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.”
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
Illusions of Autonomy 
Leave a comment