Month: February 2013

Compassion in healthcare: the separation trap

The recent call for greater compassion in healthcare struck me as simplistic. Secretary of State Jeremy Hunt’s demand for more personal warmth during medical and nursing interactions came across as a bemused and impatient plea – ‘Why can’t you just…be nice!’ It was as though he could not understand why a typical doctor or nurse could be other than ever-smiling, spilling over with bonhomie, eager always to go the extra mile to make their patients’ experience of hospital as pleasant as possible. Of course, this is not the case. Why?

Healthcare professionals (HCPs) are human. They have good days and bad days. Sometimes they don’t like their jobs. And sadly, for patients, when HCPs are in a less than excellent mood the first thing to go is the soft, warm surface against which the sick are forced, by ill fortune, to rub. Underneath that surface lies the metallic functionality of a busy, hard pressed worker. Driven by a tight timetable, their day comprising a list of tasks that must be accomplished, the typical HCP will, at core, be efficient and  task focused. And when the shift ends and the time comes to hand over to colleagues, it is the lack of completion, not the absence of human kindness that should have been woven into those tasks, that will be missed.

Or have I got this all the wrong way round? The paragraph above is clearly written by a task-focused HCP.  I admit it – I have always preferred to finish a list of medical tasks than leave 20% hanging over to another day, or more likely, another colleague. Yes, even if that means the quality of those tasks is diluted, by which I mean the quality of the communication with which those tasks were framed.

So is this the choice that we present to our patients – efficiency vs compassion? It reminds me of the clichéd personality types depicted in medical fiction: who would you prefer, the brilliant and stitch perfect surgeon with few human skills, or her competent, but more empathetic colleague who did far less well in his exams? Is this really the choice?

No. Wrong again. The mistake that I have made here is in separating the task and the compassionate style with which it is performed.  They belong to each other, and the one cannot be carried out successfully without the other. The overall task can certainly be broken down to component parts, but if the visible, human face of it is neglected it cannot be said to have been completed properly. Perhaps that 100% completion rate that doctors like me were trained aim for, achieving it by and large, was always a delusion; perhaps our training, by emphasing completion, led us to become satisfied with sub-optimal care, because that vital element, compassion, was undermined.

The tendency to separate process and compassion was brought home to me a little while ago. The ward round led my team to the bed of a middle aged man with a progressive neurological disorder that rendered his speech incredibly slow, while preserving his cognitive function. His thoughts were as clear as they had ever been. On this occasion I was up against the clock – there was a meeting in 15 minutes time and he was my penultimate patient. As soon as I approached the bed I remembered how difficult our interaction was likely to be, and in a business like way I summarised the results of recent investigations and the management plan. He nodded and managed a few words, slowly, indicating that he understood everything. I moved away from the bed but paused as I heard him form the first syllable of another word. Of course I had no choice but to wait for him to complete the sentence. And that sentence was just part of a series of sentences which he had undoubtedly been considering all morning.

He wished to enlarge our discussion to explore options for future care in the community. For half a minute I attempted to finish his sentences for him, the phrases and idioms being instantly recognisable. Aware of how rude and patronizing this must seem I stopped, allowing him to complete each sentence while I swiftly composed my answer and, in the many spare seconds, controlled my growing agitation about the meeting to which I was committed. He continued.

I looked down at my feet. My body language indicated haste and impatience. I was still two steps away from the bed and standing at such an angle that it was clear I had been arrested mid-stride. Perhaps he was used to this, for he continued in a calm and measured way. I saw myself and saw how poorly I must be coming across. The interaction that had started on my terms now continued on his. I relaxed, approached the bed and closed my mind to other matters. The subject of the conversation was not particularly delicate or ethically complex. There was no great emotional unburdening, no breaking of bad news. He just needed to discuss something with his consultant. From my point of view the business of his medical management had been dealt with in a moment, but from his point of view there was more to do.

The clock ticked on, he imparted the information, told me his opinion…I responded, we had a conversation. And as I walked away, 10 minutes late for my meeting, I reflected that although I had been obliged to change my attitude and soften my style, if only for a short time, it had required quite a lot of effort. It had required me to mentally disengage from the business of the day and carve out a piece of time. I congratulated myself for the compassion I had shown, but then ridiculed myself for such shallow thinking. Although I felt that I had been especially ‘kind’, in fact I had done nothing more than be polite and had show respect to another person for quarter of an hour. And if I had walked away, having decided to ignore the effortful, muted syllable that was just the beginning of a long string of sentences, I would have denied him the chance to talk in depth with the person in charge of his care. So what seemed like a marvelous example of compassion to me was no more than a basic aspect of medical care to him.

This all seems well and good. If you begin an interaction with a patient you must commit to conducting it with compassion. But there is a sting in the tail. I was 25 minutes late to the meeting, one in which important matters were due to be discussed, where decisions were due to be taken that would in the end contribute to improved care for many other patients. So, bearing that in mind, should I have hurried off, with the justification that the needs of the many outweigh the needs of the few, or the one? Should the hard pressed ward nurse hurry from one patient to the next with barely a word, in order to serve the many rather than the few, within the allotted time?

The answer to this is a little easier to find when it is approached from the patient’s point of view. My patient, the ‘painfully’ slow talker who was desperate to explore important, if non-urgent personal matters, had no care for my timetable, my ‘commitments’, nor for the welfare of other patients, either present or future. He was focused on his situation and his relationship with his consultant. And that is the essence of the matter. Patients remember what happened to them, and are not cognizant of their small role in the complex, churning, leviathan structure of the hospital. Why should they be? They want medical efficiency and accuracy, but care greatly for the feel of things. Memories are coloured not by results or shortened stays in hospital, but by the tenor and the warmth of interactions with medical staff.

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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.”

 cover to tweet

Five minute Francis: Chapter 20 – Culture

Selected, illuminating quotes concerning cultural aspects of the NHS.

 

 

 

Sir Bruce Keogh, on how doctors respond to critical data:

Your first response is to say, “The data’s wrong”. Your second response is to say, “Okay, the data’s right but your analysis is wrong”. And your third response is to get your head down and try and sort out the problem.

 

 

Ann Abraham (the then Parliamentary and Health Service Ombudsman), on use of data in the NHS:

Lots of data, a lot less information and even less knowledge, and that’s bad for patients and their families, it’s bad for clinicians, bad for managers, bad for regulators and bad for policy-makers.

 

I suggested to a very senior doctor recently that he might ask his patients for feedback, and he wasn’t unreceptive to the idea, but it was clearly a novel concept.

 

Toni Brisby, former Chair of the Trust, on her reaction to the patient stories in the first Francis inquiry’s report:

 One [set of reactions] is … that it is really profoundly shocking, and I can absolutely see that. The other is a reaction that I’ve had from quite a lot of people within the NHS, which is actually that’s the sort of thing that goes on in virtually all hospitals, and there but for the grace of God go we. Now, I’m not saying that to defend poor care, because I think poor care is indefensible, but I am saying that Stafford is not a peculiar hospital in spite of the shocking nature of part 2 of the report.

 

 

Francis: Failure to put the patient first in everything done

– Many of the negative aspects of culture mentioned above derive from a failure to see things from the patient’s perspective and to understand the effects of actions – or inaction – on them. In the maelstrom of discussions and efforts devoted to reorganisation, devising and implementing new systems and so on, the core purpose of healthcare services has all too often been overlooked.-

 

 

Professor JP Martin (author – Hospitals In Trouble) on doctors and harm:

To start with the most direct and intimate relationship we should consider staff views of patients. Human beings do not harm others callously unless they can justify this in some way. This is so in all walks of life, but in a hospital setting, so deliberately dedicated to the care of others, it is particularly necessary. Such rationalizations do not have to be consciously articulated, but somewhere or other in their minds some latent defence must be lurking ready to be voiced if callous behaviour is challenged. They are, as AM Rees has put it “a way of articulating the inacceptable”.

 

Professor Sir Ian Kennedy, on patient centred care:

I don’t think putting the patient at the centre of what you do is a function of any particular structural approach. It’s a function of culture, of what culture you’ll be bringing to work every day. And that’s the culture of professionals – of all ilk, whether nurses, physiotherapists, managers, and you can have as many structures as you like, and we’ve had pretty much all of them, but if you don’t address the cultural challenge of “What are we going to work for today?”, then it’s going to be hit and miss whether it works.

 

 Anna Walker, former Chief Executive of the Healthcare Commission, on blame:

And, secondly, that where there is a safety incident, you at least start with a no blame culture, because the moment that there is a blame culture, and staff feel they’re going to be blamed, these things will go underground.

 

 

Dr Woodward of the National Patient Safety Agency, on blame:

… what we have found is that in some organisations where the culture is one where an error or an incident occurs, the staff member is suspended or blamed and may be put on different duties associated with the incident outcome. What we tend to find is that the other staff members worry about what happened to their colleague, and consider that may happen to them.

 

So … there is some concern as to whether they would then report themselves if they were either party to or witness to an incident. So we do find that the blame culture that exists in the NHS means that some incidents are kept unreported.

 

 

 

Sir Cyril Chantler, Chair of University College London Partners,

drew attention to the distinction Viscount Slim made between management and leadership:

Leadership is of the spirit, compounded by personality and vision – its practice is an art. Management is of the mind – a matter of calculation, of statistics, timetables and routine – its practice is a science. Managers are necessary, leaders are essential.

 

 

 

Sir Donald Irvine, Chair of the Picker Institute and former President of the General Medical Council (GMC), on a recent visit he made to the Mayo Clinic and the Amplatz Children’s Hospital, Minneapolis.

Wherever you go, you cannot escape it – in the hospital, the medical school and in research. What happens to patients matters from their point of first contact with Mayo to their last consultation. The effect, from the CEO and Board of Trustees down, is a relentless focus on clinical quality and on being sure that patients have the best experience.

 

A nice non-clinical example is the patient’s main car park, which staff and consultants are not allowed to use, which is the nearest to the hospital entrance! The contrast with even the best NHS hospitals, with their competing values and priorities imposed on them from on high, is quite stark.

 

 

Professor Sir Liam Donaldson, on dehumanisation:

Absolutely they do. Absolutely they do. Some people sometimes say that you’re either a born communicator or you’re not. That’s absolute nonsense in my experience … obviously, people come into the professions with compassion and interpersonal skills, but in the pressure of modern care environments I can remember it myself, when you’re pulled out

of bed at night two or three times to go down and see somebody who, you know, is lying, having had a stroke, and you’ve hardly had any sleep and you’re being called to another part of the hospital, to keep in your mind that that person is somebody’s mother, grandmother – it’s vital that you do see that person as a person and not just as a diseased object to be processed, and that needs to be reinforced all the time.

 

People instinctively know it when they come in, but when they’re subjected to the pressures of a modern care environment they can become inured to suffering. And it may be shocking to people but in another way it is a human reaction to [a] high stress, high pressure job.

 

Cynthia Bower, former Chief Executive of the WMSHA and then of the CQC, on ineffectual responses to criticism:

…if you find a problem with an NHS organisation, there’s always some clinical audit that the chief exec could do, or there’s a Royal college that might come along and help them, or there might be some peer review work. There’s an entire industry, if you like, around the NHS, saying “Yes, we know that’s a problem but somebody from down the road is just about to come and help us with that”. Or “We’ve clocked it and we’re doing some training”.

 

 

The Rt Hon Andy Burnham MP, speaking of his time as a junior Health Minister, on disempowerment:

I came to the conclusion that the NHS is not good at giving its front-line staff a sense of empowerment. People with good ideas do not feel that they can easily put them into action, there is a prevailing sense that those decisions are taken by somebody else.

 

Nigel Edwards and Ruth Lewis of the King’s Fund pointed to research indicating the importance of developing a culture of improvement encouraging “discretionary effort (that which we do willingly because we want to)”, through promoting the engagement of staff and exploiting their passion. This is the exact opposite of the attitude reported to these researchers by one chief executive: 

 

“I find a lack of anger in clinicians at the moment; previously they would tell you it’s wrong, doesn’t seem to happen now, people’s heads are down and they are getting on with it.”

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Sir Donald Irvine the culture at the Mayo Clinic:

… patient centred and driven by the pursuit of excellence. It is professionalism which encourages maximum performance, rather than reliance only on regulatory compliance … At Mayo, if a doctor or nurse does not embrace the culture, and reflect it in their practice, sooner than later they will go. Persistent underperformance has direct consequences for the individual.

 

Contrast this with the culture in the NHS where too often poor practice is tolerated, something patients are expected to put up with. The consequences for such practice are exceptional – with a heavily unionised workforce jobs tend to be protected.

 

 

Marcia Fry, previously Head of Operational Development of the HCC, on criticism:

I think you’ve got to recognise the reality that in human nature people don’t like to be criticised. So it’s trying to find some way beyond that in the culture of an organisation allows mistakes to be recognised and learning to be acted on. And it can only come the leadership and the tone that’s set at the organisations’ highest levels.

 

 

Professor Sir Liam Donaldson:

Honest failure is something that needs to be protected otherwise people will continue to live in fear, will not admit their mistakes and the knowledge to prevent serious harm will be buried with the patient.

 

He pointed to “spectacular” successes in other parts of the world, for example: 

I’ve talked at length to one team in – in North America … who had a policy of immediately going to the family and telling them what happened, apologising, and then staying with them through the whole period of bereavement, telling them they would understand their anger … but working it through, making it clear it was an honest mistake, and then asking that family to be part of the planning to ensure that the incident’s being properly understood and that policies have been put in place to prevent it happening again.

 

 

 

 

 

Trialogue: alcoholic, intensivist, advocate.

image

This imagined series of conversations was inspired by a number of clinical encounters over the last ten years.

We arrive at the bedside of a 34 year old man with deep jaundice. His kidneys are failing, he is slightly confused…early stage encephalopathy – it is all due to alcoholic liver failure. We looked after him before, briefly, when he developed jaundice to a lesser degree and responded to a course of steroids. We arranged a liver biopsy, confirmed the diagnosis of alcoholic cirrhosis, and told him that his liver and his life were on the edge of a precipice. His survival depended on continued abstinence, and the next deterioration would probably be fatal. Now he stares up at me through yellow-tinged eyes. The foetor that he exhales is recognisable to the attuned palate. We, the medical team, look down with resignation.

I examine him, review the blood results, and confer.

“The renal failure is bad. It’s new.”

“Hepatorenal?” asked the SHO

“Undoubtedly.” Failure of the kidneys secondary to failure of the liver; a notoriously lethal condition.

There are things we can do. A relatively new drug to kick start the kidneys (no guarantee of success); another course of steroids to reduce the liver inflammation, nasogastric feeding, judicious intravenous fluids. Tomorrow’s blood tests will tell us if there has been a response. If not, the only hope is admission to the intensive care unit (ICU) for a period of dialysis.

His liver and kidney function deteriorate further.

“Shall I refer him to ICU now?” asks my registrar. Her tone contains little optimism.

“We’ll go together. They will need some persuading.”

“But he’s 34!”

“Biologically he’s 70.”

“He was an accountant wasn’t he? Quite high up. Then he was made redundant…”

“That doesn’t alter the situation. But I agree we should support him, if the numbers continue to go off.”

I go to speak with the patient, alone.

“Andrew, this is very serious.”

“I know, you said yesterday.”

“Is there any point asking why you started drinking again?”

“Not really. I’m here now aren’t I? Can’t change that.”

“Did you go and see the community addiction team.”

“Yes. But it’s always the same. And I was detox’d already after the last admission. They asked me to come in regularly but I didn’t get much out of it.”

“But when you had your first drink again, what did you think? Did you think about the fact that this binge could make your liver fail, that it could kill you?”

“I knew that.”

“But it didn’t stop you.”

“Nothing can stop you.”

He is becoming breathless. The accumulation of acid in his bloodstream is now driving his lungs to rid his body of carbon dioxide. He has little air with which to talk.

I walk to ICU, to broker his admission.

“We’ve seen him, your registrar mentioned him.” The consultant has pre-empted me.

“I think he needs to go on a filter. His pH is 7.2. He’s Kussmaul breathing. Almost anuric.”
“This is his second presentation right?”

“Yes. He first showed up two months ago…”

“But still drinking.”

“He stopped for a bit. Slipped up again two weeks ago. He showed willing actually, but his domestic circumstances are terrible. He shares his flat with a couple of wastrels, they bring booze into the house.”

“You really want him transferred? We’ve spoken about this before…you said it yourself, when the kidneys go it’s curtains more or less. And he’s not a transplant candidate.”

“His age makes a difference. We can’t manage him exactly the same way as a sixty year old. If he survives this episode, remains abstinent and recovers he has thirty plus years to live. We can’t overlook that potential.”

“He’s a recidivist, we already know that. And that’s despite engaging with the addiction services. A pretty hopeless case then.”

“But he did engage, and he will again.”

“Look, I’m not refusing him admission on the basis that he’s unlikely to be cured of alcoholism, I’m basing it on the fact that with renal failure he just can’t survive. “

“Without filtration…”

“Filtration will stop him dying, for a while, but his liver will continue to deteriorate and he’ll die of bleeding or sepsis in three weeks time. I’ve seen it a hundred times. You can’t argue with the data.”

“The data is not the same as it was ten years ago.”

“You think I’m out of date.”

“Possibly.”

“Right! Well I’m not going to get into a battle of citations, but my experience, and experience is what most doctors base their practise on, is that individuals such as Andrew will die even if they receive organ support.”

“But with respect, I’m not clear what the basis of your refusal is. Is it prognosis? – well I’ve told you that it’s not as poor as you think it is; is it his recidivism? – well in my opinion he sits in a group with a better than average outlook with regard to future abstinence.”

“I will not try to defend myself so specifically. Sorry.”

“I just need to know, so that when I speak to his family I have an answer to their questions. They may well be aware that the most immediate threat to his life is renal failure, and they may be equally aware that we have machines to do the work of his kidneys…”

“There is no family. I asked your registrar. And if there were, they would have been misinformed. The reason he is dying is because his liver is failing, not his kidneys.”

“Point taken. But if his kidneys are supported he will not die.”

“Not this week. But in two or three weeks. “

“You think that is likely, and I don’t argue…but we cannot be certain. Young bodies can surprise us. He may respond to steroids, nutrition, abstinence.”

“May, may…if we accepted every patient who may recover we would need a hundred bedded unit, not an eighteen. We, society, the hospital, cannot commit to entertaining such small chances of recovery.”

“But most of those requests are for patients in their seventh or eighth decade. This man is in his fourth. How many men in their thirties do you close the door to? Only the alcoholics I bet.”

“Not through any sense of prejudice.”

“You’re sure of that?”

“This is getting personal. I can assure you I am not prejudiced. It’s fortunate we know each other, I might take offence.”

I’m not trying to imply a lack of professionalism on your part, of course…but I’m suggesting that there is a bias against alcoholics, a perfectly understandable one. One that stems from the fact that their illness is due to self-harming behaviour.”

“You cannot prove that. We have admitted umpteen alcoholics over the last year, they are not automatically excluded.”

“But they have not done well, and it is that memory, or experience, that is informing the current decision. It is anecdotal, is it not?”

“We have already discussed the place of personal experience. It has a place. Not every medical decision can be based in published evidence, however entrenched that dogma.”

“So what is the reason for refusing to admit him? I’m asking a lot of you, to delve deep into your reasoning. The most solid argument that you can give me is futility…your firm, possibly justified opinion that whatever treatment you arrange for him on ICU will not make a difference. Of course I have challenged that in citing his young age – he lies at the extreme of whatever cohort of patients you refer to.”

“You expect me to admit that I am biased. It’s like asking a policeman if he is racist.”

“A very good point. Has experience of seeing so many self-harming individuals convinced you, at some level, that all alcoholics are the same, that none of them really want to live, or that none have the internal strength to break their habit? It would be perfectly understandable.”

“Well if I don’t you may well accuse me of self-blindness. I can tell you what I think and believe, and as a rationale man I have to say that I am not prejudiced, and that I assess every patient individually. I do. That is my professional duty, and the behaviour that is expected of me by the GMC [General Medical Council], my employer, by society. You are going to tell me otherwise?”

“No. I am the same. But you have revealed a weakness and an type of arrogance. By telling me that your opinion is developed afresh with every patient, you have presumed that your opinion is important.”

“Of course it is. I am the consultant, and it is my opinion that has been requested. What are you getting at?“

“Your medical opinion is important, yes.”

“The medical opinion is holistic. We are trained to take everything into account – background, social set up, habits, addictions…otherwise we are just technicians.”

“I asked you to see my patient yes, but I did not ask you to provide an analysis of character, value or moral responsibility.”

“Then you are too old fashioned. You are
treating me as a technician, someone to come and set up the haemofilter and the ventilator. I’m afraid when you ask for me you get a physician who is capable, and unafraid, of providing a general opinion as to the patients overall condition and prognosis. Including the likelihood of future drinking, drinking which will undo any recovery that we have allowed by supporting him over the next week or two. If I think it is very likely that he will drink again, what point is there in me offering to extend his life?”

“You are not extending his life…that is a dangerous trait. Personalising your own influence I mean.”

“You know what I mean. I haven’t got a God complex.”

“A mild one. That is my point. You still regard your opinion as important…”

“You are being very challenging…”

“I am trying to show you the thought processes I have gone through. I make the same judgements, I put ‘ceilings of care’ on patients all the time, all the time, general medical patients, patients in their eighties and nineties, or those with end-stage disease, heart failure, emphysema…because I know, I am certain that organ support will not bring about recovery. Then I see a liver patient and I fall into the same pattern of behaviour. I think that is dangerous.”

“And why are the alcoholics any different? They have end stage disease too.”

“You presume. But I have told you that the liver can improve with abstinence. I can tell you with confidence that when you see a patient their liver scores can be misleading…”

“They seem pretty reliable to me.”

“No. They dip during acute illness, and give the impression that the patient is further down the line of their disease’s natural history than they actually are. The statistical models don’t necessarily apply.”

“I use clinical judgment rather than equations, and I am not usually that far out. Let me counter…you are trying to argue that liver patients are special, by virtue of their youth, and of the liver’s ability to recover or regenerate. I take that on board. How is it then that every patient I have refused to take has in fact died. None, not one of them, surprised me by recovering…”

“…you see the fallacy in that argument I hope. They may have been denied the chance to recover…”

“I hadn’t finished. How is it, in addition, that most of those I did actually admit to ICU, swayed perhaps by their age, or by the emergent nature of their presentation, most of those died anyway? I’m not seeing this miraculous trend, even in the young. So you see the larger point, that it is in some way arrogant for me to make these decisions and regard myself as justified in ‘denying the chance’ does not make a lot of sense. I am quite good as determining who has a decent chance of recovery in the first place.”

“And you are also skilled in determining who will drink again and who will not.”

“Past behaviour…future behaviour.”

“Then the patient who comes in having failed to remain abstinent is doomed…for you have made that determination. No clean slate.”

“That might be a trifle naïve. You do see that don’t you? It’s almost as if you are being wilfully naïve..is that it? You set yourself up as their advocate, blind to their addictions and their weaknesses. Blind to their fate in fact.”

“No. I set myself up as being the only one who will contemplate giving them one last opportunity of survival…”

“However low the chance of survival is. The service can’t support that. It is an emotional position, not a medical one.”

“But if I and my like-minded colleagues do not do that, who will?”

“No-one. It sounds cruel but it is just reality. They have drunk themselves to death. Their path to death began long before you or I met them. We are
not responsible for their fate, and we can’t, generally, change it.”

“So I might as well not bother to treat them at all, by that argument.”

“That is a rather long extrapolation of my statement, but there may be theoretical merit in it. Of course they need treatment, they are ill and distressed. We are not inhumane. But that treatment has to fall short of life extending organ support unless there is very good evidence that they might survive the illness. Therefore, we admit bleeders, who tend to get better once you guys have sealed of the bleeding vessel. Sepsis, the same. We support, we give you time, you treat the infection, some survive. But not Andrew. His kidneys have gone, his liver has gone. He can’t survive.”

“But he is 34.”

“Emotional!”

“Isn’t that our role? To provide chances. You admit sicker 34 year olds.”

“But not with end stage organ disease. That’s the point.”

“But there are no other conditions, generally, that cause such severe organ failure in 34 year olds.”

“There are a few. Lung disease in cystic fibrosis.”

“And you take them, every time.”

“But they were born…”

“…with the condition! Yes, precisely. Born with, never asked for it, cursed by their genetic inheritance, unlike the alcoholics who made a choice, were warned, continued to drink. This is moral relativism. And it is flawed. You cannot compare the two…”

“I didn’t. I just highlighted an example of another group of young patients with severe organ damage.”

“But you do compare, by treating them differently…”

“Oh come, ask any sensible person if an alcoholic who has recurrently gone back to drinking should receive the same care as a young woman with heart and lung disease with CF…”

“But we don’t ask the public. They do not set our priorities in healthcare. If that were the case we would not treat prisoners, we would not spend money on heroin addicts, might not even do heart operations on smokers. You cannot sensibly invoke public opinion in this argument. So how are these two young patients different, really? Why one and not the other? Let us say that medically they have the same poor outlook. How can you justify withholding organ support for the alcoholic.”

“There are so many more of them. The unit would be overrun. They tend to stabilise but often, after that, they make no further progress. Two, three, four weeks down the line they are still on the haemofilter, kept alive artificially. Hopes have been raised, the family is optimistic and pleased (if they are present at all), and then we have to explain how the situation is artificially rosy, that at some point the machines have to be turned off, and then the patient will deteriorate because despite everything the liver has not picked up…despite the abstinence, the antibiotics, the feeding…”

“I agree with you there. We are not good at recognising when the attempt has failed. That is something we can do better at. But that is later, after you have provided the chance. The same might occur with the CF patient. You cannot use what might happen afterwards to justify the moral decision that you must make on day one. What is about the two patients, fundamentally, that makes you favour the one with lung disease? Be honest.”

“The whole, the whole package! I will not apologise for it. The neglect, the social chaos, the hopelessness. But primarily it is the medical condition. You cannot press me into admitting that the reason I don’t take a patient is because they are unwashed or addicted. But at some level, like the policeman, I am probably influenced. “

“That is honest. Refreshing too! And I believe it. I am similarly influenced. It is because we are not calculating medical machines, we are citizens aswell. So what do we do about it?”

“About this particular patient?”

“Yes, Andrew. We disagree on the medicine. I have a degree of optimism which I have tried to convince you is not based on a reflexive need to advocate for the patient. You are pretty sure he will die. Surely, in that tie-breaking situation, the benefit of the doubt should be granted.”

“And next time, and the time after that? It will always be one against one, always a tie-break, always the benefit of the doubt.”

“Then you must trust me to request admission only when I really believe there is a chance.”

“We shall see. But in this man’s case…we will admit then. We can agree on what, 5 to 7 days on the filter max.”

“Fine.”

I carry my good news back to the patient.

“So, what now?”

“You go to ICU, they will insert a tube in your neck and attach you to a dialysis machine.”

“Does it hurt?”

“It shouldn’t, but ICU is not that pleasant.”

“I don’t get knocked out?”

“No, there’s no need.”

“I’m not sure…”

“What? Without it you will die before the weekend. That is certain.”

“So you think I’d be stupid not too?”

“Well, it depends if you want to live or not. I’ve been assuming that you do. Do you? We won’t make you go through treatment if it’s against your will.”

“You look perplexed. You find it hard to comprehend someone not wanting to live?”

“Yes.”

“But you’ve seen what my life is like. After you discharged me last time I slept in my car for five nights. I have no friends, I have family but they don’t want to know me.”

“Those things can improve, if you remain abstinent. Things fall into place.”

“No…no they don’t.”

“So is this a protracted suicide?”

“Probably. Probably, if you asked everyone like me, you would get a similar response.”

“I have. And you’re right. A kind of nonchalance in the face of imminent death.”

“Yet still you want to treat us.”

“We focus on the liver, the body…the physical.”

“Perhaps that is the problem.”

“But you had a taste of spiritual, or at least psychological, support. Yet you started drinking again.”

“Yes, clearly I threw it all back in their faces…”

“That’s not what I’m saying.”

“Let me ask you something doctor. Why do you want me to go to ICU, and survive?”

“It’s my job…”

“Not good enough.”

“No, it’s true. The thing I have been trained to do is make people like you better.”

“So if you don’t you will have failed?”

“It will hardly be a success will it?”

“It will look bad.”

“If you survive it will look good. We will have achieved something. And even if you don’t want it now, in a few months, looking back, you may be pleased that we persevered.”

“And I will go on to live a long and happy, productive life. I know that argument. It is the reason we stop and treat the suicidal, because they know not what they are doing. I’m not sure it fits me though. The thing is you see, I feel very ill and even if I did care about living I’m not sure I could articulate it very well at the moment. So I am depending on you to make the decision for me. You seem to be keen. You have persuaded ICU to take me, and it sounds as though that was not easy. So you really are the most important person in all this. If there is a chance of survival it is you who will make it happen. That’s why I wanted to know why you care.”

“I do care…”

“No, no, no. Not the ‘C’ word please. You cannot convince me you care, personally, about me. It’s too much to believe. You do care about what happens to me, but not emotionally.”

“Accepted. I don’t know you. I’m getting to know you.”

“But if I die you will soon forget. You must. All the patients you’ve treated but lost cannot be haunting you. I don’t buy it in films when ghosts of patients past start looming up out of the road…”

“You’re right.”

“So what is it? Why try? Forgive the histrionics, but I’m worthless, socially, I don’t mean anything to anybody…honestly, even my parents, and I do no good, I lost my job…why try when I can’t even try.”

“I’m not sure. I can give you an answer, but I’m not a hundred percent convinced it’s what I truly believe.”

“Try me.”

“OK. Perhaps it’s because of what you say, there is no-one else on your side.”

“You’re a real saint!”

“I told you, it may sound artificial. Perhaps the fact that without me you have no chance, zero, that motivates me to make something out of nothing. I champion a lost cause, something good happens, I go home knowing that it was me.”

“Life and death in your hands. A lovely feeling. But at least you are honest, or insightful, enough to identify that it is not life itself that energises you, but the good feeling that the process of saving a life creates within you. That I do believe. I’ve seen a lot of doctors, and the Messianic tendency exists I assure you. Is that it?”

“Perhaps I wish to prove others wrong. Everyone assumes you will die, I dissent, and if you survive I have won a small argument.”

“Taken.”

“And perhaps there is larger picture…”

“Larger than life itself?”

“…again, one that channels into my sense of well-being, or worth. To make progress in medicine we must not always accept the boundaries that experience has built up around us. We must push them. You are a good example. Experience suggests that you will not survive, even on the filter…sorry, but you are young, and if anyone can break that rule it is you. So I must push the system to accept you and take that chance. If you survive a boundary has been reset. That is perhaps to least self-centred reason that I can think of.”

“Yet it still fulfils a personal need, to be part of something, to be lauded?”

“Doesn’t every action, ultimately? This is not about me Andrew.”

“But as I said, it is…most definitely. “

“So will you go to ICU?”

“If the offer is there, yes.”

I go to see him three days later.

“It’s working, apparently. The kidney machine.”

“Yes.”

“You don’t look that pleased.”

“We are still worried about the liver itself. It hasn’t turned around.”

“So what does that mean?”

“It means that your kidneys will not turn back on if we take you off the machine.”

“And you plan to take me off it?”

“We have to at some point.”

“That is the deal you made?”

“There was no deal. But that was the plan, to support the kidneys, to see if the liver began to recover…”

“And it hasn’t. When?”

“When do we take the machine off?”

“Yes, and when do I die after that?”

“I can’t say. It will be days. And there is still a chance things will turn around during that time.”

“I’m sorry I didn’t get better. I do feel better though, my head is clearer.”

“I’m sorry too.”

“A complex sort of sorry no doubt. And what did it all prove, this exercise? You haven’t achieved your minor miracle, I haven’t beaten my fate…which was laid out for me years ago I hasten to add.”

“The chance was always small.”

“No doctor. I think it was less than that. I can tell by the look on the face of the intensive care guy who comes around. He is good, but I know that he thinks this was a waste of time. It’s just delayed the inevitable.”

“It was right to try.”

“A waste…of time and money and everything. Did my being here stop someone else coming in?”

“Of course not.”

“But money has been spent. Will you find it harder to get the next one like me in?”

“I might.”

“Yet still you tried. Should I be thankful?”

“I can’t answer that Andrew.”

This article has been published under the title ‘The alcohol dependent person and the advocate’ in Alcoholism Treatment Quarterly (January 2013).

Editorial: Berry, in a moving clinical narrative, captures the human/treatment needs of a person with late-stage liver disease in the context of ongoing alcohol dependence. This touching narrative captures medical treatment, ethical/professional institutional and societal tensions involved in reaching out to the most needy of our fellow travelers

Quality of life projections: do doctors have any idea?

It might seem reasonable that doctors, who find themselves suddenly inserted into the midst of a patient’s life, make quality of life (QoL) assessments. They communicate with patients and family members, discover all that there is to know about their background, their habits, vices and hopes, and form an opinion about how the disease will affect the future. But doctors are wary about quoting those opinions in documentation that pertains to ceilings of treatment or resuscitation. They know that if a decision is made on the basis of a ‘poor QoL’ and the patient or family disagree, the potential for criticism is huge. Accusations of arrogance, of pretence to omniscience, of a God complex, may follow.

 

Doctors make predictions about how things will turn out. That is an essential medical skill. We know that if the disease does not respond the patient will at best be weakened, and at worst will die. When the impairment results in inability to look after oneself, engage in conversation or interact with the world, in depression or in chronic discomfort, we begin to regard QoL as diminished. However, the very word ‘diminished’ suggests some sort of measure of quality. If a patient’s QoL is said to be worse, it suggests that we have some sort of comparator. What is that comparator? Is it based on our definition. If so, that definition will be the product of our upbringing, culture, faith and life experience. By making comparisons between enjoyable lives and intolerably burdensome lives we allow our own values to influence the therapeutic process. Disentangling those subjective impressions from the actual experience of our patients is a huge challenge. Louise Aronson, a Geriatrician at the University of California, explored this issue in a New York times article recently (‘Weighing the end of life’), and made the point,

                ‘To many people’s surprise, most of my patients are as satisfied with their lives as they were when they were less debilitated.’

 

So, for my own sake and others’, I have looked into where we stand on the question of quality.

 

The case of David James

QoL issues were crystallised, dramatically, by a recent judgment in the Court of Protection concerning  David James, a 67 year old man in a ‘minimally conscious state’ who could not leave intensive care. A hospital Trust applied for permission not to provide further organ support or resuscitation should he suffer another crisis, but the judge upheld the family’s challenge. Although the Trust won an appeal, shortly before Mr James’s death (on 31st January 2012), the first judgment is worthy of a detailed analysis.

 

An intensive care doctor, when asked about the appropriateness of continued organ support, explored (among other considerations) the patient’s quality of life.

 

                ‘In the highly unlikely event that DJ survives his current illness, he will not be able to function as the musician he was previously due to the neurological deficits (hemiparesis) that he has developed. I have collected significant evidence that leaves me with the view that DJ would prefer to be dead rather than be unable to make music.’

 

According to the judgment however,

 

                 ‘the only basis for this last observation was a conversation with a nursing sister who says that DJ had apparently told another member of staff early in his admission to intensive care that he would prefer to die than not be able to play the guitar. Not surprisingly, DJ’s family has been distressed at the use to which Dr _  put this snippet of information. In his second report and in his oral evidence he retracted without further comment the observation about making music.’

 

Here we see how narrow insights into a patient’s personal, non-medical, circumstances can buckle under the weight of the medical decisions that rest on them.

 

In the judgment, descriptions of DJ’s interactions are given, and the difference in interpretation by medical staff and family members become clear.

 

For instance, the intensive care doctor provided this record of a family visit:

 

                ‘MJ and PJ (relatives) arrived by the bedside; DJ showed clear signs of recognition, smiled at their approach and mouthed what appeared to be words. He seemed to know appropriately when asked if he was feeling alright by his wife. She combed DJ’s hair, during which DJ smiled. DJ was given a paper to read by his son. DJ turned the pages with his left arm. It is not clear to me whether he was reading any of the articles or looking at the pictures in the paper, however he smiled while looking at the paper. During this time he put on and took off his glasses … PJ encouraged his father to play a simulated keyboard on [an] iPad. DJ was clearly interested in the iPad and its mount. He could not play any recognisable tunes on the simulated keyboard, even after his son demonstrated several simple melodies. PJ then opened a communication program with pictographic representations of moods (for example: happy face/sad face/angry face) with a written description under each picture. PJ asked his father to show him what emotion he was feeling. I did not see a consistent response from DJ. DJ appeared to enjoy watching videos on his son’s phone.’

 

To me, a non-neurologist with no specific expertise in severe brain injury, the term minimally conscious seems a little harsh for this situation. Indeed the judge made this comment,

 

                ‘…there is a spectrum of minimal consciousness extending from patients who are only just above the vegetative state to those who are bordering on full consciousness. I would add that to that extent the word “minimal” in the diagnostic label may mislead.I accept that he qualifies for a diagnosis of being in a minimally conscious state, but his current level of awareness when he is not in a medical crisis might more accurately be described very limited rather than minimal.’

 

Another doctor invoked quality of life when justifying his view there should be no escalation in care if DJ suffer another episode of severe sepsis.

 

                ‘ I would argue that further treatment for septic shock with hypotension and any artificial renal support would not be of overall benefit to DJ as such treatments would not return him to his former pleasures in life. ‘

 

And again, concerning the question of CPR…

 

                ‘… the very real risk of lack of oxygen to the brain as a result of any protracted attempt would surely not be in DJ’s best interest given his interest in life.’

 

His diminished abilty to enjoy ‘interest in life’ is invoked as a reason not to resuscitate. The judge then writes of the doctor,

 

                ‘He (the doctor) would not revise his opinion unless matters have improved to the point where DJ was interacting with staff and actively participating in physiotherapy.’

 

In contrast, family members provided evidence to show that he was interacting:

 

                ‘JJ is DJ’s daughter… She produced photographs showing him interacting with members of the family. She said that at the moment, he is not looking so unwell. He has put on some weight and looks more lively and alert. He cannot speak because of the tracheostomy but his face is expressive and the family is sure that he can lipread questions such as “why aren’t you in work?” or “are you going out tonight?” She says that he worries about them. He is interested in family events, news, music and the radio. He is interacting more with the iPad.’

 

And so to the judgment. ‘General considerations’ for and against further organ support are listed:

 

For:

Life itself is of value and treatment may lengthen DJ’s life/He currently has a measurable quality of life from which he gains pleasure. Although his condition fluctuates, there have been improvements as well as deteriorations/It is likely that DJ would want treatment up to the point where it became hopeless/His family strongly believes that this point has not been reached/It would not be right for DJ to die against a background of bitterness and grievance

 

Against:

The unchallenged diagnosis is that DJ has sustained severe physical and neurological damage and the prognosis is gloomy, to the extent that it is regarded as highly unlikely that he will achieve independence again; his current treatment is invasive and every setback places him at a further disadvantage/the treatment may not work/the treatment would be extremely burdensome to endure/it is not in his interests to face a prolonged, excruciating and undignified death

 

 

The judge goes on to explore the process of ‘best interests’ assessments.

 

                ‘…the assessment of best interests of course encompasses factors of all kinds, and not medical factors alone, and reaches into areas where doctors are not experts…’

 

Finally, in deciding in favour of the family, he writes:

 

                ‘Although DJ’s condition is in many respects grim, I am not persuaded that treatment would be futile or overly burdensome, or that there is no prospect of recovery.

 

                 In DJ’s case, the treatments in question cannot be said to be futile, based upon the evidence of their effect so far.

 

                Nor can they be said to be futile in the sense that they could only return DJ to a quality of life that is not worth living.

 

                Although the burdens of treatment are very great indeed, they have to be weighed against the benefits of a continued existence.

 

                Nor can it be said that there is no prospect of recovery: recovery does not mean a return to full health, but the resumption of a quality of life that DJ would regard as worthwhile. The references, noted above, to a cure or a return to the former pleasures of life set the standard unduly high.

 

                 I consider that the (medical) argument … significantly undervalues the non-medical aspects of DJ’s situation at this time.

 

                Moreover, as Hedley J put it in NHS Trust v Baby X [2012] EWHC 2188 (Fam), a life from which others may recoil can yet be precious. … In this case, DJ’s family life is of the closest and most meaningful kind and carries great weight in my assessment.’

 

Being a doctor, one who naturally tends to side with other doctors in such arguments, I have re-read the last paragraph many times. It says it all. We, doctors, are poorly qualified as observers when it comes to making quality of life assessments. The information that we have is sparse, our insights into the satisfaction that can be gained from small things (fleeting familial interactions for instance) are tainted by bias, and the weight that we give to other factors, such as technical futility or even resource limitations are not relevent to the patient.

 

 

Fallibility of QoL assessments: the evidence

Every study on quality of life assessment that I have read comes up with the same conclusion – doctors do not do it well. For example, Sleven et al gave QoL questionnaires to 108 patients and their doctors. A four point scale (FPS – from ‘very good’ through to ‘very bad’) and a linear analogue self-assessment (LASA) scale for QoL, anxiety and depression was employed were used. The correlations between patients and doctors were poor, with most values between  0.3 to 0.4, where 1.0 equals a perfect match. The authors concluded,

                ‘Firstly it is clear that doctors could not adequately measure QoL.’  and,  ‘QoL is a concept that inlcuides many subjective elements, and it is therefore perhaps not surprising that a doctor may not have the necessary knowledge’of the patient’s feelings to evaluate their QoL accurately’.

 

Another study, by Perron et al, analysed the assessments of cognitive ability, independence with activities of daily living, depression, social isolation and general QoL in 255 DNACPR patients, as made by 9 physicians. The results showed that,

 

            Physicians systematically underestimated their DNR patients’ mental state and physical condition: 23.9% of patients with a normal MMSE were considered by their physicians to be mentally abnormal, 28.7% with a normal ADL score were seen as physically moderately or totally dependent. For quality of life, they misclassified 44.1% of the patients reporting a good quality of life. ‘

 

They concluded,

                ‘Our two main results were, first, that quality of life intervenes in more than 70% of the DNR decisions taken by the medical staff. Thus, when implementing a DNR order, physicians are very often influenced by their perception of patients’ quality of life. Second, physicians systematically underrate their DNR patients’ quality of life components (including mental state, physical and social condition, degree of pain and depression).

 

and,

 

                ‘These discrepancies may be attributable to working in an acute care setting, where the physician-patient relationship is superficial and centered on diagnosis and treatment.’

 

 

Other studies show that we may have the wrong idea about long term outcome after resuscitation. De Vos et al found that of ‘827 resuscitated patients, 12% (n = 101) survived to follow-up.’ This appears to confirm what we know, that CPR is not in itself a particularly effective treatment. However,

 

            ‘Most survivors were independent in daily life (75%), 17% were cognitively impaired, and 16% had depressive symptoms. Factors during and after resuscitation, such as prolonged cardiac arrest and coma, did not significantly determine the quality of life or cognitive functioning of survivors. The quality of life of our CPR survivors was worse compared with a reference group of elderly individuals, but better than that of a reference group of patients with stroke.’

 

 …and this leads to the conclusion that,

 

            ‘Cardiopulmonary resuscitation is frequently unsuccessful, but if survival is achieved, a relatively good quality of life can be expected.

 

ie: if you survive you may do quite well. So is it necessary for us to agonise quite so much over QoL in the context of resuscitation? If the patient dies they will not suffer a poor QoL (only the indignity of the CPR attempt), but if they survive, the generally accepted wisdom that their existence will be blighted by bodily disability, dependency on others and depression, may not be true.

 

It is still necessary for us to consider who may or not survive of course, and the de Vos study did find that two factors were independently associated with poor outcome – the ‘reason for admission’ and ‘age’. Although age does matter, we do not use chronological age when documenting DNACPR decisions. Of itself it is over-simplistic and does not take into account the great variation in underlying fitness that exists. However, at the upper extreme of human life expectancy, it is perhaps forgivable, as long as sufficient weight is given to underlying health issues and pre-existing organ dysfunction.

 

 Current guidance

The Resuscitation Council gives the following advice, in situations where the burden of treatment appears to outweigh the benefits (ie. poor projected QoL).

 

                ‘These difficult situations are a potential source of confusion. Doctors cannot be required to give treatment contrary to their clinical judgement, but should be willing to consider and discuss patients’ wishes to receive treatment, even if it offers only a very small chance of success or benefit. Where attempted CPR has a reasonable chance of successfully re-starting the heart and breathing for a sustained period, and patients have decided that the quality of life that can reasonably be expected is acceptable to them, their wish for CPR should be respected’

 

Here then, greater weight is given to the patient’s understanding of quality than to the doctor’s. In the rare cases where the doctor feels unable to agree with this, such is their conviction that CPR is wrong, obtaining  a second opinion or a legal decision is suggested.

 

And what of the GMC? Its guidance ‘End of life care: Discussion about whether to attempt CPR’ includes this paragraph:

 

                132. … You must approach discussions sensitively and bear in mind that some patients, or those close to them, may have concerns that decisions not to attempt CPR might be influenced by poorly informed or unfounded assumptions about the impact of disability or advanced age on the patient’s quality of life.

 

Conclusion

So how do I advise my trainees as they learn to manage resuscitation decisions and end of life situations? How do we allow doctors to apply their knowledge and experience of how treatments affect patients’ function and at the same time discourage them from referring to such projections?

 

As usual it is all about the patient. We rely on patients to provide insights into their understanding of that projection. And if the patient cannot help us we turn to the families. Only the foolhardy march around the hospital making unilateral decisions about their patients’ futures. But at some point it will become necessary to meld the medical insights that they can provide as doctors with the non-medical considerations that only patients or their loved ones can provide. Finding this balance is the real challenge.

 

The safest way forward will be to do everything, all the time, to preserve and lengthen life. For if it is true that we cannot be sure that even an extremely ‘diminished’ and inactive life does not bring rewards, then we must never be tempted to regard an image of the patient in the future requiring complete personal care and enjoying very little external interaction as without value. This must be balanced against a temptation to push our patients’ bodies to the very limit. The danger in doing this is that we may condemn many people who are genuinely near the end of life to time that truly has no quality. Advising patients and relatives in these circumstances requires great experience, and although the evidence seems to show that we cannot hope to understand how they really feel,  our understanding of how medicine, pathology and the mysterious process of recovery intersect is surely too valuable to be discarded entirely.

 

Acknowledgment: Lucy Series, who writes The Small Places blog, explored the David James and other, similar cases recently. Her insights were very valuable.