stood as signals to the land,

Each one a lovely light’

Samuel Taylor Coleridge, The Rime of the Ancient Mariner

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3.45AM A medical ward

Mark Smithson, two years qualified, held the telephone to his ear and spoke urgently, trying hard not to impart his sense of desperation.

“I am really worried about him. His blood pressure is much lower than earlier, I can’t give him more diuretic, but his breathing needs it.”

“From what you’ve told me there’s nothing more to be done at the moment. Isn’t he end stage?”

“I don’t think so, he only had his heart attack four months ago. There’s something about him I don’t understand. Can you come and see him?”

“Look, it’s pretty clear what the problem is. His heart failure is getting worse, perhaps he’s been run a bit dry as well. Give a few boluses of fluid, see how he responds.”

“When will you be free? There’s something about him…”

“Why don’t you let me know how it looks in a couple of hours, and if he is no better I’ll come and see him. It’s a really busy down here. I think you can manage the situation. Are you okay with that?”

“Yes.” But Mark meant No.

He began to put the phone down. He was deeply tired, working the third of five night shifts and not yet adjusted to the nocturnal rhythm. His tongue was thick with cheap, over-concentrated coffee. The battle, one of many, could not be won right now.

He heard a rasping breath by his ear, and looked up. An old man in a hospital gown, a patient whom Mark did not recognize, stood by his side. He placed a cold grey-veined hand on Mark’s wrist and held it.

“Excuse me! Err…sir, do you want go back to your bed?”

“Shhh! They’re sleeping.”

“What are you doing?”

“You can ask me later. This is your moment. I am your moment. I’m here to show you what happens.”

“What happens to what?”

“What happens to you if you put that phone down. Come with me.”

The old man took away his hand and beckoned. Mark stood and followed, completely in his power. Looking back he saw that the phone’s beige handset hovered in the air above the nurses’ station; he had forgotten to replace it. The two of them, one short and bowed, the other tall and young, left the ward (there were no nurses to observe them – where had they gone?) and entered a corridor. A blue light bathed the floor, and Mark looked up to see what had happened to the lighting.

“Look through this door Mark.” A door had appeared in what had previously been an exterior wall.

He peered through a small rectangular aperture, into what should have been the night air; instead he saw a gleaming new department. A patient was being wheeled through an ante room toward what looked like the doors of an operating theatre.

“What is this?”

“Look at the anaesthetist Mark. I give you the gift of lip reading for now.”

“What’s that thing moving over the patient?” A large white disc, the size of a dustbin lid, emitting the same blue light that Mark had already noted, hung from a gantry.

“That’s just a gamma bath. Patients are routinely sterilised in 2029, there’s global antibiotic resistance. You can’t do an operation if there are any microbes on the skin. The surgeon is under her own gamma shower, round the back. It doesn’t seem to cause any damage over a career, that’s what they are told. Can you hear what he’s saying, the anaesthetist?”

Mark focused on the man’s lips and found that he could understand everything. The anaesthetist was chatting to a younger colleague.

“Sounds complicated.”

“Who should I refer her to?”

“I’d suggest Dr Smithson.”

“I’ve heard he’s…”

“He can be a bit difficult sometimes. Once he get’s a bee in his bonnet he jumps up and down if he doesn’t get his own way. It doesn’t make him a lot of friends, but for someone in your patient’s situation I think he’s the one I’d choose. He doesn’t give up, he doesn’t mind causing a few ripples.”

“I heard he was a bit of a nightmare. You can’t run around demanding the whole hospital does what you want. There are other patients, other consultants. I heard he refuses to give up on anybody, even when the writing is on the wall.”

“Perhaps he over-treats sometimes, but the fact is he’s probably the one you’d want looking after your mother, father, whoever…”

Mark felt the cold hand on his shoulder, a finger brushing his neck.

“That’s enough.”

“They were talking about me. They used my surname.”

“So they were. Now come with me, I’ve got something else to show you.”

They walked to the end of the corridor until they came to another door. Mark looked through another small window, and saw that the door was connected to the back of an outpatient clinic room. He saw the back of his own, more aged head. A patient faced his older self, seemingly unaware of the younger doctor observing the consultation.

“So there’s nothing more you can do doctor?”

“I can’t see any other options. I’m sorry.”

“So that’s it. I’ve got to live with this. Or not live, if it gets worse.”

“I’ll write to your GP, explain it all.”

“But she can’t help me. I need you to write to them, get them to agree to fund the nano-stems.”

“It’s not my decision, it’s been agreed that patients with renal failure don’t qualify…heart, brain, liver failure yes, but not kidney, not yet.”

“But since the ban on anti-rejection drugs there’s no hope of a transplant, stems are my only option now. You’re sentencing me to death!”

“Not me. We don’t agree with it, but we can’t overturn that decision. I’m sorry. Things might change, I’ll keep an open appointment on the system…”

“Right. Right. I get it.” The patient left. And now Mark’s point of view followed the patient, he flew through the room and into the waiting area, leaving his older self behind. He saw the patient sit down heavily, heard him sigh sadly. Mark watched him as he typed a message to his partner – ‘No luck.’ A nurse came to ask the patient if he was alright, she seemed to know him.

“Final decision?” she asked.

“Seems like it.”

“I shouldn’t say this…but have you thought going to see someone else. There’s a consultant at St. Jude’s, he’s managed to get stems for a few patients off protocol. He just keeps writing letters until they agree…”

The patient left, thanking her politely, not really taking in the advice. Then the nurse walked up to a colleague, and whispered,

“It’s a shame. They can get them, if they fight for it. He doesn’t care, or can’t be bothered, if you ask me…he doesn’t exactly put himself out does he…”

The scene shrank away as Mark felt himself fly back through the small window into the corridor. His scrawny guide was already walking back to the ward, and Mark hurried to catch up with him. They re-entered the ward. The old man walked resolutely to his bed, leant over stiffly to reach the edge of a sheet, drew the linen back and folded his wasted legs into the uninviting space beneath. He lay back, his eyes closed, but spoke again,

“Those are your futures. Now go back to the phone, but before you hang up think hard. Your registrar is still listening.”

“I don’t understand.”

“You have a choice. What does your patient need, right now?”

“Someone who knows more medicine than me to work out what’s going on.”

“And what’s stopping you insisting on that senior review?”

“I asked didn’t I? And I got some advice. What more can I do?”

“What would you do if it was your father?”

“I’d insist.”

“But not for this patient? Why?”

“I…I don’t want to annoy my registrar, he’s busy.”

“So it’s you you’re worried about. Reputation. Ripples. Goodnight.” He rolled onto his side.

Mark’s hand encircled the static, hovering handset. Time restarted. A nurse walked past briskly, a buzzer sounded, a patient groaned in her sleep and asked for her long dead husband.

“No…wait!” Mark’s voice, stern, assertive.

“What?”

“I need you to come to see him. He is deteriorating quickly, I don’t know what’s wrong with him. Sorry, I’ve tried, but I need to you to see him now. It can’t wait.”

“I…I…told you, I’m stuck here…”

“Shall I call the consultant at home?”

“What?! Christ, you mean it don’t you. OK, OK, I’m coming.”

Mark could only imagine what he was saying under his breath.

When the registrar arrived Mark nodded, embarrassed, and led him straight to the patient. His bed was opposite that of the spectral guide. Mark glanced at it, and saw that it was now empty, in fact it was neatly made in readiness for a new patient. The registrar assessed the cardiac patient, scrutinised the ECG and began to smile.

“Very strange. Normal saturations, but this ECG is different. Right heart strain. He needs a scan urgently, he may have a pulmonary embolism. And if we’re right I’d be tempted to thrombolyse him. Nice one!”

“Well we don’t know yet.”

“It’s likely, he’s been in bed for two weeks with those huge swollen legs.”

“Thank you, for coming.”

“You knew it wasn’t right. That’s the lesson I’d take away from this – believe in your instincts…and persist! But you don’t need to learn that lesson, it seems.”

The registrar left Mark to make the arrangements for the scan. Mark returned to his ailing cardiac patient and looked over once again toward the empty bed. There was somebody in it. A bony hand beckoned him over.

“Good decision Dr Smithson.”

“Thank you.”

“You alright doc?” A nurse looked at him quizzically. “Too many night shifts, talking to yourself?”

“I’m fine. I’m fine.”

Mark thought he could discern a faint blue glow beneath the sheet, but the morning sun soon banished the impression.

oOo

With apologies to Dr Who (The Day of the Doctor) and Dickens’ A Christmas Carol

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The cusp: ethics of the learning curve

learningcurve

 

There is a moment in medical training when you think you are ready to go it alone. The difficulty is deciding when that moment has arrived. Independence, working without supervision, is a watershed moment.

Imagine this situation. A gastroenterology registrar who believes that she is ready to deal with bleeding ulcers receives a phone call. A patient is bleeding in the ER. She makes arrangements to bring the patient to the endoscopy unit. She decides not to call her consultant because he has said on a number of occasions that she is ready. He has ‘signed her off’. The patient now awaits her; she takes the endoscope and passes it into his mouth. She finds the ulcer quickly and knows what to do. But it is bleeding rapidly, and the views that she obtains are not very clear. She knows what to do. She washes the ulcer, tries to clean the blood away, but still it bleeds. She begins to feel nervous…even more nervous. She asks for a needle with which to inject adrenaline, hoping that this will slow the bleeding down. Then she might see enough to apply some definitive therapy, a clip or thermal coagulation.

She waits for the endoscopy nurse to get things ready, and watches the patient. The elderly man is sedated, but his pulse rate continues to climb despite the blood transfusion. The registrar knows that she would rather her supervisor was here. But then she reflects – this is what independence is about. Coming out of your comfort zone, absorbing the stress, dealing with the situation, making the decisions, …enlarging that zone… making yourself better so you can treat the next patient with even greater confidence and skill. But what if that process involves putting this frail man at risk? She readies herself for the next part of the procedure. She knows that if this goes well she will emerge from that room a better doctor.

The scenario can now go one of two ways…

A. She injects the adrenaline and as she had hoped it has a constricting effect on the blood vessels, causing the flow to slow down. Now when she washes the blood away it takes longer to ooze back, and she can see the culprit in the middle. A raw artery that has been eroded by acid. She chooses to use the heater probe and asks the nurse to make it ready. She passes it down the channel of the endoscope until she can see it emerge on the screen. With one hand she controls the wheels on the endoscope to optimise the position, and with the other she presses the heater probe onto the vessel. Then, with her right foot she presses a pedal on the floor and sends electricity into the probe, creating a tiny zone of intense heat until the vessel is ‘cooked’. Thinking that she has sealed artery she pulls the probe away. But the bleeding is even worse now. She must have torn the wall away. Quickly she calls for a clip and the nurse passes her the kit. The registrar pulls out the heater probe and quickly, calmly, replaces it with the clip delivery device. Soon she sees the metal jaws, grossly magnified, floating around the field of scarlet on the TV screen, and although the view is flooding with blood again she can still glimpse the artery. Before the window of opportunity has passed she pushes the clip onto the artery and asks the nurse to deploy. The clip closes down on the artery and stops the bleeding immediately. The field clears and she places two more clips above and below. The patient is stable.

“Well done,” says the nurse “that wasn’t easy. You could tackle anything now.”

B. She continues to wash away the blood, but the view is terrible. She injects adrenaline and it slows things down, improving the view. Now the time is right to use the heater probe. She places its tip on the ulcer, right on the vessel that is spurting blood, and presses the pedal. The heat dissipates into the pool of blood, and makes little difference. She knows that a clip is the next best thing, but she needs a better view. She readies the clip, and through the other channel of the endoscope she squirts more water. The view improves and when the time is right she deploys the clip. For a while she thinks that the job is done, she sighs in relief and smiles at the nurse, but 30 seconds later the bleeding erupts again and all views are lost. She takes out the camera, bleeps another member of staff to come and help look after the patient, and rings a surgeon. He arrives quickly, but argues that the patient is too frail to undergo an operation. The registrar argues back, saying that she can do no more within the scope. They debate the pros and cons of various other treatments, and in the end agree that surgery is the only hope. The patient is anaesthetised and in the operating theatre 40 minutes later. The ulcer is located and sealed. But he does badly after the operation, and develops a chest infection. He remains on a ventilator, and in the end, seven days later, dies.

The registrar describes all this to her consultant. From the description he can see no reason for her to blame herself.

“You did fine.” he says, “You knew when to give up, that’s half the skill.” He doubts that his presence would have made much of a difference. But the registrar knows that the patient’s greatest chance of survival would have been afforded if he had not had to have an operation, if the most experienced person had been there to treat the ulcer…if she had not proceeded on her own.

*

As a trainee approaches the top of a learning curve the moment comes when they have to decide if it is safe to go it alone – the cusp. The patient who comes into hospital on that day will have no idea that they represent a significant moment in the career of the doctor who is called to perform their procedure. They will have no idea where they lie on that learning curve, or that they might form a stepping stone to independence and immaturity. This would not matter if their risk of harm was no greater than that of any other patient having the procedure. But it is the result of this risk analysis that forms a perfect example of how we balance individual risks versus societal benefits in medicine.

The concept of the learning curve was introduced to many members of the public in a horribly vivid way during the Bristol Heart scandal. One of the paediatric heart surgeons involved said,

“I believe that the reality of the learning curve may be illustrated by the evolution of surgery for transposition of the Great Arteries in this country … in the late 80s and the very early 90s it was generally understood and accepted that when a unit introduced the Arterial Switch operation for neonates there would initially be a period of disappointing results.”

I am not concerned with such extreme examples here, but the essence pertains. In order to achieve complete expertise it is necessary to accept a degree of ‘trial and error’. Or is it?

*

A thorough enquiry into this subject was undertaken by a US paper, the Dallas News, following controversial reports coming out of Parkland Memorial Hospital, the primary teaching institution of University of Texas Southwestern Medical school. This hospital seemed to take a liberal attitude to the surgical training, crediting its juniors with autonomy to proceed with many operations unsupervised.

One faculty supervisor who quit in protest said the mainly poor, minority patients of Dallas County’s only public hospital had effectively become “clinical fodder.”

Apparently,

The head of UT Southwestern’s general surgery residency program once said it was “OK for residents to make mistakes” on patients “even if they could have been avoided with better faculty supervision,” according to notes taken by a faculty surgeon and later included in court records. Tim Doke, UT Southwestern’s spokesman, challenged the accuracy of that account. But Anderson has testified that some faculty believed “that’s how people learn,” though he said he disagreed with the philosophy.

In this case (and the newspaper report makes excellent reading, as does this graphic summarising mortality), one supervisor became uncomfortable, and complained after he was called into a gall bladder operation too later, after a irreversible damage had been done to the bile duct.

This controversy crystallises an ethical dilemma in medical training. As the journalists put it, “There’s good for the patient, and there’s a societal good. We can’t exist as a society without physicians learning on the ground.”

A questionnaire study published in the BMJ found that 86% of surgical trainees or young consultants had performed procedures for the first time without direct supervision. This appears to be the reality of medical education. Attempts have been made to resolve the dilemma, another BMJ paper seeking to lay out a framework based on respect for the individual, beneficence and non-maleficence. In their introduction Jagsi and Lehmann explain that…

The burdens of medical education are not currently distributed fairly. In one US study, students saw disproportionately high numbers of non-white patients and patients with Medicaid (public insurance for the indigent).Another study found that children of doctor parents were less likely to be seen by trainees than were other children.

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Immanuel Kant (image from Wikipedia)

However, the approach laid out in this paper does not really equip trainees with a practical method of making decisions on the spot. Another paper (Journal of Medical Ethics) approaches the problem by applying Immanuel Kant’s Second Formulation of the Categorical Imperative,

‘‘Act so that you use humanity, as much in your own person as in the person of every other, always at the same time as end and never merely as means”

In reality however,

This conflict arises because, at least presently, medical practitioners can only acquire certain skills and abilities by practising on live, human patients, and given the inevitability and ubiquity of learning curves, this learning requires some patients to be treated only as a means to this end….Accordingly, until a way is found to reconcile them, we conclude that the Kantian ideal is inconsistent with the reality of medical practice.

To resolve this conflict,

…supervisors might undertake to delegate only under conditions where they can be as sure as possible that the procedure would be done as well as they could do it themselves. If this assurance can truly be given by the supervising doctor, then the conflict is solved.’

 

This seems unrealistic. So are the patients who take their place on our learning curves nothing more than a means to an end? The paper begins with a quotation from Atul Gawande’s book Complications: a surgeon’s notes on an imperfect science

‘To fail to adopt new techniques would mean denying patients meaningful medical advances. Yet the perils of the learning curve are inescapable—no less in practice than in residency’

Le Morvan and Stock seek to challenge the perception that patients are guinae pigs in four ways;

1) Discontinuing unnecessary use of patients without consent – they suggest that we introduce a consent process where possible. The example of pelvic examinations by students on anaesthetised patients is one such example.

2) Continuing to develop medical simulation models

3) Enhancing supervision, but…”We are sceptical that such an approach, applied stringently, is practical for all procedures. It is hard to imagine—for example, that an experienced surgeon can honestly say that his trainee’s first liver biopsy will be performed just as well as he would perform it himself. Moving in this direction, toward a more conservative educational model, would, however, reduce the extent to which patients are used as means only.”

4) Changing expectations, or universalising the problem. If the involvement of trainees is taken into account when the statistical outcome from a procedure is calculated, patients waiting for that procedure are not actually being disadvantaged by having performed by a trainee. This argument does have a whiff of sophistry about it, but I have found myself using it before. As a patient and a parent I would want the hospital’s best qualified person to treat me or my children (although I am probably too polite to demand as much), but as a trainee I often muttered to myself, in response to a patient’s underwhelmed expression, “Look, either I do this procedure or it’s another five hour wait…what will it be?” As the authors conclude,

It does, however, offer a useful way of approximating this ideal in light of the constraints imposed by the reality of medical practice.

I don’t think there is a way of truly resolving the Kantian conflict unless our patients accept that it is not possible to always see the most qualified person in the institution. But the deal must be reciprocated by trainees – they must ensure that every single clinical interaction is approached not from the point of view of ‘polishing their resume’ (as the Dallas News article put it), but from the point of view of the patient. The trainee may well be on the cusp, there may be a theoretically increased risk, but if the skills are embedded, if the trainers have given their blessing, if they feel ready on that particular day or night…no more can be asked.

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“It was as though I wasn’t there”: the problem of the invisible patient

The CQC has published the results of its 2012 national in-patient survey. Some aspects of it were picked up by the Independent newspaper on 16th April 2013. One of the observations in the ‘Doctors and Nurses’ section is that:

There have been improvements in the results for questions asking about doctors and nurses, with the majority of respondents saying that:

Doctors (75%, up from 73% in 2011) and nurses (81%, up from 78% in 2011) did not talk in front of them as if they were not there.

 

What is the explanation for the other 25% who feel that their doctors did talk as though the patient wasn’t there?  

1) The doctors thought the patient was not listening, or not able to comprehend what was being said…but they were wrong.

The only way to avoid this would be never to speak to a third party (usually a colleague, often a relative) over a patient, even if they appear unconscious or severely impaired cognitively. That seems a sensible rule of thumb…but go to any intensive care unit and you will see very open discussions, concerning life and death, just feet away from sedated patients. It happens. Clearly, as medical practitioners, we are prone to falling into the trap of underestimating the degree of cognitive function in patients who appear, externally, to be unengaged with their surroundings.

 

2) The doctors conducted technical, impenetrable discussions with colleagues without taking in account the patient’s bewilderment.

Here I would like to mount a defence of doctors. On a ward round there are several tasks that have to be achieved. Most, but not all, can easily be followed by a non-medically trained person.

  • Greeting and introductions
  • Ascertainment of the patient’s current symptoms, feelings and concerns,
  • Confirmation of what has occurred thus far during the admission
  • Physical examination if appropriate
  • *Review and scrutiny of medical investigation
  • *Interpretation of above data
  • Agreed plan (in context of patient’s goals)
  • Communication of that plan to the patient

 

  • *Additionally, there may be opportunities for teaching.

 

The starred (*) elements may, in my view, evade the patient’s full understanding. This is because the language used will contain technical terms, Latin or Greek derived terminology and a cascade of acronyms. I experienced an example of this recently – there was patient with ‘the best bronchial breathing you’ll ever hear’. I explained to the patient that he had signs of pneumonia, asked him if the FY1 (the most junior doctor) could listen with her stethoscope, and had the following discussion with her and the team:

            ‘What did you hear?’

            ‘Loud breath sounds.’

            ‘How did it compare to the other side?’

            ‘Louder.’

            ‘Just louder?’

            ‘Different.’

            ‘I would say clearer.’

            ‘Yes, it was.’

            ‘And do you know why?’

            ‘The lung is solid…’

            ‘And that’s called….?’

            ‘Bronchial breathing’

            ‘Yes! Well done. And then you might look for other signs such as increased vocal resonance, vocal fremitus, signs that the sound waves are being transmitted through solid lung rather than open alveoli…you might see air bronchograms on the chest x-ray…Mike, what was the white cell count and CRP?”

            “12.8 and 87.”

            “Strep antigen, has that been sent…”

            “No. But he’s on Co-Amox and Clary…”

 

And it’s moved completely out of the patient’s sphere of understanding. I look down, aware that we have progressed onto discussing his laboratory results, and treatment…the mini-teaching session has segued into person-specific details, and the patient does not have a clue what we are talking about. If he was asked to comment on a survey he might well say, ‘They talked as though I wasn’t there!’

 

How do we avoid this? Vigilance. Being aware that every single word uttered will be heard and reflected upon by the patient. Any unguarded word. Comparisons with other, historical patients (‘…you remember the man we saw last week, on intensive care, he had the same signs…) may lead the patient to fear that they will follow the same course. Mentioning a theoretical differential diagnosis (‘…this could be tuberculosis, or a tumour can cause compression and distal collapse…’) will cause them to dwell on all the terrible possibilities. It’s just not possible to talk ‘freely’, even though there may be a purely medical justification in considering other diseases or treatments.

 

Two solutions to improving our conduct during those starred sections are:

            a) always use non-technical language

            b) move away from the patient’s bedside.

 

There are problems with both in my view.

 

a) efforts to avoid technical terms during conversations with colleagues often result in a pseudo-medical, strained and patronising tone, or in asides that contain semi-interpretations . For instance, ‘…we mean the lung has gone solid, from the pus in the air-sacs…it’s a normal finding, in pneumonia…fremitus, that means the sound vibrations are felt on the skin…’. Many patients would actually appreciate such interpretation, as it provides an insight into their own condition. Within reason I would support it, but, to be honest, it is the student or house office we are trying to teach about physical signs, not the patient. Certainly in communicating the interpretation and plan such non-technical terms must be used, but in their right place I think the ‘code’ that doctors use is necessary.

 

b) moving away can be cumbersome. It may also give the wrong impression, that something more grave is being discussed in secret. Afterwards, the team must go back to the bedside, so an additional awkward phase, wherein the team trundles off to the corridor or nurses’ station and then trundles back is introduced. To do that with each patient on a 30 patient ward round is probably unfeasible.

 

We must find a way of making the patient feel involved while having a discussion that they cannot truly be involved in. This is a demanding expectation. Clearly, in 75% of cases, we achieve it. Perhaps it is in those cases where alert and interested patients with complex and subtle problems that seem to require prolonged technical discussion make up the other 25%. In these cases the acronyms and the secret codes go on and on, interspersed with concerned glances back to the increasingly concerned patient in his or her physically inferior position on the bed…followed by a brief, concluding summary that reminds the patient of one of those comedy sketches where a dishonest interpreter transforms a 90 second string of Chinese into a two word English phrase. It’s all about sensitivity and empathy in the end.

 

My take home message would be – Yes, sometimes it is necessary to talk in a way that will not be fully understood, but make sure the patient is forewarned about those portions of the visit, and make sure you check that their degree of comprehension has been addressed with a suitably clear interpretation. And don’t leave without checking that their questions and concerns have been dealt with.

Memory failure after medical error: the building blocks of experience

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There is a contradiction in medicine that has always interested me – the need to form a complete psycho-social picture of each individual patient (aiding empathy) versus the need to depersonalise, categorise and store their medical story (thus adding to experience). When things go wrong, this tension results in a paradoxical lack of humanity.

Example: a junior doctor, two years qualified, makes a mistake. She writes the wrong antibiotic up on a Friday afternoon, having failed to check the result of cultures that were taken three days before. The bacteria causing the infection is not sensitive to the antibiotic that she prescribes. The patient deteriorates. The doctor recognises and regrets her error, watches the patient and his family, learns all that there is to know about his life and background. He dies two weeks later (his death the result of mutiple diseases, not just her action). She is devastated. For days and weeks she reflects on her mistake. A vivid image of the family keeps entering her mind, as do their words, when they asked how a simple urine infection could make someone this ill. Moreover she checks the computer assiduously before prescribing antibotics from then on.

Twelve years later she is asked to deliver an induction lecture to new doctors. She emphasises how important it is that they check each result for themselves, take nothing for granted…watch the details. She is a very careful doctor, always was really, except for that one slip which happened early on. She drives home…and casts her mind back to the moment she learned that her patient had grown worse over the weekend, due, in part, to her brief incompetence. She finds that she cannot remember his name. She cannot form a picture of his face in her mind’s eye. The family…how many were there? The man has gone…only the error, and the lesson that grew out that error, remains. The individual has been subsumed by history, by a thousand other patients with a thousand different problems.

We cannot be expected to remember every patient, of course. But those who made the greatest impressions on us might, you would think, linger on in our memories. Indeed they do, but mainly in the form of salient facts – the features and factors that made them special, be they medical, situational, or personal. Their memory survives as a construct that exists only in relation to the effect it had on you, the doctor, rather than the self-contained, individual and tragic story that the patient’s demise truly signified in their world…a world that you, as their doctor, were never really a party to.

It is a subtle and rather esoteric observation, I admit it, but for me it feeds into a larger question. How do doctors ‘process’ the memories of patients who once presented a great medical or personal challenge?

A mature doctor will have been buffeted and battered by numerous ‘bad outcomes’. That cold phrase describes unexpected injury, suffering or death of patients related to decisions or treatments ministered by us, their doctors. Those outcomes may have been inevitable, but the fact that they occured after we saw them and gave advice forms a link in our mind. Was it something I did? Should I have made a different decision? Was I wrong? And if I was wrong, what will I do differently next time? A lesson is learnt, and each little shock, each piece of bad news, adds to the pattern of experience that forms the value of a good doctor. We carry those lessons around with us, making sure that next time we encounter a similar situation we do not make the same mistake. We get better, and feel more confident. The price – a series of personal tragedies that become smaller and smaller in our memory as time passes. All but the most harrowing (or perhaps those that resulted in sharp criticism or proessional censure) lose their emotional edge. We recall the events in abstract – ‘I did this, this happened, he died, I felt awful…oh yes, I don’t recommend it, don’t ever do that…’ – but we are no longer visibly damaged. In fact we are wiser and stronger, and at some level perhaps we are grateful for having been through it.

My point is that the lifelong process of learning that is a medical career requires us to find a way to live through these setbacks and make something positive out of them. To do this doctors must strip those memories of the very qualities that made them so powerful in the first place…the patients’ suffering and the impact this had on those around them. The lesson learnt is usually one of process, data interpretation, practical technique or communication…whatever it is it is something to do with the doctor. It is the doctor who is the constant, whereas the patient, even though their specific needs and problems formed the basis of the risk, is one of many who will cross that doctor’s path.

So is all this a problem? It is if we become too good at the process of assimilation and are tempted to put each mistake ‘down to experience’ too soon. It is if we do not dwell sufficiently on the impact of mistakes that, from a medical point of view, were purely ‘technical’. It is if we immediately compartmentalise those errors, surrounding (or hiding) them in hastily erected walls of rationalisation, forensic examination and (instinctive) defensiveness, thereby underplaying their social significance. I wonder if such post-hoc failures of imagination and empathy that can lead to a lack of candour. When errors are immediately assessed in relation to the system that caused them rather than the social unit, the family, that was most directly affected by them, we are in effect turning away from the pain and settling our gaze on our own concerns. That has to happen of course, if weaknesses in the system are to be adressed, but the timing and the emphasis have to be right.

Personally, as a doctor who has been blown off course as frequently as any other, I think depersonalisation and abstraction are vital. They are not particularly warm or human traits, but they are understandable. The process of learning from experience must be the same for doctors as it is for any other professional, and the same need to filter, discard and retain the ‘essence’ of each incident applies. The difference, for doctors, is that the extraneous matter is often deep emotion and human pain.

Why Michael didn’t blow the whistle: pub scene

 

In this imagined scene I explore the reasons why junior doctors rarely blow the whistle on poorly performing senior colleagues. I have not been in this situation, and the words I place in the mouths and minds of my protagonists are based on supposition. Of course, real whistleblowers would be able to shed a more penetrating light on this dilemma. Their descriptions would have far more validity. But many junior doctors will have observed poor practice, and they will have considered the question – should I tell somebody? Perhaps this post goes some way to explaining why they hardly ever do.

Readers of this blog will know my methods – I take the true essence of a problem and enlarge it in my imagination. I do not pretend to justify actions or omissions here. It is merely an attempt to explain how people think.

oOo

A junior doctor called Michael observes that his consultant, Doctor G, has made what he believes is the wrong diagnosis on three separate occasions. Michael thinks he has detected a pattern of medical inadequacy. The first time, Dr G failed to detect or interpret the signs of early septic shock on a post-take ward round. Two hours later the patient was in intensive care, on quadruple strength noraderenaline, having been transferred in a state of peri-arrest. On the second occasion an elderly patient with leg weakness was assumed to be ‘off legs’ due to a urine infection, but the following day, after the man had been examined more thoroughly, a spinal cord tumour was found on an MRI scan. He was rushed to a neurosurgical unit for emergency decompressive surgery. And on the third occasion a patient with liver cirrhosis was, in the view of the junior doctor, written off without serious consideration being given to organ support and transfer to the intensive care unit.

 

Michael brooded on these examples. One evening he begins to moan about Doctor G in the pub. He relates the three incidents. His friend, another doctor, nods with common feeling. Michael realises at once that this consultant had an established reputation, a bad one, among other juniors .

 

“So what has been done about it?” he asks.

“The guy’s been there for years, he’ll be retiring in another couple.” says his friend.

“So?”

“He trained in a different era. Half the diseases and treatments that we see now he didn’t even learn about.”

“That’s no excuse.”

“What do you expect the trust to do?”

“Take him off the rota. Patients are being exposed to him every week.”

“And what would that cost? They’d have to employ another consultant.”

“Does it matter?”

“No, of course not. But can you prove that he has actually caused a patient to suffer or die.”

“Well we have just discussed cases where that has obviously happened. I can’t believe nobody has ever said anything.”

“So are you going to do it? Whistleblow?”

“I’m tempted to. Who should I talk to?”

“You’re educational supervisor. That’s who I would go to. Is he friendly, your supervisor?”

“She’s a she. A surgeon. I’m not sure she would have a strong opinion on the medical detail.”

“It doesn’t matter. She doesn’t have to. She just has to acknowledge your concern. She’ll have an obligation to go up the chain. What about the GMC?”

“What will they do?”

“I’ve heard there’s a hotline they’re setting up.”

“You know what I think would happen if I told them?”

“What?”

“I think it would ruin my life.”

“Why?”

“Because for the rest of my time here I would be thinking about what was going to happen.”

“In what way?”

“Well…I’m sure they would be discrete, but they would need evidence from me. I would have to provide            some reports or they would have to come down and find them. That would become the focus of my life. Makes me feel ill thinking about it.”

“We had something like this on the ethics station in our exam. If there
was a real, imminent risk of patient safety the answer was easy. You have to remove the doctor from the clinical environment.”

“Yes, but that was for doctors on drugs, or drunk .”

“What’s the difference? A danger is a danger. If you really think he’s a danger then you should go to someone. The medical director or something like that?”

“Didn’t you work out with them a while back? Didn’t you notice anything?”

“Yes, I thought he was crap.”

“So did you go and speak to anybody?”

“No. He wasn’t that crap.”

“But now you know, having spoken to me, that he is that crap. We agree. I’m sure if there were a few others in here we’d all agree. Shouldn’t we all do something about it?”

There is a silence. What is going through their minds?

Perhaps this: it was not clear to either that Doctor G was a genuine danger. For prior to their arrival in the trust, just two and half months ago, this doctor had been employed for over 20 years without serious complaint. So why should it come to them, these young doctors at the beginning of their careers, to raise the alarm? Surely, if no-one else had detected his deficiencies it was more likely that they were wrong.  Perhaps their inexperience had led them to misinterpret the things they had witnessed. There was more to medical decision making than they currently understood. It was more subtle than right or wrong…

 

And after all, did those patients really suffer more because of Doctor G’s decisions? The man with septic shock recovered eventually. The liver patient, a dyed in the wool alcoholic, was always going to die anyway. The intensive care docs were bound to have said no. And the patient with the spinal cord tumour was making a slow recovery; those extra hours without a diagnosis had not rendered him permanently paralysed. You could argue that it was responsibility of the A&E staff, or the admitting medical registrar, to examine him more thoroughly and detect the tell-tale sensory level. Can you expect consultants, who see each patient for ten minutes after they have already been the hospital for up to twelve hours already, to make every diagnosis, to make no errors? And hadn’t the consultant seen another 15 patients on that post a ward round, making the right diagnosis and the right decision for the overwhelming majority?

 

Michael begins to feel better, more settled. The dangers, to himself, melt away a little. He isn’t betraying his patients’ trust by avoiding the confrontation. Doctor G is different. He has strengths… and weaknesses. Clinically suspect, perhaps, but part of the old guard. And, when it comes down to it, Michael is pretty sure he does a lot more good than harm in the hospital.

 

“Where do you rotate to next?” asks Michael’s friend.

“Ortho.”

“Life might be a bit more straightforward there.”

“I know it will.”

“ Two weeks.”

“Head down mate.”

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“Challenge everything”: A junior doctor questions the LCP

When a new junior trainee attended for his first clinical supervisor meeting I asked him to challenge what he saw on the ward, and not to be afraid to slow down the pace of things if he felt that his patients’ needs were not being met. A week later he stopped the ward round to ask me why an improving patient was still on the Liverpool Care Pathway (LCP). In the ensuing discussion we pulled the LCP apart and put the pieces under a microscope.


The patient was 89 and had advanced dementia. She had been living in a residential home, requiring assitance with most daily activities, and was admitted following a fall with signs of a chest infection. There were also features of significant malnutrition. The home reported that she had been eating less and less there. Despite treatment with antibiotics and fluids for 5 days she deteriorated and stopped eating completely. When she tried to drink, liquid tended to tip into her windpipe and cause her to have further breathing problems. She could not cooperate with physiotherapists and the nurses stopped helping her into the bedside chair. She could no longer communicate, but appeared uncomfortable if she was not in bed. She just lay there. On one occaasion ger temperature was found to be 34.8 degrees C (markedly low), even though the infection had been treated. I decided that her dementia had progressed, and that she was now dying.


We discussed the LCP with her son and discovered that he knew all about it. He agreed that the time had come to concentrate on comfort. The paperwork was completed. Two days later, on the next consultant ward round, we found her sitting up, relatively alert, and able to tell us that she was hungry and thirsty. I thought carefully about whether to take her off the LCP but decided that she should remain on it, with daily review.  The speech and language therapist was still concerned that should she drink there was a risk her lungs would be contaminated, but I asked the nurses to give her thickened fluids if she asked for them. The house officer wrote in the LCP booklet, looked at me quizzically, and asked –  

 

Why is she still on the LCP?

That is a very good question. It’s not uncommon for patients to appear to rally after a few days, on no treatment, and it’s a real challenge to know how to respond.

She seems to have improved. Shouldn’t we treat actively again?

We have to ask ourselves – does this improvement represent a genuine reversal in her medical condition?

But she has improved.

She has rallied yes, but has her underlying condition actually reversed?

Well, she was moribund, but now she is talking.

But look at the amount she’s eating and drinking. Close to zero. Not enough to sustain life. So, really, she is at the place she was a few days ago just before she became completely unresponsive.

But isn’t there a chance of further improvement?

We can’t expect her to become better than she was after her infection was treated. At the moment she is alert but she cannot eat or drink enough to sustain life. So we have two ask ourselves what we would achieve for her by escalating her care again. If we put a drip back up to give her enough fluid to survive, what are we expecting her to do?

Couldn’t we could try to get her back to the home, after a few days of building her up?

But we know that whatever we do she is unlikely to ever be able to eat or drink enough to survive in the medium term. It is her dementia that is doing that, and her dementia is truly irreversible. Should we feed her artificially? Well, if we give her extra fluid now, or a nasogastric feeding tube, we will sustain her life for as long as we choose to continue those treatments. But at some point we are going to have to withdraw those treatments.

Why?

Because it is not possible to send a patient with such severe dementia home on an intravenous drip or with a feeding tube in place. A drip means you have to be in hospital. A feeding tube is positively dangerous if you are confused and don’t understand why you have it…which she wouldn’t.

What about a PEG tube? [a feeding tube inserted directly into the stomach]

That is a good question, but we know from large studies that even inserting a PEG tube and guaranteeing sufficient food intake does not extend life or stop things like bedsores or infections. It seems counterintuitive but it is true.

But I don’t understand how we can ignore her improvement.

I know it’s difficult. But I feel that even though she appears to have improved her prognosis has not changed. She truly has end stage dementia and although the signs of dying that we saw a few days ago do not seem to have evolved, the situation is essentially unchanged. She is still a lady with advanced dementia who cannot take enough sustenance to survive.

So you think she is still dying, even though she…has improved?

I do, although perhaps not in the time frame that we anticipated. But if we now reverse our decision, put a cannula in, or a feeding tube, we will undoubtedly lengthen her life, but we will not change anything fundamentally. So now we have two make sure that her family are prepared for it, and do not challenge our perception that she is truly at the end of her life.

So while we do that shouldn’t we take her off the pathway – shouldn’t we make the assumption that life should be preserved? Isn’t that our primary role?

I did think about that…about taking her off it while we discussed with the family. But is it right to chop and change if this improvement is really only a temporary thing?  We must have the courage of our convictions when it comes to the diagnosis that we have made. You are responding to the evidence that she is now more alert, and assuming that this represents a genuine improvement in her medical condition. I on the other hand still feel that she is in the terminal stage of her dementia. Now you could accuse me of forcing fate by continuing to withhold hydration or food because in that way her ultimate death is almost guaranteed. I understand that point of view. It is an accusation commonly levelled at doctors who use the LCP. I would counter that by saying that if we now reverse our policy, we will be able to keep her alive in the short term, but it will be an artificial situation. It will be entirely dependent on the fluids (or tube feed) that we are giving. But then, at some point, we need to think about the next step. Staying in hospital forever is not an option. So be it her home or a nursing home, she will not be able to take in enough food or drink. As soon as she leaves here she will become dehydrated, and will begin to die again. So the life that we maintain here with our invasive treatments is not a fair reflection of her ability to survive. And it cannot go on forever.

So it’s up to us to decide when she can die?

Perhaps. It is up to us to recognise when her dementia has advanced so far that it is incompatible with survival. It is our job, before that, to ensure that there is nothing more acute going on – like an infection – which can be reversed.  And once we have ruled out or treated reversible causes we need to be honest with ourselves, with the family, and with the patient –  if they are  able to understand us.  We need to be clear that she has entered a terminal phase. Is it not better to accept that and discuss it openly and make arrangements for a comfortable death, or for some time at home with community palliative care, rather than maintain her life artificially and hold out for some more fundamental improvement that we know will not take place.

But sometimes we are wrong.

We were wrong here. I thought she was going to die in the next day or two, and here she is engaging and talking. But I don’t think I was wrong about recognising her still very poor short term prognosis.

And what if the family have the same reaction that I did and think that she should come off the pathway?

Then we have some explaining to do and some careful judgements to make. But at some point we have to test her ability to survive on her own, and it will then become clear. There are some other options. We should get a member of the palliative care team to give another opinion. And we should consider the option of discharging her off the LCP, and asking her GP to consider end of life care in the community if she deteriorates as we think she will. We review her tomorrow and if she has improved even more then of course, we will change tack. Are you happy? Do you agree?

I…

You’re uncomfortable. That’s good. If you become too comfortable around death you stop asking questions of yourself. I did ask you to challenge everything…you were right to.

 [identifying details have been changed]

The Evolution of Authority: Confidence vs Arrogance

The journey from timid trainee to clinical leader is rarely a smooth one, and authority does not come easily to all. Lessons learnt from inevitable missteps can be as useful as the positive accumulation of knowledge and skills. By looking back at formative moments in a fourteen year career I have tracked the evolution of my own authority…and in doing so I have recognised that near the end of the path lies a trap, and it is called arrogance.

 

As a Senior House Officer, in conversation with my Registrar.

Registrar: “And you think the bronchospasm is what, pulmonary eosinophilia, due to migration of parasites? Why doesn’t he just have asthma?”

Me: “It’s just…this patient has made no improvement after five days. We’re getting nowhere. His renal function is off. Either an unusual infection, or something else…perhaps autoimmune, vasculitic. Shall I ask the rheumatologists to see him?”

R: “He’s a bit dry, that’s all. Speed up the fluids and his kidneys will turn around. The prednisone will kick in soon. Don’t worry.”

 

Next day – a SHO detains me in the corridor 

SHO: “I hear your man was transferred to intensive care.”

Me: “I’ve seen him. Blew a pupil, dropped his conscious level. I don’t understand, it doesn’t add up.”

SHO: “But you’ve heard what the diagnosis is?”

Me: “No. Not yet. Tell me.”

SHO: “Churg-Strauss syndrome. Classic presentation. ICU called the rheumatologists in. But he’s pretty far gone now, on dialysis…they’re starting cyclophosphamide this afternoon. You look shocked.”

 

A few years later, with some specialised knowledge under my belt, I felt confident in challenging error where I saw it developing…

 

In the intensive care unit, a Specialist Trainee greets me.

ST: “Thanks for coming down. Her liver is fine but her ammonia is off the scale. Very odd. Epileptic, but the EEG says she’s not in status. CT scan is normal”

Me: “Does she take valproate? An overdose would explain it – it interrupts the urea cycle.”

ST: “Yes. We figured that. But she hasn’t woken up on the filter. Have you got any ideas?”

Me: “I’ve had a look at her. She has signs of raised intracranial pressure. Clonus, sluggish pupils. She’s at risk of coning. At the moment you have no handle on the pressure, nor how aggressively to treat it. She needs a bolt.”

ST: “An intracranial pressure monitor?  Really?”

Me: “Yes, the neurosurgeons will put one in if you call them.”

 

Later that day

Me: “Did the neurosurgeons come down?”

ST: “No. We didn’t think it would add much.”

Me: “But it would…you have no idea what’s going on in her skull.”

ST: “But the treatment would be the same anyway. And besides, there’s no evidence of a survival advantage…”

Me: “Evidence is lacking, you’re right. But this situation is rare, the trials will never be done. Look, you asked for my advice, and I’ve given it to you.”

ST: “We’re not convinced…it’s a risky intervention…”

 

How far do I take this? I’m convinced it’s the right thing to do. How hard should I fight for what (I think) I know is the right decision?

Me: “This woman is at huge risk of brain death, and without quantitative assessment of the pressure you cannot treat her appropriately. If the pressure is persistently high after mannitol you’ll need to try indomethacin, consider a thiopentone induced coma, cool her right down. Where’s your
consultant? Who do I need to convince to make this happen? You clearly don’t have the experience in this unit to make the right decision.”

 

But I did not say that. I figured – it’s their decision, their responsibility in the end. I gave an opinion, one of many probably, and they must assess the pro’s and con’s before making the call. They may have a better understanding of the whole situation. So I said,

“I’ll review her first thing tomorrow. That will be 24 hours since she presented. If there are persistent features of raised pressure I think you’ll have to do it. Ask the neurosurgeons for their advice. You have mine.”

 

She never woke up. No-one can be sure what difference the bolt would have made.

 

Two years later I found myself arguing over a patient whose heart had stopped.

 

Me: “Another cycle, and then I think we’ll stop. There’s been no electrical activity since we started…all agree?”

The cardiology Registrar enters the cubicle pushing a portable echocardiography machine.

Cardiology Registrar: “I’m just going to take a look, see if there’s any ventricular activity.”

Me: “We’re just about to call it. She’s dead, unfortunately. We’ve been going for 20 minutes in asystole.”

CR: “You haven’t excluded all reversible causes yet. What about tamponade?”

Me: “There’s no reason to suspect tamponade, no instrumentation, anticoagulation, no electrical activity on the monitor…”

CR: “It will only take a couple of minutes. My consultant will want to know before you stop resuscitation.”

Me: “What! No! I’m running this arrest, we’ve given four shots of adrenaline, and the line is flat. She is dead. I’m not going to have this woman subjected to another 10 minutes of CPR while you do an echo and go and call your consultant.”

CR: “It’s protocol on the cardiology ward.”

Nurse: “That’s two minutes.”

Me: “Okay, what’s the rhythm…asystole, not compatible with a pulse. Let’s stop. Stop compressions.”

CR: “I’m calling my consultant.”

Me: “Do so. At no point in the life support algorithm does it mention echocardiograms and phone calls to consultants. We’re stopping.”

 

I walked away, emboldened by the challenge. Assuming authority in this situation had come easily. I felt that I had risen to the challenge, and proved my seniority.

 

Two weeks into my job as a consultant I conducted a ward round.  A new patient, with alcoholic cirrhosis, had been transferred to the ward.  My SHO presented him.

            “He’s been triggering all night, low blood pressure.  Down to 80 systolic.”

            “He’s septic you said.”

            “Yes, spontaneous bacterial peritonitis, confirmed.”

            “He’s passing urine, he looks alert. Lactate’s normal.  Give him more time, he should skate through without needing vasopressors.”

 

Later that day my SHO found me in endoscopy.

            “He’s not picking up.  We’ll need to adjust the alarm parameters if we don’t want to be bleeped about his BP every thirty minutes.”

            “This is
what cirrhotics do, run low BPs, dilated circulations, even without sepsis.  A bit more filling, another couple of days of antibiotics and he should turn around.”

 

Next morning she came to my office; the registrar was away.

            “I’m worried.  Sodium’s down, BP is still poor.  And he’s got a rash, all over his trunk.  It’s blue.”

            “But he’s talking, reading the paper, walking to the toilet.  I passed him on the ward this morning.  I’m not too concerned about him.”

            “But he’s just not right…”

            A brief stab of annoyance interrupted my continued reassurances – yes, we’re all worried about him, but get on with it!

 

On the third morning I was called to the ICU.  My patient lay dying, his skin mottled, a cardiac output monitor confirming that his heart was barely functioning.  He had been displaying signs of severe alcoholic cardiomyopathy from day one, and I had missed it. My SHO had never seen a case before, but she had sensed it, the wrongness…just as I had sensed that there must be an alternative diagnosis in the man with asthma.  I didn’t hear her, because I was sure I knew more.

 

The only doctor we can observe over an entire career is the one we see in the mirror every morning. We must reflect on our own experiences to truly understand how we have evolved –  and why. When the patient with Churg-Strauss syndrome was admitted I was no more than a wallflower during medical arguments. Now, if I am sure of myself, and if after reasoned argument I wish to ensure that the wrong decision is not made, I may display intransigence and will ultimately pull rank. For after all, I am right more often than I am wrong, and my senior position should ensure that what I say goes. Shouldn’t it?

 

Having reflected on some of the steps that led from a questioning but silent observer to a physician with the power to insist, I am reminded that the evolution of authority does not end with the progression to consultant rank. Only open mindedness, the ability to admit mistakes (to oneself if not to ones juniors), and the realization that learning occurs in both directions can prevent the sheen of hard earned authority from deteriorating into a impermeable hide of arrogance.