Scenarios and dialogues

Keeping the options open

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

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

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

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

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

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

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

“How?”

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

“It rarely happens like that.”

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

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

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

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

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

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

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

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

 

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

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

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

 

* a powerful drug infused to keep up the blood pressure

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

[Fictional scenario]

 

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

The unknown quantity

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

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

So we are guided by experience – that fickle teacher.

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

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

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

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

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

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

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

 

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

 

 

portfolio

Click image to explore all the author’s writing projects.

 

The gentle fiction

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‘Through rose tinted spectacles’, by monstercoach

 

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

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

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

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

His wife shifted in her seat.

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

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

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

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

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

I looked at him. He was looking at her.

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

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

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

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

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

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

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

 

(Details changed)

 

***

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

Guilt trips

guilt image

 

Two registrars talk.

 

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

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

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

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

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

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

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

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

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

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

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

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

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

B. They lose their jobs.

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

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

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

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

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

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

A. Nurses too? Nurses have gone to jail.

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

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

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

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

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

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

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

A. What if they were fatigued?

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

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

B. I guess I am.

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

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

A. Remove themselves from the clinical environment?

B. If necessary, perhaps.

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

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

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

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

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

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

A. You feel the chill like me then.

B. Yes.

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

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

A. Why? How can you be so sure?

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

 

***

 

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

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

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

 

Notes:

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

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

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

The test involves the following stages:

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

Why did that man receive CPR? – part 3

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

“Hello.”

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

“Yes.”

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

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

We made an arrangement.

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

 

Dennis: “How can we help Dr _____?”

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

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

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

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

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

Dennis: “All patients?”

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

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

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

Pause. Dennis and Mrs Simpson look at each other.

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

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

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

Dennis: “After how long?”

Me: “Five or six minutes.”

Dennis: “That long?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Me: “I will. Thank you.”

 

Part 1

Part 2

oOo

 

three covers

Why did that man receive CPR? – Part 2

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

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

 

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

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

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

Me: What did you need to see him for?

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

Me: That’s interesting.

Dr K: What is?

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

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

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

Dr K: He wasn’t that ill!

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

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

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

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

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

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

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

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

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

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

Me: A ‘bad feeling’. What is that?

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

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

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

Me: But I thought you of all people…

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

Me: Where do you suggest I look?

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

 

Coming soon – Part 3, the family

See Part 1 here

oOo

Why did that man receive CPR? – an imaginary inquiry

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

 

The Emergency Department SHO:

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

 

The clerking medical SHO:

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

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

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

Me: ‘But he arrested, didn’t he?’

‘Unexpectedly.’

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

‘So you think I should have asked him?’

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

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

 

The consultant on the post-take ward round

Me: ‘Can I have a minute?’

‘Of course.’

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

‘Oh.’

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

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

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

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

Me: ‘Were the family there?’

‘No. Definitely not.’

Me: ‘So he had deteriorated.’

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

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

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

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

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

 

The crash team registrar:

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

Me: ‘Obviously?’

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

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

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

Me: ‘Don’t blame yourself.’

 

Later… the AMU consultant catches me in the corridor:

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

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

‘But is it cruel?’

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

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

Me: ‘By definition…’

‘… and unfeeling. He was not hurt.’

Me: ‘And what of dignity?’

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

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

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

Me: ‘Until it happens.’

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

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

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

 

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

 

three covers

ABCDE…X – hierarchy and lost opportunities

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

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

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

oOo

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

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

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

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

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

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

Another day, another way…

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

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

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

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

“What do you mean?”

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

“Er…not really.”

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

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

“Tell me about it!”

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

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

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

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

oOo

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

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

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

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

oOo

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His burden

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

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

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

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

“Go ahead.” And I knew.

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

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

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

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

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

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

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

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

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

“I’m not sure they would agree.”

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

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

“Precisely. So what?”

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

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

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

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

“You worry about Lucy?”

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

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

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

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

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

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

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

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

 

oOo

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The naive detective

Medical education provides those lucky enough to receive it with knowledge that allows them to see into the lives of others. It must be wielded with care.

 

During a brief foray into infectious disease medicine, I saw my virology consultant enter the lab in a quandary. In her lunch hour (they do exist, I have seen them) she noticed some blisters in the ear of a shop assistant. The consultant looked carefully, bought her shoes, thought about saying something but in the end held back. She was sure the assistant was brewing a case of Ramsay-Hunt syndrome*, a form of shingles which if left untreated can lead to hearing loss, facial paralysis and ocular problems. She asked us what she should do. Was it any of her business? What should she say, how should she broach it? Perhaps she was wrong. On the other hand the thought that this unsuspecting young lady might go on to suffer more, and for longer than was necessary, felt intolerable. My consultant went back next day…but I never did hear what happened.

 

As I acquired medical knowledge I began to make diagnoses on the street. It was exciting. I could practise the Holmesian trick of deducing conditions and partial life stories from signs that others might overlook; rashes, palsies, postures, gaits… The young lady with an oddly shaped face, blue lips and grossly clubbed fingers who used to walk slowly along the high street – I wondered how her life had been affected, and how much time she had left to her, having been born with an abnormal heart. The boy in the local park with a large port wine stain** on his face; I reflected on the toll that an associated tendency to epileptic seizures must have had on his parents. Was that a look of strain I saw on his Mum’s face, over by the swings? Such disembodied diagnoses, and the fanciful extrapolations that followed, reflected nothing more than privileged information. They served nobody. Better perhaps not to know such things outside the hospital or surgery.

 

There are of course occasions when knowledge is helpful. Most medical students keenly anticipate situations in which they might come to the rescue in a good Samaritan scenario. I listened in awe to the story of the cardiology conventioneer who decompressed a fellow airline passenger’s pneumothorax with a catheter over a coat hanger. Now that was cool! In my case I came across a motorcyclist with folded limbs, a sore stomach and the features of haemorrhagic shock. My emphatic description to the 999 dispatcher resulted in a HEMS helicopter being called in. They wrote to me a few weeks later, and let me know that his ruptured spleen had been removed as soon as they landed.

 

Good Samaritan situations are not always so clear cut. One night, just off Leicester Square, I spotted a woman slumped in a doorway. I ran over and assessed her level of consciousness. With my girlfriend standing behind me I checked the woman’s response to pain by pressing a knuckle into her sternum. Ten seconds later she came to and screamed at me drunkenly, just as a policeman arrived on the scene. He grabbed my arm and told me to get off her. My girlfriend and I left them to it. I have since walked past many inebriated forms in the shadows of the West End without rushing to their aid. I might watch discretely for thirty seconds, just to make sure that their chest is moving, and that they have not swallowed their tongue.

 

Even the most alarming diagnoses cannot bring me to transgress the boundary of privacy. Unless the person is my patient, unless they have been referred to me, I cannot justify whispering advice into their ear, or giving them a gnomic warning. The thin man with little red stars on his face*** and a subtle tinge of jaundice, standing at the bar… I know he runs the risk of developing liver failure unless he abstains, but I stand silently by, waiting for my pint. He probably knows. He has made his decision. What would he say anyway? He would probably, and quite rightly, tell me to ‘F___ Off!’. But…but…what if he has never been told that his liver is damaged? My uninvited words might open his eyes, drive him to his GP, and start him on the road to recovery.

 

But no.

 

oOo

 

* reactivation of the chicken pox virus, Varicella Zoster, within the geniculate ganglion. Treatment within 3 days of blistering with anti-viral medication can reduce the severity of the illness.
** Sturge-Weber syndrome; a vivid facial birthmark with underlying damage to the surface of the brain on the same side.
*** Spider naevi, dilated capillaries on the skin, suggestive of cirrhosis.

 

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