Month: November 2012

Back to the source: a response to Patrick Pullicino’s Liverpool Care Pathway paper


Why do this?

This paper, published by Professor Patrick Pullicino in the Catholic Medical Quaterly (Volume 62(4) November 2012, online journal), represents the intellectual foundation on which the current, frequently destructive debate about the LCP is based. The research into prediction, prognostication, treatment withdrawal and misapplication formed the basis of a lecture at the Royal Society of Medicine in July 2012. This meeting was convened by the Medical Ethics Alliance.

As a general physician, gastroenterologist and hepatologist I have been and always will be involved in the care of dying patients. Although I am not a palliative care specialist, and although I do not have detailed knowledge of the evidence for or against the LCP, I do feel that I am qualified to make this response. For I am one of thousands of doctors who have been accused, implicitly, of practising euthanasia.

I have not attempted to submit this critique to the Catholic Medical Quarterly as correspondence.

In this article I summarise each of the paper’s section in turn and then present my own criticisms in italics. I have deliberately avoided trying to mount a full scale defence or overall justification for the LCP, choosing to limit myself to the points raised in Pullcino’s paper. Excellent articles extolling the LCP have been published elsewhere. It may be helpful to open the original paper in a separate window while reading this.

Introduction No comments.

Prediction and Prognostication The difference between these two terms is discussed. Prediction represents an individual clinician’s ‘educated guess’ of a patient’s expected survival, whereas prognostication is based on objective data and statistical modelling. It is emphasised that data does not exist to allow accurate prognostication in the ‘short term’, ie. the ‘final hours and days’ for which the LCP is designed.

Seeking to highlight prognostic scores that address patients with very short term survival prospects, he describes the Palliative Prognostic Score. This study split patients into three groups according to their estimated survival, median duration being 76, 32 and 14 days. 30 day survival probability for the latter group was 17%. He then mentions a nomogram (by Felieu J et al, 2011) which gives a 15 day survival probability, but points out that it was inaccurate a third of the time. ‘In this study, in a quartile (99 patients) of mean survival 10 days, over 10% survived much longer, with survival up to 200 days.’

These important observation force those of us who use the LCP to examine our thought processes. Are our prognostic/predictive skills really as bad as the literature would suggest? I know of no-one who uses prognostic scores and objective criteria on the ward. The diagnosis of ‘dying’ is indeed a subjective exercise, its accuracy increasing as patients display more and more typical clinical features. On further reflection however I concluded that the studies described are not particularly relevant to clinicians treating patients at the very end of their lives. What we are required to is recognise dying and manage it, not predict that dying will occur a week, two weeks or two months in the future. The question we must ask ourselves is ‘do we diagnose dying accurately?’, not ‘are we good at determining how long this currently stable patient will survive with this illness?’

Literature search The author states that no sources could be found to describe the use of prognostic scores within a ‘very early time frame’

No comments

Clinical factors associated with withdrawal of care This brief review concentrates on a study of organ support withdrawal in 15 intensive care units. It was found that subjective factors related to physicians’ perception of survival probability, potential cognitive deficit and substituted judgment of the patients’ view on resuscitation, but not age, prior functional status, illness severity or organ dysfunction were independently associated with the decision to withdraw. An accompanying editorial explored this phenomenon, raising concerns that physicians were ‘creating a self fulfilling prophecy’; ie. deciding that death was inevitable and facilitating it’s evolution.

The author then describes a study of patients with neurosurgical emergencies, reporting that survival was improved with aggressive surgical management and intensive care support. He concludes the section with ‘Practitioners tend to be overly pessimistic in prognosticating outcome based upon data available at the time of presentation.’

Although a discussion about the power of physicians’ opinions in end of life scenarios is valuable, and the danger of the ‘self fulfilling prophecy’ is of particular interest, I did not feel that studies of ICU patients were relevant to the LCP. The vast majority of patients put on the LCP do not have organ support withdrawn.

Care of a patient put on LCP A patient was admitted under the author’s care and put on the LCP by a trainee in the context of apparently intractable seizures. Next day the author determined that the relatives were not in agreement with it. LCP was withdrawn. The patient was discharged and survived for three months at home with maximal support for activities of daily living.

The error here appears to have been a lack of communication. The LCP was not applied correctly, and the author’s subsequent cancellation of it is not therefore surprising. The fact that the patient survived also demonstrates that the prediction, or prognostication, was inaccurate. My take on this case was that ‘intractable seizures’ is an unusual circumstance for the use of LCP, and the ‘diagnosis of dying’ all the more difficult. It is not surprising that the author was motivated to investigate the LCP following this experience. I wondered if the author’s experience of LCP in a non-medical specialty had led to a skewed view of its benefits and risks.

Conclusions The author states that there is no scientific evidence ‘to support a diagnosis that the patient is in the last hours or days of life.’ He then moves on to state that without an evidence base use of the LCP equates to an Assisted Death pathway. He highlights the very subjective decision making process, and recalls the problem of the self fulfilling prophecy.

The author then makes this hugely controversial statement: ‘If we accept to use the LCP we accept that euthanasia is part of the standard way of dying in the NHS. The LCP is now associated with nearly a third of NHS deaths. Very likely many elderly patients who could live substantially longer are being killed by the LCP including patients with “terminal” cancer, as the above research shows. Factors like pressure of beds and difficulty with nursing confused or difficult-to-manage elderly patients cannot be excluded as biases towards initiating the LCP.’

The full import of this statement is explored below, but even if the accusation of euthanasia is overlooked, it must be emphasised that no evidence has been provided to support an overall rise in mortality since the LCP was introduced.

Other statements include:

‘Starting a patient on the LCP, is an abandonment of evidence-based medicine in a critically-ill section of the hospital population’

Patients reaching the natural end of their lives are not critically ill.

‘Nursing of elderly patients who are on the LCP in proximity to those in whom evidence-based medicine is determining care, is confusing to junior medical staff and nurses alike’

Although deserving of attention, there is no evidence for this.

‘Use of the LCP is likely to have negative effects on elderly patients in particular, who are not on the LCP and to undermine the doctor-patient relationship’

This has certainly come to pass: trust between patients and doctors has been eroded during the LCP debate.

General critique

Defining prognosis and prediction is useful, although the difference between the two may seem rather semantic to many. As I have mentioned already, I am not sure that an analysis of our skill at prognostication is relevent to how we use LCP, the use of which is triggered by signs of possible dying. Nevertheless, if the LCP is perceived to guarantee death, it is very important that we identify dying patients accurately. Is this an achievable aim? Probably not. Should this admission result in abandonment of the LCP? Probably not. No methods of medical assessment, and no therapies, are 100% accurate or successful. As long as patients are reviewed regularly, to ensure comfort and to confirm the impression that the they are in fact dying, we should be able to minimise the risk of erroneous diagnosis while ensuring that the vast majority of patients benefit in terms of comfort.

It is the lack of evidence supporting the exercise of prognostication that drives this paper. The evidence that does exist in support of the benefit that patients derive from the LCP is not discussed. I think recognition that some evidence exists supporting the LCP would have added balance to this paper (for instance this ‘cluster trial’ – courtesy of Katherine Sleeman, Clinical Lecturer in palliative care, KCL, Cicely Saunders Institute).

Another area deserving discussion is that of communication. Prof Pullcino’s paper touches on this only briefly, during his description of the man with siezures, and I wonder if a greater focus on family conversations would have increased its relevance in this regard.

My overriding objection to this paper centres on the use of the word euthanasia. It is suggested that widespread use of the LCP equates to institutionalised euthanasia, and implicit in this is an accusation that individual practitioners have killed their patients. To read this, as a doctor who has used the LCP, is very difficult. The accusation is made in the conclusion without any supporting evidence. The ‘evidence’ that is reviewed in the paper does not touch upon intentional killing. If we are regularly making inaccurate predictions (or prognoses), that is of course unacceptable and must be addressed, but the term euthanasia suggests that we are intentionally killing our patients. There is absolutely no evidence for this.

This paper, and the thoughts behind it, sparked a huge controversy over end of life care in this country. I think it is methodologically weak and structurally flawed. I think it contains baseless conclusions, and is excessively liberal with emotive, hurtful accusations of intentional killing.

Acknowledgment: Dr Rita Pal alerted me to the paper’s online publication and has been helpful in researching details on the original RSM presentation.



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.   

A soft task hard to do: why we fail in engaging relatives at the end of life

Every controversial end-of-life decision that I have read about in recent months has had one thing in common: inadequate communication. They appear to have progressed to the courts or the newspapers because doctors made decisions without ensuring that families were in agreement. The most frustrating aspect of these widely publicised cases is the realisation that half an hour spent in a quiet room discussing the reasons, explaining the pros and the cons, might have halted the subsequent polarisation of views. The fact that the decision was being made to protect the patient, and not bring forward their death, could have been emphasised. The family’s understanding of what their loved one’s probable view on the subject could have been explored. An ambivalent or frankly negative response might have alerted the team to the fact that their patient’s family had a concrete view on resuscitation or end of life care.* Having tested the temperature, the medical team could have stepped more tentatively into the ethical waters that were soon lapping over their beleaguered heads.  


Here I explore some of the reasons why doctors sometimes fail in the task of engaging families in end of life discussions.


 1) The pressure to make early decisions  

In 2012 a report published by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) called ‘Cardiac Arrest Procedures: Time To Intervene’ showed that there are systematic weakness in our care of patients before and after cardiac arrest. They reviewed the notes of hundreds of patients who had arrested and undergone cardiopulmonary resuscitation. An important component of this poor performance was inadequate identification of frail patients who are not likely to survive resuscitation. Essentially, we are attempting to resuscitate too many patients. The investigators found that only 52 of 552 patients had a DNAR decision, but at least 196 should have based on the clinical information available. Potentially therefore, those without a DNAR decision were subjected to resuscitation attempts that were always going to have a very low chance of success.


Mr Bertie Leigh, Chair of NCEPOD, wrote in his foreword to the report:


‘Alas, the results are profoundly disappointing and as I read these pages I wondered how many of these interventions would be defensible if charged as assaults before the criminal courts, or as professional misconduct before the GMC. The GMC recognises that CPR should be administered in an emergency, but it is not good medical practice to fail to anticipate the needs of the patient before an emergency arises. If the failure is deliberate or reckless then I suggest that it is arguably criminal. In the overwhelming majority of cases the question of CPR was not raised with the patient before the arrest…’


The NCEPOD report has resulted in an increased awareness that delayed resuscitation decisions reflect bad organisation and bad practice within hospitals. The pressure is on, to make these decisions soon after admission, in the first 24 to 72 hours. The question is, are doctors equipped to broach end of life subjects at such an early stage? And are families going to be prepared for it?


2) The nature of emergency

Emergency medicine presents specific hurdles to good communication. Patients themselves are often too unwell to engage. Due to the unforeseen nature of their presentation, perhaps in the middle of the night or the early hours of the morning, the most important members of the family are frequently absent. Phone calls can be made, but if a patient is deteriorating quickly and the doctor’s strong conviction is that resuscitation would be useless, a DNAR form will have to be completed – even without a discussion. Resuscitation decisions can usually wait until the next day of course, but even then it is challenging for doctors in this early period to arrange the necessary meetings. Visiting hours can be restrictive. Senior team members may be tied up elsewhere, in clinics or meetings… NCEPOD investigators were unsympathetic to this argument:


Only a minority of patients in this group had a cardiac arrest within 12 hours of hospital admission and that most were in hospital for one or more days. Lack of time appears to be a poor reason not to have made decisions about CPR status in this group.’


So much for the pressure of time. It is a weak excuse. Arrangements can always be made if sufficient priority is given to a task. It is the question of priority that cuts to the heart of this problem. Why don’t doctors perceive these conversations as important enough to reschedule other, more routine commitments?


3) The business of a ward round

The primary aim for any acute medical team on a ward round is to see each patient on their list, make a comprehensive, accurate assessment of their problems, and formulate a management plan. If they do not manage to see those patients in the allotted time
they will have failed. Following this, they must effect the decisions generated by each of those assessments. These are physical tasks that have immediate, or very short term, visible consequences. A septic patient needs another blood culture. A feverish man with confusion requires a lumbar puncture. An abdomen that is full of fluid requires draining. A phone call to a GP, to obtain more background history. A referral to the neurosurgeons. These tasks are important – if they are omitted the junior doctor will be answerable and the senior doctor embarrassed. The patient will not have progressed, their symptoms will not have been relieved. Their length of stay will be extended.


The significance of a family conference may pale in comparison to such ‘hard’ tasks.


4) Medical simplicity, emotional complexity

In many cases the question of resuscitation is so obvious that, to put it crudely, the decision is a ‘no-brainer’ for the medical team. A quick perusal of the medical notes, combined with a glance at the patient from the end of the bed, may be enough to persuade the team that resuscitation would not only be medically ineffective, but unkind. When the clinical impression is so immediate and strong, the need to relay this information to the family may appear less important. Where is the controversy? The family will undoubtedly agree, it’s a clear cut case, isn’t it? Hasn’t the patient been deteriorating for weeks at home, under their very gaze? Surely they won’t require a detailed explanation…

The mistake here is the assumption that something so medically uncomplicated will be equally straightforward from an emotional point of view. This error reveals a lack of empathy – or what I call ‘extended empathy’, an emotional exercise that demands an appreciation not only of the patient’s feelings, but of the family’s too.


5) Coasting

The number and complexity of medical tasks that are generated during a ward round has been mentioned already. The focus of the medical team is to identify pathology and to reverse it. Those tasks require concentration and application. Details cannot be missed and omissions cannot be tolerated. Junior doctors must navigate their way through unfamiliar systems in large organisations to get things done. But if the battle for a patient’s life appears to be lost, and death becomes inevitable, the level of concentration required diminishes.


I would argue that doctors drop into a lower gear when managing the dying. The pressure, to save life, is off. No harm can be done now (except perhaps an inappropriate resuscitation attempt). The intense focus on defeating disease fades, and it is possible that other, equally important but physically less tangible tasks, are sidelined. This is not to say that the needs of the patient or their family are ignored, just that in the never-ending pressure to identify and hold disease in its tracks, smoothing the way for a cart that has already slipped its harness and is rolling inexorably down the hill appears less critical.


6) Brutalisation

This word was used in a well-known newspaper to describe society’s attitude to death in the elderly population.


‘The Liverpool Killing Pathway is driven not just by crude economic calculation but by a wider brutalisation of our culture, at the heart of which lies the erosion of respect for the innate value of human life.’


I took this personally (which doctor wouldn’t?) and immediately rejected the word. But the more I reflected on the reports of poor practice elsewhere, the more I began to fear that the accusation contained a kernel of truth. In 2007 I published a paper called ‘The Absence of Sadness: Darker Reflections on the Patient-Physician Relationship’ (unlocked, J Med Ethics) in which I described how exposure to death and suffering can result in a neutral emotional reaction to death. It is of course a cliché that doctors slowly become nonchalant to death, but it cannot be denied that in order to cope with the incessant stream of death that flows through their workplace  they do develop ways of compartmentalising tragedy. Perhaps an inevitable consequence of this is a failure to appreciate how much time is required to explain each one, and how important it is involve those family members who are affected by it.


If death is no longer remarkable to a doctor it is not surprising that they cannot prioritise the need to communicate and explain its arrival to a patient’s family. If it appears routine then their approach to the task of talking will be just that – routine.


It would seem impossible to the right thinking observer that doctors can develop such inhuman frigidity, but we must consider the possibility. But we must also sympathise with a tendency to become unfeeling in this way. This is because death is indeed routine. Patients come to hospital to die. It may not be the best place for them to do so but it is frequently their final destination. Even if death is expected, in say a nursing home, it is of
ten too much to expect the family or General Practitioners to manage it. So ambulances are called and patients are admitted. Frequently the fact that they are dying is no surprise at all. Not to the doctors involved, not to the family.


This is not to say that a detailed and sensitive explanation as to what might happen on the wall is not required. But for the doctor who has been asked to assess a dying patient, and who quickly concludes that this is the natural end to their life, it is hard to conjure up instant feelings of sadness that might then transform into a recognition of the need to communicate. There may be no sense of urgency. Only if the doctor becomes aware that the family are on a completely different page, and have no idea how close to death the elderly relative relative is, will the need to engage them become of paramount importance. 


So what haven’t we covered…oh, that’s right…the patients and families themselves! But this is where my analysis must end. I can make a stab at understanding how doctors feel and behave, but those on the other side of the curtain, well, that’s an infinitely variable world. To understand how they will react to end of life conversations, and how open they might be such approaches, we need to take into account education, religion, grief and personality, and that is beyond the ambition of this essay.




* This is not to say the medical decision would have been altered or reversed, but in offering a more detailed explanation, or agreeing to revisit the subject after family had been given time to reflect, the clash of opposing views might have been softened.



Recent controversial DNAR cases include those at Addenbrookes and Queen Elizabeth the Queen Mother, Margate. Links to Liverpool Care Pathway reports can be found in earlier posts in this blog.









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.