Quality of life

Death eclipsed


Finding the right balance between active treatment, which may include surgical or semi-surgical interventions, and palliative care, can be difficult. The two can go on in parallel, of course, but often a full palliative care assessment and plan takes place when the primary medical or surgical team have drawn a line under their management. Ideally, palliative care expertise would be provided alongside active treatment, if it is recognized that the medical condition is incurable, death is likely in a certain time-frame, and there are symptoms that need to be alleviated. In the real world, perhaps due to resource limitations, perhaps due to fear of confusing families, or perhaps because it is very difficult to ‘do’ palliative care while patients are being taken away for various procedures, the two approaches tend to occur sequentially. If a patient dies shortly after such an intervention, there will be regret that the right balance was not achieved. A potentially ‘good’ death was eclipsed by hospital-based interventions that ultimately brought no benefit.


In this scenario I describe a patient, Thomas Franklyn, for whom the correct balance between active treatment and palliation was difficult to find. It is fictional, and I have deliberately kept the ‘procedures’ and the ‘disease’ unnamed, so that its principles can be applied in any medical area.


Part 1

Complaint: Excerpt from letter, written by family member to the Trust:

‘…we do not understand why Thomas had to go for all those procedures, including one to stop bleeding that occurred as a complication, when he was clearly dying and suffering. The doctors asked him how he felt about having them, but he was in no state to give an answer. By the time the palliative care consultant came to see him he was so weak, any chance of going home had passed. In the end he died in the hospital which was not what he wanted. It was obvious that he was dying from the beginning, but because of these decisions his last few weeks were spent waiting, recovering from procedures or in pain… ‘


Part 2

View from the ward sister:

You can often tell when death has become inevitable. The patient engages less, eats less, sleeps more. There weren’t the classic signs of imminent dying in Thomas’ case, but we all knew it was not far off. So on the wards rounds we mentioned palliative care, and the doctors agreed it was time. But at the same time there were more procedures that could be done, not for the sake of it, but because they were designed to ease certain symptoms, or reduce the risk of infection, and ensure a bit more time. We asked Thomas if he was happy to have them – he was quite capable of agreeing and signing consent forms – and he said yes. He got through the first two procedures pretty well, but the after the third there was a bleed, and we rushed him down one night to sort it out. They stopped it, but he was never the same afterwards. A lot weaker, far less engaged with us and the family. He never really recovered. Palliative care came to see him again, and because our team now made it clear that there was nothing else to be done from their side, they started full end of life care… a syringe driver etc. I could tell the family weren’t happy. They had set their hearts on him getting home, had prepared a room downstairs. But he deteriorated too quickly. It was so sad. Then, two months later, we received the complaint…


Part 3

View from Foundation Year 1 doctor (FY1):

I’ll never forget this patient. I discussed the case with my educational supervisor and wrote a reflection on it. The main challenge, for me, was balancing that sense of diminishing returns from the procedure against the time it was taking to arrange them, and the discomfort they caused. We all knew he was dying, and to be fair my consultant discussed the possibility that the procedures might be futile, but on the other hand if they worked, it was possible that Mr Franklyn would survive an extra two months, maybe three. That would have been a real gain, for him. But it didn’t work out.

The thing is, I had a sense that it wouldn’t work out. Mr Franklyn was getting weaker every day, not eating well, and I had a bad feeling. In the discussion about futility, which we had in a meeting room one morning before heading out to do the ward round, I was asked my opinion. It was my second month as a doctor. I was really pleased to be asked, and I said that I thought he looked very frail and wouldn’t tolerate any complications well. But as soon as I started talking, I thought – what do I know? I haven’t even seen a patient with this before. I was very happy to accept the consultant’s view, as she must have seen hundreds. So we talked to the family and the patient, who was still alert enough, and were honest that the benefit could be good, but that it would take more time to get the procedures done. They agreed. We didn’t say they were high risk, I don’t think my consultant would have suggested them it they were. But then there was a complication, and it appeared to speed up Mr Franklyn’s dying. I remember going home thinking – I knew it! I was right that time, but next time I might be completely wrong. You have to respect experience.


Part 4

View from the consultant:

At the end of the day, it looks like a bad call. I was very careful to involve the whole team, nurses, the family, and the patient of course. But in these situations where you’re dealing with quite specific diseases and specialised procedures, people look to the clinical leader in the team. They are the ones who have seen it before, who have the deepest experience. The patient, Mr Franklyn, was passive… by which I mean weakened by his illness and happy to receive advice from a team he trusted. It isn’t right or fair to dump all the information, the pros and the cons, on a patient and wait for a yes/no answer. People are different, but they often need to be guided. That is our job. I guided him towards the procedures that, if successful, would have allowed him home for a good couple of months. One of them went wrong, as we know.

What about the palliative care side? That was a criticism, that we – I – didn’t get pall care up sooner. Well we did, but Mr Franklyn was being prepared for procedures, getting transfusions, having antibiotics to cover the procedures, having regular blood tests… the situation wasn’t really stable enough for them to initiate a calm management strategy. So I said, look, we’re in the middle of everything, we’ll let you know when the procedures are done. We were proactive on agreeing an escalation plan and resuscitation parameters, but even that was a bit tricky. What if he deteriorated just after, or during, an intervention? Should we let him go without any circulatory or breathing support, or try to re-stabilise? Can you take a patient with a obviously terminal condition to ICU to get them over an acute, procedure related complication? ICU may have a view different to the ward team? If you decide no, you should tell the patient as they go for the procedure that if they deteriorate they may never wake up again, as we will let them go. Who is going to agree to that? (In the event he did deteriorate, with a bleed, and that required all hands on deck for a while.)

What did I learn? The more I see of these sad situations, the more I am inclined to say to patients, yes, there are things we can do, and they may work, but we are not going to stop the underlying disease. So do not be afraid to draw the line. Tell us when you have had enough. We, the doctors, may not be the best ones to tell when that time has come, despite all our training and all our experience. It may sound like I am absolving myself of responsibility, but sometimes it is true.


Part 5

View from the palliative care consultant:

I often ask myself the question – how emphatically should I make the argument against further interventions, if I feel that the patient is likely to die very soon? This requires very careful analysis, and each case is different. I  am asked to see patients under many adult specialties – neurology, cardiology, general surgery, gastroenterology, gynaecology – and each one has its specialised procedures, its own evidence and knowledge base. Although I am confident that I can recognize the approach of futility, I am not always right, and I have seen lives extended almost miraculously, by fairly straightforward surgical or endoscopic or radiological interventions. They can work. So it is not justifiable for me to come onto a ward and say, wait, slow down, leave this poor man alone, he is ready to go home to die. On the other hand, I, and the specialist nurses, and perhaps ward nurses, may need to be guardians of a patient’s dignity if we feel the specialist team is having trouble seeing the wood for the trees. It’s a balance. Each time. With Mr Franklyn, events show that we were wrong, and I was wrong. If I had stepped in assertively after the second procedure, recognizing that he was continuing to go downhill, we may have been able to get him home, albeit for a week. That would have satisfied the family, and Mr Franklyn. We lost that opportunity.

This cases adds to the sum total of experience. It also confirms that while we do our best, we cannot control the disease, nor can we control the outcomes of every procedure. Complications do occur. They will occur. But usually, they do not, and the patient gets the best out of the procedure.

We involved the family in every decision. The patient too, but he was becoming disengaged. We decided to see the treatment strategy through – perhaps there was an element, in the primary team, of ‘now we have started we should finish’. And it didn’t go as we hoped.

The complaint, when it arrived, was upsetting. But it shows – and this is a lesson – that although we thought the family were alongside us with the decision-making, they weren’t, not entirely. We flattered ourselves that there was consensus, but perhaps we convinced ourselves of that because we knew what direction we wanted to go in.





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Not For this and Not For that: emphasising the positive in care for the elderly

It is a sad truth that we sometimes spend as much time deciding what not to do when treating elderly patients as we do determining what options are appropriate. The early part of each admission is straightforward enough – we take a history, perform an examination, form a list of possible diagnoses and initiate treatment of some sort. But as we walk away at the end of the day, part of our duty is to consider what will happen if the patient deteriorates. If, in the middle of the night, or over the weekend, they suffer some sort of collapse – what instructions should we leave?

In most cases we do not need to leave specific instructions, because the hospital is set up to deal with such emergencies. The patient’s worsening condition will be identified by a nurse, the on call team will be bleeped (perhaps a ‘MET’* call will be put out), resuscitative measures will be taken and they may even be transferred to the high dependency or intensive care unit. If their heart stops they will undergo cardio-pulmonary resuscitation (CPR). That is the default. For many though, such a sequence of events will prove disastrous.

The reasons why very elderly or already frail patients should not undergo resuscitation have been rehearsed on this blog before, but many of those arguments apply to ICU admission too. The potential benefits are so slight that the definite burdens (such as prolonged ventilation, tracheostomy insertion, connection to a dialysis machine via central venous catheters, critical care neuropathy) cannot be justified. So, it is necessary to determine in advance whether those options are offered.

This is reasonably straightforward if the patient is alert and understands the issues. Unfortunately, a large proportion of acutely unwell elderly patients do not have the capacity to engage in such a conversation when they arrive in hospital. We therefore turn to the family, and by combining what we learn about their pre-existing wishes with what we anticipate are the possible benefits of organ support, we set ‘ceilings of treatment’. We try to work out what the patient would want if they could talk to us clearly. We make an informed guess, then we write in the notes phrases such as:

Not for ICU

Not for MET

Not for escalation

Ward based care only

Not for filtration

Not for NG tube

Not for NIV**

Not for ventilation, for NIV only…

Not for this, not for that. A typical ward round or on-call shift might require many such decisions, and it can feel overwhelmingly negative. Doctors are trained to treat actively, but increasingly, as the population ages and more and more patients are admitted to hospital toward the end of the expected human life span, they have to be protect them from the full gamut of invasive medical procedures. And the less information they have about the patient’s preferences, the greater the weight of responsibilty in setting those ‘ceilings’.

How then to change the emphasis and accentuate the positive, focus on what we can do, and not what we cannot?

It’s all about anticipation. I am always amazed when patients in their nineties, or their families, express surprise when I bring up the possibility that they might die. It seems never to have crossed their minds! This natural reluctance to consider death has been challenged. Dying Matters (a coalition led by the National Council for Palliative Care) highlights that,

81% of people have not written down any preferences around their own death

Nearly two thirds (63%) of us would prefer to die at home, yet of the 500,000 people who die each year in England, 53% die in hospital.

They request that people consider,

The type of care you would like towards the end of your life

Where you would like to die

Whether you have any particular worries you would like to discuss about being ill and dying

Whether you want to be resuscitated or not

‘It’s OK to die’, an organisation in the United States set up by Monica Williams Murphy MD, advocates a similar set questions. Imagine if every patient came into hospital with this information. No more guess work. No more stressed families trying to explain what their elderly relative would have wanted, feeling the weight of responsibility even when reassured that they are not being asked  to make ‘life or death decisions’.

Engaging in these questions may not be natural. Those with manifestly terminal conditions may be drawn into such discussions by their families, palliative care teams or general practitioners (GPs, family doctors), but those who are in their ninth and tenth decades without end stage disease are not necessarily going to dwell on their mortality. It falls to their GPs to initiate the discussion.

The concept of the Advance Care Plan (ACP) is well established, albeit in the context of life limiting conditions. The document ‘Advance Care Planning: A Guide for Health and Social Care Staff’ specifies that,

The difference between ACP and care planning more generally is that the process of ACP will usually take place in the context of an anticipated deterioration in the individual’s condition in the future, with attendant loss of capacity to make decisions and/or ability to communicate wishes to others.

It might seem then ACPs are not intended for people in a stable condition who are in no imminent danger of deteriorating. The document does however include this common, ‘non-terminal’ example scenario:

Mrs Carter – An 81 year old lady with COPD, heart failure, osteoarthritis and increasing forgetfulness, who lives alone. She fractured her hip after a fall, eats a poor diet and finds mobility difficult. She wishes to stay at home but is increasingly unable to cope alone and appears to be ‘skating on thin ice’.


Perhaps then it is not unreasonable to introduce the idea of an ACP to people with common cardio-respiratory problems that do not seem ‘life-limiting’ in the most obvious sense.

The same document is explicit that:

If an advance decision includes refusal of life sustaining treatment, it must be in writing, signed and witnessed and include the statement ‘even if life is at risk’

And warns that it,

Only comes in effect if the treatment and circumstances are those specifically identified in the advance decision

These stipulations make ACPs less workable in primary care or general medicine. How can a person be expected to anticipate specific circumstances? How will they know, in advance, what the burden of those life sustaining treatments will be, in relation to the possible benefits. Again, the emphasis is on the negative. Wouldn’t it be more helpful to know what they do want, what their ultimate goals are. For instance, ‘to be able to look after myself when I get home, feed myself, to interact with my grandchildren…’ These goals may preclude extended life preserving treatment that can be reliably predicted to result in chronic debilitation or loss of independence.  They may be better suited to a ‘Preferred Priorities of Care’ statement. In reality, I suspect the term ACP is used in a more general way than intended.

Do ACPs work? There is some evidence. A study by Karen M Detering et al (BMJ 2009) randomised 154 of 309 mentally competent octogenerian in-patients to the make an ACP, and found,

Of the 56 patients who died by six months, end of life wishes were much more likely to be known and followed in the intervention group (25/29, 86%) compared with the control group (8/27, 30%; P<0.001).

            In the intervention group, family members of patients who died had significantly less stress (intervention 5, control 15; P<0.001), anxiety (intervention 0, control 3; P=0.02), and depression (intervention 0, control 5; P=0.002) than those of the control patients.

A proactive approach to ACP (or equivalent) is not without risk. As part of the National End of Life Care Strategy GPs were encouraged to identify those under their care who were predicted to die in the next twelve months, and to make a list. Some parts of the press did not take this well;

Thousands of patients have already been placed on ‘death registers’ which single them out to be allowed to die in comfort rather than be given life-saving treatment in hospital, it emerged last night.

            Nearly 3,000 doctors have promised to draw up a list of patients they believe are likely to die within a year, Department of Health figures showed yesterday.

            As part of an unpublicised campaign endorsed by ministers, GPs have been encouraged to make lists – officially known as End of Life Care Registers – of people they believe are going to die soon and should be helped to do so in comfort. (Daily Mail, 18th October 2012)

The subject became entangled with the Liverpool Care Pathway controversy. I don’t know if the registers have continued to be compiled. The taboo of death remains strong. But the idea is sound. Dying Matters have promoted the ‘Find your 1%’ approach. They request that GPs ask themselves,

 “Would I be surprised if this person were to die in the next 12 months?”


  …this simple question is accurate seven times out of ten.

They emphasise some general indicators of likely death within 12 months:

– Limited self-care and interest in life: in bed or a chair more than 50% of their time.

– Breathless at rest or on minimal exertion

– Progressive weight loss (>10% over last six months).

– History of recurring or persistent infections and/or pressure ulcers.

The GMC too recognises the importance of being forward about end of life care planning. Its End of Life Care booklet includes this:

If a patient in your care has a condition that will impair their capacity as it progresses, or is otherwise facing a situation in which loss or impairment of capacity is a foreseeable possibility, you should encourage them to think about what they might want for themselves should this happen, and to discuss their wishes and concerns with you and the healthcare team.


Areas for discussion include:

            –  the patient’s wishes, preferences or fears in relation to their future treatment and care

            – interventions which may be considered or undertaken in an emergency, such as cardiopulmonary resuscitation (CPR), when it may be helpful to make decisions in advance

            – the patient’s preferred place of care (and how this may affect the treatment options available)


These initiatives and guidelines are fine, but harder to achieve than they are to promote. Talking about death is never easy (for families or doctors), and it is still more common than not for patients to be admitted with no evidence, verbal or written, of their fears, priorities or goals. It falls on doctors and nurses whom the patients have never met to introduce the subject and explore those issues…or, when mental capacity has been lost, to gather clues from the family who may not have had those conversation either. Until this changes it will remain a sad part of our role to gauge how far each patient should be escalated, hoping always that our judgment is correct.


* MET score – medical emergency team; most hospitals now have an ‘early warning’ system for deteriorating patients, whereby nurses can summon the on-call team if there are dangerous blood pressure, pulse rate or respiratory changes.

** NIV = non-invasive ventilation; a tight mask is applied to the face to improve lung function, effective but often quite unpleasant as the patient is awake

Trialogue: alcoholic, intensivist, advocate.


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.”


“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.”


“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.”


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?”


“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.”


“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.”


“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:



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



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).




                ‘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.



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.  

Complaint: a grieving son meets the consultant who signed a DNAR form without discussion

This dialogue is part of a continuing examination into the interactions that occur when doctors and families meet at the end of life. The way that these two parties react to death, the emotions that they project and the decisions they make, must derive from the same understanding of the patient’s needs if conflict is to be avoided. Sadly that is not always the case, and readers of this blog may be aware of cases where disagreement has led to complaint, and sometimes to court.


In this scenario, an 79 year old woman was admitted to hospital with pneumonia. The medical team recognized that she was deteriorating quickly, and that resuscitation would not be effective.  An attempt was made to contact her next of kin, a 54 year old son, by telephone, but there was no answer machine. He lived 200 miles away, although two other children lived closer. She died 18 hours after admission, and no attempt was made to resuscitate her. Following a complaint, that son has arranged to meet the consultant in charge of his mother’s care.


Of the many factors that contribute to a lack of assiduity in making sure that discussions about resuscitation occur, an important one, I feel, is what I call the ‘normalisation of death’. Here, the relative comes to a similar conclusion, and challenges the consultant.


The son (S) sits in an office with the medical consultant (C), a senior nurse and a member of the PALS team. Only S and C speak. 



C: Thank you for coming.


S: I just want to know why you made that decision without asking us, her family. I was listed as next of kin.


C: Of course we need to discuss why it was decided that your mother should not be resuscitated without your involvement, but it is very important for you to realise that the decision was not made lightly. Her death was felt to be inevitable. We thought that there was absolutely no hope of recovery. We always try to discuss those decisions with relatives but sometimes it is just not possible.


S: But how could you make that decision to let her die without asking us? She would not have wanted you to give up so easily. We would have told you that.


C: It was not a matter of ‘letting her die’. We knew that she was likely to die despite everything that we were doing, and that resuscitation would not have worked. So yes, we did permit her to die, because we saw the signs that this was inevitable. We never had a chance of stopping it happening. She was not deprived of a meaningful opportunity to survive…in our opinion.


S: But she never had a chance without it. She would have wanted you to try – your interpretation of meaningful is…your interpretation. What of hers or ours?


C: Well, if she understood the very tiny chance of success, I don’t think she would have wanted us to resuscitate.


S: How can you say that? You didn’t know her. She never gave up on anything. However small the chance of success, she pursued it, in all areas of her life.


C: I’m sure she did. I definitely got that impression from her and from the background history that we learned about her. But we are talking about a different sort of chance here. The risks in making a decision on this small chance were probably more grave than those she was used to in other areas of her life. The risk was definite harm and suffering. In fact it wasn’t a risk…it was a certainty.


S: Still, it was not up to you to make that decision. It was not your body or your mother. We should have been involved. And we know that you are required to involve us. It’s in all of the regulations and professional guidelines.


C: You are right, it is. But those guidelines cannot apply to every single situation. And this was a special situation. She was deteriorating rapidly. And although we tried to get hold of the next of kin, you, or other family members, the fact is her illness was progressing at such a rate that I do not think we would have reached an agreement with you before her heart stopped. And I do not wish for my patients to undergo resuscitation by default. Just because the treatment is theoretically available does not mean it should be given to every patient. That would be in unthinking way of practising medicine. And although you are right, it would have been ideal for her, and if not her then you, to have been involved, it is I who would have been responsible for any side effects from that treatment. And those side-effects are not minor. I don’t really wish to describe them in detail to you now when you are grieving, but you undoubtedly know about them.


S: Yes of course. Cracked ribs…brain damage. We know all about those. But if there is a chance of life afterwards surely that outweighs all of those factors. Wouldn’t you agree that the continuation of life is worth it? Don’t you think so? Life!


C: We concern ourselves primarily with the quality of life rather than its duration.


S: I know you do. Quality over quantity. But surely that assessment requires more information about what the patient would want. Before deciding where they lie on that set of scales you must involve them, or if not then their family. Because your assessment of quality, is coloured by the many bad things that you have seen in medicine. You have a jaundiced view. You must not be allowed to make unilateral decisions.


C: You have a point there. My experience of seeing patients who never recover from resuscitation, instead spending weeks in a intensive care unit, in a sedated state, or deteriorating in a ward, unable to feed themselves, may have coloured my view. But I don’t think that makes me less qualified to make a decision…rather it makes me more qualified. That knowledge reonforced the sense of duty I feel…to protect patients from that fate… from that vision of recovery that I know converts into reality very rarely indeed. Life itself is precious, I agree, but a life allied to suffering, without meaningful communication with loved ones, is I would argue a life that is not worth living. I believe that.


S: So you are deciding whose lives are not worth living. That is what I suspected. It is completely unilateral. There is too much power in your hands. And I will not be so rude as to enter into other factors that might be influencing you. Such as worrying about how long such patients will remain in your hospital, using up intensive care facilities. Or the money that are spent on them. We won’t go there…


C: I can assure you that those factors do not enter my mind. When I look after a patient like your mother my only thoughts are for their well-being. But we need to think about how she was before she died. We been talking about how she might have been after resuscitation, and I feel that I cannot convince you that the small chance of a successful result was not sufficient to risk the suffering that resuscitation can cause. But let us imagine what she was like when she was alive. Do you mind? I don’t mean to be insensitive.


S: Go ahead.


C: Have you seen a person die?


S: No.


C: I will describe it for you. It can happen gradually or suddenly. The person who was once talking can arrest and all discernible functions will cease. When this happens the chance of a successful result is perhaps greater because, sometimes, you can just as rapidly the heart back into a normal rhythm. But even then in a very frail patient shock to the system is too great for long-term recovery. But in your mother’s case it was a more gradual process. She came in talking, eating, functioning albiet weakly, but the chest infection did not respond and soon she did not have energy to eat or drink, was unable to bring a cup to her lips. Her heart was still beating yes, but she turned her head to one side.


I can never tell what patients are thinking when they have reached the stage, or if they are forming thoughts at all. What I can say is that the life that they have is purely internal. There is no exchange of ideas with those around them, at most perhaps an indication of how they are feeling or perhaps a flicker of recognition. And you must bear in mind that this is how they are before the heart stops. So if you ask me why I did not try to resuscitate your mother I must make it clear that the level of existence that she had prior to her heart stopping was one that I feel sure she would not have wanted to return to. Can I say with certainty that she could not have been brought back to better state than that? Not 100%, of course…but I can be certain that that was the most likely outcome. She did not die without warning. We had seen the signs of deterioration, and knew that within hours, a couple of days at the very most, her heart would give out. She was already receiving the maximum amount of treatment that we could give. Her heart stopping was a natural end to her illness.


S: You say she was on as much treatment as you could give. You explain that her heart was already weakening. But what about intensive care?


C: Intensive care is not for all. It is not automatic if patients deteriorate. Intensive care, if offered indiscriminatley, is sometimes a drawnout attempt at resuscitation. And it brings with it the potential harms, such as invasive ventilation and sedation, that resuscitation would invoke within a few minutes. In intensive care those treatments are added sequentially as parts of the body fail. But it is because we know that recovery is so unlikely that we do not send all of our patients there.


S: So by saying that she would not appropriate for intensive care you are implicitly saying that she was not appropriate for resuscitation?


C: That is true.


S: You cannot have one without the other?


C: If the patient is not referable to intensive care, it is not reasonable to resuscitate. Because after resuscitation you know that they will need intensive care. You cannot have one without the other.


S: So why are these issues not explained upfront? Why when she came into hospital was it not explaied that she would not go to intensive care?


C: It is like discussing a treatment that you know will never be relevant. It’s like talking about chemotherapy if a patient does not have cancer.


S: I don’t follow that. It’s an irrelevant parallel.


C: I’m trying to illustrate that if a form of treatment has no place in a patient’s treatment plan there is little point in talking about it. It confuses patients, leads them to consider options that do not exist.

S: But again you can’t pretend to know people feel about the preservation of life. It does not seem relevant to you because you are comfortable that a patient like my mother should be allowed to die without resistance. But the families of your patients will not always agree. The families of your patients have lived with those individuals their whole lives. Their death is more than the end result of another presentation of severe pneumonia. Their death is the destruction of a library of memories and experiences. It cannot be accepted without more discussion and thought.


C: I understand your point. But that accumulation of experience and memories is not respected by disease. Pneumonia affects people without discrimination or favour. And we know that disease well. Whatever the individual circumstances or experiences of our patients, and whatever their relationships, the disease will do what it will do and the patient’s organs will resist or succumb in complete ignorance of the value that the individual puts on thier life. The backdrop that scenery of emotional parts will make no difference from a medical point of view. I do not wish to be cold or overly clinical, but that is the truth.


S: But it is that attitude – doctor – that leads us to accuse you of brutalisation. You portray the patient as a collection of organs fighting a disease. And that results in a shrinkage of respect for everything else that patients bring into hospital with them. That shrinkage makes you less inclined to do everything in your care to understand the patient in the context of their family life. You see another severe case of pneumonia in an elderly person and you know, the moment you see that patient, or my mother, they will probably die. Only that does not cause you much distress because you have already seen ten in the last fortnight. It is inevitable…it is automatic, for you.


C: That is a very harsh accusation. You’re accusing me of valuing the lives of our patients to a lesser extent then their families.


S: But doctor, be honest with yourself. That must be true. You do not love these patients. If one of them dies you will go home and carry on your life. So don’t pretend that you value these lives as much as you value the lives of your own family. What I am asking you to consider is that you remind yourself how important those lives are to the families that you try, as you say – half-heartedly I say – to get hold of.


C: We do that. We are sensitive to these issues. You paint an unfair picture of us.


S: Then why only  a single attempt to contact me? Why was a nurse not trying every avenue to get hold of me or one of the other family members. It would not have taken much effort or gumption. It was just not a priority for you, your team. You knew what was going to happen and that you could not stop it. I’m beginning to accept that, I respect your medical opinion. But why allow that to happen without doing everything in your power to bring us to the bedside earlier? I’ll tell you why. Because death is routine for you. For all of you. Common, frequent, a daily occurence, a column on the chart…routine! So for you, death does not bring with it the sense of crisis, a frisson of the exceptional, that it does for the families. This must be the explanation. Death is inevitable…you surrender to it – on behalf of your patients – and you move on…


C: We don’t…


S: Have time? I don’t care…


C: I wasn’t…


S: You move on,  to concentrate on those whom you may be able to save. It’s important work, we accept that. You fight nature, march onwards across many battlefields, and cannot spare the time to stay behind with the dying or the dead, for nothing that you can do will save them. To do so would distract you, divert your valuable energies. I get that. But as the memories of the dead recede in your own mind, they enlarge and dominate the lives of the relatives. It is a crisis for them. Death, however it arrives, inevitable or no – and who am I, really, to argue with about that? – is a special moment. We need to be involved. Lack of involvement lends it an air of… insignificance, throwaway. We know that tomorrow another will die, and another, and another, but we don’t care about that. We can only think about our death. That’s where you, or the system you work in, fails. By not allowing space – physical, emotional, temporal  – to develop around the deaths that you manage.


C: I…I can’t defend the lack of privacy you experienced, I know that is not ideal, but regarding of your belief that we are not affected by death, and do not allow it to slow us down…I cannot agree with that. We do remain sensitive to death. We have relatives to, most of us will have experienced death in the family. We are not automatons.


S: Are you sure? In this hospital, rushing around, moving your patients through, are you sure that you permit yourself the luxury of feeling how important each death is?


C: Not to the same extent as the importance felt by the family, that would be unrealistic…


S: But enough…enough to put other things aside, and make each death, or even before death, the prospect of death, to make each one special? If you did, and if the members of your team did, they would have found me or one of my siblings, before you made the decision not to resuscitate. In this case doctor, my mother’s case, the discrepancy between your team’s perception of her death’s significance, and ours, was huge. That’s why we are here isn’t it? You made a decision without us, and we believe that is not what she would have wanted. And you did not give yourself the opportunity to convince us otherwise. You thought it would be ‘just fine’…because it’s just so obviously right to you! Do you understand what I’m saying?


The End.

[The case is fictional]

Painful procedures without informed consent : a growing dilemma in healthcare for the elderly

My niece spent a week shadowing me for work experience recently. Most sessions were with helpful colleagues, but I brought her into one of my endoscopy sessions. I looked forward to showing her how interesting it was. In the car, on the way home at the end of the week, I asked her if she was still keen on medicine,

                “Definitely. I loved the surgery..but I couldn’t do what you do, I couldn’t hurt people.”

That got me thinking! The realisation that being a doctor involves inflicting pain is quite shocking and unpleasant for medical students. For me it came in the fifth year, when I started doing phlebotomy rounds every morning. Particular patients, listed for daily venesection, would wince as they caught sight of me entering their bay. After the third failed stab I had to pause and ask myself if it was reasonable to continue. But I did, only giving up after five attempts. The fact that each episode of pain represented a tiny step up the learning curve made me feel even more guilty. Now, as a consultant, I am not removed from the dilemma of ‘therapeutic pain’.


Here is a scenario (the details have been changed from reality, as normal). A previously rather impressive, but moderately demented 91 year old lady is admitted with pneumonia. She had been living at home, assisted by carers who visit twice a day. The infection causes delirium, and despite some improvement with antibiotics it becomes clear that her strength and overall level of function have taken a significant hit. On the ward rounds and board rounds doctors, nurses, physiotherapists and occupational therapists begin to discuss the intensity of the care package that she will require. It is felt that the most realistic option will be a residential home.

She enters a period of stability and the doctors spend a little less time with her each day – there is very little to do, medically speaking.

One day she passes some altered, darkened blood on the toilet. Her blood count falls. It is supposed that she has bled from a gastric ulcer, and an endoscopy is arranged. Her family are informed, and a Consent Form 4 is completed. This is the type of consent form that doctors write on when a patient does not have the mental ‘capacity’ to make up their own mind if they actually want the procedure. In this case the doctors agree that the endoscopy, although unpleasant, is brief and straightforward enough to be justified, ‘in her best interests.’ She has the procedure, under the minimum dose of sedation…and no ulcer is found. The endoscopist writes ‘procedure poorly tolerated’ on the report. Next day she has no memory of having the camera passed through her mouth into her stomach.

She remains stable.  Two days later she bleeds again, and is transfused another two units of blood. The team arrange a CT scan to look for a bowel tumour –it doesn’t show one, but the radiologist suggests that the caecum (90cm into the bowel) is examined directly. They choose to wait again, reluctant to submit her to a colonoscopy.

She bleeds again. Another two units. Each episode of blood loss weakens her a little. The medical decision is, on the face of it, easy…she needs a colonoscopy. But this test is difficult for elderly patients. It requires that the bowel is cleaned thoroughly with strong laxatives, before the endoscope is negotiated through entire length of the large bowel. The elderly tend to have angulated, inflexible colons, factors that make the procedure more uncomfortable. It is no small thing to arrange such a test for a 91 year old.

Her family are informed of events again. Colonoscopy is explained in some detail. ‘What will happen if she doesn’t have it?’ her son asks. She will bleed again, and require another transfusion. It could go on and on. She will not be able to leave the hospital. It is likely that she her health will deteriorate and she will succumb to a complication. The fact that there is limit to the amount of blood that can be given to patient is not discussed.  ‘Can you put her to sleep for it this time?’ The answer is no. A general anaesthetic is out of the question in such a frail lady. The family agree that she should have the colonoscopy. After all, it is usually safe, and she managed the other one pretty well. It is arranged.


It was I who did the first endoscopy. It started well but after thirty seconds she became distressed and tried to pull the camera out. I asked a nurse to hold her hand while I finished the test. She fought and dug her nails into the nurses palm. I was relieved to hear that she couldn’t remember a thing afterwards.

It was my list that she was booked onto for her colonoscopy. I didn’t recognise the name when I arrived in the department and read my patient list, but when her turn came towards the end of the afternoon I went out to consent her, I sighed. She appeared frailer, and could barely engage me in conversation. Another Consent Form 4 had been filled out, and I duly countersigned it, thereby adding my weight to the decision that had been taken on her behalf.

I gave the sedation (as much as I could safely give) and started the procedure. Within minutes, as the camera began to stretch and twist the part of the bowel affected by diverticular disease (almost universal in the elderly), she began to object. I carried on, sure that within a couple of minutes the worst would be over for over. But it wasn’t, and her cries became louder. I changed her position, I used every endoscopic trick, and a centimetre at a time progressed along the bowel. Facile words of encouragement from myself or the endoscopy nurses, such as ‘You’re doing very well,’ ‘Concentrate on your breathing…not too much longer now,’ and ‘You’re completely safe, it’s worth it to find out what’s wrong…’ did no good. She wasn’t listening, and we had already determined that she was not able to process the information that was given to her. That’s not to say she couldn’t talk. As the procedure continued she began to say, then shout, with great clarity,

                “Stop it!”

After the fourth or fifth ‘Stop it’ I stopped. Another five to ten minutes and I would have reached the caecum. I was already seeing signs of bleeding, trickling down the walls of the bowel from a lesion further in. I could get there, I had no doubt about it. I could make a diagnosis and perhaps even stop the leakage of blood. But it would mean at least five minute of pain, inflicted against her clearly expressed wishes.

What should I do? I asked the two nurses. They shrugged, uncomfortable with their patient’s pain but experienced enough to know how important it was to find out what was causing the bleeding.

This was the question I had to ask myself. Did I think that it was better for the patient to suffer for as long as it took me to find the problem and seal the blood vessel, to be saved further transfusions, or achieve instant relief by removal of the camera, thus forfeiting the chance of a cure. It was up to me. Present pain (audible, visible, horrible to witness) versus future health (theoretically).

I carried on. I usually do. It had been discussed with the family. Her doctors had considered the pros and cons of the procedure in some depth. I explained this to the more doubtful and distressed of the two nurses, and together we got the frail old lady through it.

I found nothing. We never made a diagnosis.

I went to see her the next day, and introduced myself. She remembered nothing. Is amnesia the same as analgesia? I don’t think so. She suffered in that endoscopy room, at my hands.


I explained some of these thoughts to my niece at a later date, but I didn’t make much of an impression.  The pain was very real for her too, and her opinion, as an ‘innocent’, unbiased by the utilitarian, task-oriented approach that doctors sometimes take, seemed very valid. Whatever the justification, we – the team, her relatives, me – judged that she would have wanted to trade pain for the chance of cure. The more I reflect on this equation, the more I doubt it’s solution.  As our patients become older and less able to give informed consent we are going to have to address this issue in greater detail. Every disease has a treatment. We are used to analysing the ratio of discomfort to benefit for our patients, but the more I treat such ‘very’ elderly patients, the greater the weight I give to the present rather than future state of health with which we choose to justify pain.   

Paternalism at the end of life: a narrative from two angles

The Liverpool Care Pathway (LCP) debate has brought to the surface an ever-present concern that doctors have a tendency to make decisions unilaterally. The suspicion that important decisions are being made without the involvement of  patients or relatives has led to accusations of paternalism and arrogance. My intention in this article is to show that this perception is, in some instances, mistaken. This is because behaviour may be interpreted incorrectly, and there may be insufficient understanding of the decision-making processes behind those apparently arbitrary behaviours.


A chain of events will be described from two points of view:

– a dying man’s daughter

–  a junior doctor involved in the decision to commence the patient on the LCP  


First, we hear the relative’s version.

“I knew my Dad had incurable cancer, we all did. He was two weeks out from his latest course of chemo when I heard from my brother that he had gone downhill. We went to see him and he looked awful, but he was talking, chatty even. And eating well. A bit yellow, which he hadn’t had before.


“We called an ambulance and I stayed with him for seven hours while he was seen, going through A & E (quite quickly actually), then arriving on the admissions ward. He was given fluids and these really perked him up. The doctor said he might have developed some kidney damage, and the blood tests showed definite liver damage. But we knew about the secondaries in the liver…they had looked stable on the last scan though. I went home. Next day I went in after work to see him and he was on the same admissions ward.


“I didn’t see the consultant in charge of that ward, it was very busy, but a cancer doctor we hadn’t met before did come to see him, or so I heard. He cancelled the next chemo session which wasn’t surprising. After that I don’t know what happened. He was transferred to another ward that night. I rang the next morning to see how he was getting on, and the nurse on this new ward said he was worse, more yellow, more drowsy. She didn’t talk about him dying. I said I would be in after work, and I got there by half-six but it took me another half an hour to find out where the new ward was. And he looked awful, really dehydrated. And more yellow.


“The nurse asked me if I had spoken to the doctor, and mentioned that the consultant had come round that morning. But no-one had called me. And there were no doctors on the ward, I think they’d gone home by then. I asked about the kidneys and she said they had got worse. The bag of fluid was gone, and I asked about that. The nurse said his cannula had come out accidentally, and because he was on the LCP they didn’t want to put another one in. That’s the first I heard of the LCP.


“That’s why I’m complaining, no-one spoke to me about it. They just decided, on their own, these doctors who had never even met him before. They decided that it was time for him to die. He was supposed to have another two chemo sessions, we were still hopeful. The papers are right to bring this up, it’s awful. He died the next day, early in the morning. I spent the whole night with him, they didn’t mind on the ward…but he was asleep…I hope he could hear me.”


The medical background

Mr Penny is known to have advanced bowel cancer with liver metastases, and despite ongoing chemotherapy has been admitted with a swollen abdomen and jaundice due to increasing burden of disease in the liver. Infection is quickly ruled out, but there is significant renal failure, likely due to dehydration. No other reversible causes for his deterioration can be found. The patient appears to have entered the final stage of his illness. 


The medical admission unit team contact his oncologist, who agrees over the telephone that no further life prolonging treatments are possible. He offers to visit Mr Penny after his morning clinic, and documents in the notes that further chemotherapy is inadvisable. Although Mr Penny can hold a brief conversation it is not possible for him to engage in a detailed discussion.


Mr Penny has now arrived on a medical ward after one day on the medical admission unit. The time really has come to focus on his comfort and not be distracted by other treatments or interventions that will bring about no meaningful improvement. He has stopped eating, but does sip at tea now and again, and occasionally nibbles on biscuits. To receive enough nutrition for his bodily needs, from a calorific point of view, a tube would have to be inserted in his nose.


The junior doctor’s narrative

The medical consultant responsible for the ward embarks on a ward round with his SHO (qualified for 18 months). They approach Mr Penny’s bedside. He is thin, jaundiced and sleepy – semi-comatose in fact. As the consultant leans over he asks if Mr Penny can hear him.  Mr Penny opens his eyes, meets the doctor’s gaze and appears to focus, but after thirty seconds he drifts off again. Pressing on his abdomen the consultant feels an enlarged, knobbly liver beneath the layer of fluid.

“He’s dying isn’t he?” he says, having edged away to where the curtains separate the bays.

“That’s what was handed over to me.” says the SHO.


“Stable actually.”

“Do you know when the last CT scan was?”

“Two months. Stable disease then.”

“Well it’s not now. Has he been properly awake sister?”

“A few groans.”

“He should be on the LCP shouldn’t he?”

“I think so. He looks as though he’s got a couple of days at most.”

The SHO nods too.  She hasn’t seen many people die, but Mr Penny certainly looks close. All agree that the LCP is appropriate.


The consultant checks the drug chart and crosses out any irrelevant or unnecessary medication. These include a course of antibiotics for a chest infection that the admitting doctor thought he might have, but which was not confirmed on X-ray. There are also four cardiac tablets that were prescribed seven years ago when he had a heart attack. They will make no difference to him.


The consultant asks the nursing sister which family members have been seen on the ward. There is a daughter who attends when she can, usually later in the day. She is fully aware of her father’s terminal condition but the nurse has no idea if she knows how close to death he is. It is arranged that the paperwork will be completed by the SHO after the ward round, but her consultant emphasises how important it is for the daughter to be informed. Then the small team moves onto the next patient.


At the end of the ward round the consultant leaves and the SHO examines her list of tasks. There are many of them…and it was made clear to her that the urgent clinical tasks should be prioritised. It takes her two hours to complete them. When she returns to the ward, after lunch, the nurse in charge gives her a fresh LCP document and asks her to complete the medical sections. She looks at those paragraphs that remind and require the medical team to check that the next of kin has been informed and are in agreement, but she cannot fill them out or tick those boxes because she has not yet spoken with the patient’s daughter. Nevertheless she feels that it is important to complete the document because the decision has been made, and the care that her patient requires is encapsulated within it. She asks the nurse to contact the patient’s daughter and request that she attend as soon as possible. A message comes back that the daughter will be arriving at 6:00 or 6:15. The SHO was planning to leave at 6:30, having committed to a Zumba class (she is aware of the juxtaposition, of the trivial and the grave, and accepts that she may miss it).


At 4:30 the SHO passes Mr Penny’s bed and focuses on the task of communication again. Should she ring the daughter? She sits at the nurses’ station, opens the notes and reads the home, work and mobile numbers. She lifts the phone, but hesitates.  What if Mr Penny’s daughter is in an office, with colleagues?  Or in a meeting?  What are the right words? She will be here in two hours, at the latest.  Should you tell someone, over the phone, that their Dad is dying?  She puts the phone down, and stares out the window, flummoxed. Her bleep goes off.  Another patient, on another ward, has become unstable and it takes an hour to administer urgent treatment and transfer the patient to intensive care. This causes delays in all the other tasks and by 6:00 the SHO is well behind. The conversation with Mr Penny’s daughter has been relegated.


The SHO arrives back on the ward until 6:30. She has tried to hand over some of the jobs to the doctor covering the evening shift. She cannot find someone else to have the conversation, for it requires someone who knows the patient well. It crosses her mind that the consultant could have offered, but he made it clear that he was in meeting at lunchtime and in clinic all afternoon; to be fair he did say he could speak with the family at ten o’clock next morning.  Should she not complete the LCP?  Mr Penny has been comfortable all afternoon and has required only one small injection of morphine for abdominal pain due to the swelling with his liver. The LCP is not needed for morphine to be given, its absence does not stop any palliative treatment.  But the nurses keep asking for it to be done…that was the plan on the ward round, that is what is expected.


At 6:30 the junior doctor walks up the ward to see if the Mr Penny’s daughter has arrived but the chairs around the bed are empty. She knows that the parking is terrible around the hospital. And then her bleep goes off again and she is called away. She never comes back to the ward. She leaves for home at 7:30 and in all honesty the arrival of her dying patient’s daughter slips to the back of her busy mind. She hopes that when the daughter arrives a well-informed nurse will talk through the current situation. There were no indicators that the man would deteriorate quickly overnight. The necessary conversation can be had next day. It can wait.

Next day the junior arrives for work and suddenly remembers the importance of her mission. She walks past the nurses’ station and heads to the end of the ward. She sees that the bed is empty. She asks the nurse what happened and sees that she has a grim expression.

“What happened?”

“He died early this morning, around 8:30. His daughter came in last night, you missed her I think, and she stayed all night.”

“Was she OK?”

“No. She got quite distressed when she found he could hardly speak…and his breathing had become really shallow. She was present when he died at least, but looked really unhappy when she learnt that he was on Liverpool Care Pathway. Said the decision to do this had been taken without her consent or knowledge. I think she’s going to complain.”



[This is a fictional but illustrative case.]

Missed opportunities: the diagnosis of dying and the risks of delay

Controversy over the Liverpool Care Pathway (LCP) has crystallised the issues of prognostic accuracy, futility and treatment burden at the end of life.

The Telegraph, on the 29th October 2012, summarised current areas of concern, which included:

  that it is impossible for medical staff to predict when death is imminent – so the decision to start the LCP is at best guesswork and at worst a form of euthanasia imposed without consent

 –  that by removing all drips, especially fluids, the diagnosis of death becomes self-fulfilling

It is suggested that premature introduction of the LCP, before all therapeutic avenues have been explored or given sufficient time to work, leads to avoidable deaths. Some say the LCP should only be introduced once a fatal outcome has become absolutely certain. Moreover, because there is no infallible way of diagnosing impending death, it might be safer not to use it at all, but to let death arrive in its own manner while we continue to treat actively in the hope of achieving a cure. In that way palliation – the cessation of antibiotics or other futile therapies, the withdrawal of artificially administered fluids and food, and the use of sedating or painkilling drugs, cannot be said to have eradicated the chance, however small, of survival.


Diagnosing Death

The diagnosis of dying is certainly unscientific. Estimating the duration of its approach, coping with its capricious tendency to retreat and re-group before a final advance, talking the patient or their relatives through this period, are huge challenges. There are some generally accepted signs of impending death, and critics of the LCP would have us wait for these to develop before converting to a palliative paradigm. Such signs include labile pulse rate and blood pressure, hypothermia and poor temperature regulation, sweating, pallor, cyanosis, irregular breathing patterns, audible airway secretions and confusion. These are the signs of dying, certainly, but I would suggest that they are not a useful guide. By the time they develop we may have missed the chance of providing comfort and avoiding harm.  

The challenge we face is not in recognising death as it happens, but in knowing at an early stage whom death has marked out. It is these patients who are at risk of receiving prolonged and aggressive treatment that will prove ultimately futile. The suffering that elderly patients experience as a result of their treatment is the ‘burden’ that doctors have become so concerned about. Significant pain, inadvertant injury, or even low level ‘run of the mill’ discomfort and indignity are difficult to justify if the end result is certain death.

It is this ‘pre-pre-terminal’ phase that demands our attention. We cannot afford to make mistakes in its identification, for the stakes (avoidable death) are too high. Patients who were put on the LCP before the signs of dying had become manifest, only to improve and survive, those who ‘defied’ their doctors, proved to sceptics that the LCP may be a lethal tool. These cases (link to examples 1 2 3) helped ignite the current furore. Because no doctor is always right, it is quite possible that nervous clinicians will now delay the LCP until the signs of death are irrefutable, unwilling to rely on their clinical experience. The result may well be more treatment, for longer. The overall burden of futile treatment may rise.

Withdrawing active treatment vs failure to escalate

Critics of the LCP are uneasy that active treatment can be withdrawn before the signs of dying have revealed themselves. Honesty is needed here. In many cases a decision will already have been made not to ‘escalate’ treatment even if improvement does not occur with first line therapies. An example would be limiting therapy for pneumonia in a very elderly patient to antibiotics and oxygen via a face mask but not transferring them to intensive care for mechanical ventilation; or attempting to kick start failed kidneys in a 90 year old with fluids, but not offering the life-saving option of dialysis. If basic therapies prove ineffective and it is decided to convert to a palliative approach, the withdrawal of those failed first line treatments (eg. antibiotics and fluids) is no worse, in my view, than not escalating. So, while criticising the removal of an IV cannula or nasogastric feeding tube (visible actions, commissions), it must be borne in mind that more effective interventions may well have been withheld (invisible omissions). The essential point is that treatment has failed and its continuation will make no difference to the chance of survival. Only measures that increase or preserve comfort can be justified.

Could this failure of escalation be a conspiracy to under-treat? One might portray it that way. But if we did not set such limits every single patient would pass through intensive care before being allowed to die. They do not, because we have made a calculation, that the burden of such super-aggressive therapy is disproportionate to the chance of success. There is no generally accepted metric, no reproducible equation with which to benchmark these decisions. Each calculation is made using unique data – medical history, comorbidities, functional ‘reserve’…and of course what is known or can be ascertained about the patient’s preferences. At the end of the day it comes down to medical experience, lessons learnt from seeing hundreds of patients go through similar experiences. 


We must be honest too, in admitting that there are questions of resource to be taken into account here. A society that makes almost infinite demands on its health service must agree where to draw the line…and offering hi-tech, complex and prolonged organ support to those with multiple co-morbidities, or those who are near the end of their natural life, is one of them.

Saving lives – our primary aim

The LCP debate has unfortunately focused the public’s attention on many negative aspects of medical care: treatment failure, futility, decisions on who not to treat, treatment withdrawal. It should be emphasised that doctors devote more of their time to treating than not treating, and are always looking for opportunities to save life. We are optimists, and are more likely to over-treat than under-treat, with a tendency to increase the burden of treatment in the hope that a patient will gradually show signs of improvement than make a hasty decision to withdraw. But we cannot escape the fact that with an ageing, comorbid population we will do a disservice to many patients if we treat indiscriminately. It is a poor doctor who sees only the disease and not the whole patient, who uses every therapy, technology and resource even as patients continue to deteriorate, and who ‘flogs’ a failing, weakening body with no thought for the pain or discomfort that is being endured.

Quality of life assessment and DNACPR decisions: unsafe, but unavoidable

There has been much discussion about ‘quality of life’ (QOL) judgments in DNACPR decision making recently. As the doctors censured for including ‘Down’s syndrome’ on a DNACPR form have learnt, it is never wise to refer to QOL. Such an assessment implies that the patient’s life, either now or following resuscitation, is insufficiently ‘good’ to warrant continued existence. That is clearly inappropriate. It is also perplexing, because I remember clearly that DNACPR forms used to include a box labelled ‘poor quality of life’ for us to tick!  The habit of considering QOL remains with us – and I would contend that it is important we do not ignore this aspect, for the assessment of quality remains highly relevant.


It is far safer to use ‘CPR likely to be ineffective’ as justification for a DNACPR decision. This is a far more concrete. The patient is debilitated, has a weak heart, terrible lungs…you can confidently predict that cardiac massage or electric shocks will not restart the heart. A binary outcome…alive or dead, no grey areas, no pejorative forecasts. Not so. The fact is that in making this ‘efficacy’ prediction we do in fact make a QOL calculation. ‘Ineffective’ merges with ‘poor QOL’, and they cannot be separated.


The overlap exists because resuscitation frequently does result in a restoration of the heartbeat. Life continues, but unless the patient wakes quickly, is able to breathe off a ventilator and has a blood pressure sufficient to perfuse their organs without infusions, its quality will indeed be poor in the short term. This is a worthwhile sacrifice if the end result, after days, weeks or months in intensive care, is discharge home to the care of loved ones, but statistics show that this is rare. So, although doctors may say that resuscitation will not work, they know that in a reasonable number of cases it may in fact cause the heart to restart. But they have made a judgment that the burden of treatment, be it the initial resuscitation or the inevitable admission to intensive care that must follow, is not outweighed by the potential benefit.


We can debate the fallibility of quality, and criticise those who fall into the trap of referring to it on paper, but we are dishonest if we deny making quality judgments when making DNACPR decisions.