“Challenge everything”: A junior doctor questions the LCP

When a new junior trainee attended for his first clinical supervisor meeting I asked him to challenge what he saw on the ward, and not to be afraid to slow down the pace of things if he felt that his patients’ needs were not being met. A week later he stopped the ward round to ask me why an improving patient was still on the Liverpool Care Pathway (LCP). In the ensuing discussion we pulled the LCP apart and put the pieces under a microscope.


The patient was 89 and had advanced dementia. She had been living in a residential home, requiring assitance with most daily activities, and was admitted following a fall with signs of a chest infection. There were also features of significant malnutrition. The home reported that she had been eating less and less there. Despite treatment with antibiotics and fluids for 5 days she deteriorated and stopped eating completely. When she tried to drink, liquid tended to tip into her windpipe and cause her to have further breathing problems. She could not cooperate with physiotherapists and the nurses stopped helping her into the bedside chair. She could no longer communicate, but appeared uncomfortable if she was not in bed. She just lay there. On one occaasion ger temperature was found to be 34.8 degrees C (markedly low), even though the infection had been treated. I decided that her dementia had progressed, and that she was now dying.


We discussed the LCP with her son and discovered that he knew all about it. He agreed that the time had come to concentrate on comfort. The paperwork was completed. Two days later, on the next consultant ward round, we found her sitting up, relatively alert, and able to tell us that she was hungry and thirsty. I thought carefully about whether to take her off the LCP but decided that she should remain on it, with daily review.  The speech and language therapist was still concerned that should she drink there was a risk her lungs would be contaminated, but I asked the nurses to give her thickened fluids if she asked for them. The house officer wrote in the LCP booklet, looked at me quizzically, and asked –  

 

Why is she still on the LCP?

That is a very good question. It’s not uncommon for patients to appear to rally after a few days, on no treatment, and it’s a real challenge to know how to respond.

She seems to have improved. Shouldn’t we treat actively again?

We have to ask ourselves – does this improvement represent a genuine reversal in her medical condition?

But she has improved.

She has rallied yes, but has her underlying condition actually reversed?

Well, she was moribund, but now she is talking.

But look at the amount she’s eating and drinking. Close to zero. Not enough to sustain life. So, really, she is at the place she was a few days ago just before she became completely unresponsive.

But isn’t there a chance of further improvement?

We can’t expect her to become better than she was after her infection was treated. At the moment she is alert but she cannot eat or drink enough to sustain life. So we have two ask ourselves what we would achieve for her by escalating her care again. If we put a drip back up to give her enough fluid to survive, what are we expecting her to do?

Couldn’t we could try to get her back to the home, after a few days of building her up?

But we know that whatever we do she is unlikely to ever be able to eat or drink enough to survive in the medium term. It is her dementia that is doing that, and her dementia is truly irreversible. Should we feed her artificially? Well, if we give her extra fluid now, or a nasogastric feeding tube, we will sustain her life for as long as we choose to continue those treatments. But at some point we are going to have to withdraw those treatments.

Why?

Because it is not possible to send a patient with such severe dementia home on an intravenous drip or with a feeding tube in place. A drip means you have to be in hospital. A feeding tube is positively dangerous if you are confused and don’t understand why you have it…which she wouldn’t.

What about a PEG tube? [a feeding tube inserted directly into the stomach]

That is a good question, but we know from large studies that even inserting a PEG tube and guaranteeing sufficient food intake does not extend life or stop things like bedsores or infections. It seems counterintuitive but it is true.

But I don’t understand how we can ignore her improvement.

I know it’s difficult. But I feel that even though she appears to have improved her prognosis has not changed. She truly has end stage dementia and although the signs of dying that we saw a few days ago do not seem to have evolved, the situation is essentially unchanged. She is still a lady with advanced dementia who cannot take enough sustenance to survive.

So you think she is still dying, even though she…has improved?

I do, although perhaps not in the time frame that we anticipated. But if we now reverse our decision, put a cannula in, or a feeding tube, we will undoubtedly lengthen her life, but we will not change anything fundamentally. So now we have two make sure that her family are prepared for it, and do not challenge our perception that she is truly at the end of her life.

So while we do that shouldn’t we take her off the pathway – shouldn’t we make the assumption that life should be preserved? Isn’t that our primary role?

I did think about that…about taking her off it while we discussed with the family. But is it right to chop and change if this improvement is really only a temporary thing?  We must have the courage of our convictions when it comes to the diagnosis that we have made. You are responding to the evidence that she is now more alert, and assuming that this represents a genuine improvement in her medical condition. I on the other hand still feel that she is in the terminal stage of her dementia. Now you could accuse me of forcing fate by continuing to withhold hydration or food because in that way her ultimate death is almost guaranteed. I understand that point of view. It is an accusation commonly levelled at doctors who use the LCP. I would counter that by saying that if we now reverse our policy, we will be able to keep her alive in the short term, but it will be an artificial situation. It will be entirely dependent on the fluids (or tube feed) that we are giving. But then, at some point, we need to think about the next step. Staying in hospital forever is not an option. So be it her home or a nursing home, she will not be able to take in enough food or drink. As soon as she leaves here she will become dehydrated, and will begin to die again. So the life that we maintain here with our invasive treatments is not a fair reflection of her ability to survive. And it cannot go on forever.

So it’s up to us to decide when she can die?

Perhaps. It is up to us to recognise when her dementia has advanced so far that it is incompatible with survival. It is our job, before that, to ensure that there is nothing more acute going on – like an infection – which can be reversed.  And once we have ruled out or treated reversible causes we need to be honest with ourselves, with the family, and with the patient –  if they are  able to understand us.  We need to be clear that she has entered a terminal phase. Is it not better to accept that and discuss it openly and make arrangements for a comfortable death, or for some time at home with community palliative care, rather than maintain her life artificially and hold out for some more fundamental improvement that we know will not take place.

But sometimes we are wrong.

We were wrong here. I thought she was going to die in the next day or two, and here she is engaging and talking. But I don’t think I was wrong about recognising her still very poor short term prognosis.

And what if the family have the same reaction that I did and think that she should come off the pathway?

Then we have some explaining to do and some careful judgements to make. But at some point we have to test her ability to survive on her own, and it will then become clear. There are some other options. We should get a member of the palliative care team to give another opinion. And we should consider the option of discharging her off the LCP, and asking her GP to consider end of life care in the community if she deteriorates as we think she will. We review her tomorrow and if she has improved even more then of course, we will change tack. Are you happy? Do you agree?

I…

You’re uncomfortable. That’s good. If you become too comfortable around death you stop asking questions of yourself. I did ask you to challenge everything…you were right to.

 [identifying details have been changed]

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10 comments

  1. Nice write up Dr Berry as discussions go. My questions to you are as follows1. You give a history of a fall plus gradual lack of food consumption, malnutrition. I would therefore like to ask you a. What was her swallowing/speech therapy assessment.b. Did you CT this lady? or do you feel it was not indicated.c. Have you excluded a infarct – as is common in dementia patients. 2. You have not said whether you consulted a elderly care psychiatrist in your assessment here. 3. Did you obtain a history from her family about her functional state? 4. We both know infection can cause profound confusion – as can electrolyte imbalances. By this I refer to an acute confusional state. This often takes some time to resolve. 5. The one off temperature use is not really fabulous is it. Maybe a series? I question the accuracy of measurement on this really. I think to highlight just one number is not great. Maybe a series of numbers may be more persuasive. What is your idea here – low temperature dip in elderly patients with infection…. 6. In general, I am always concerned about your view on "quality of life". She might like watching East enders and may not communicate with you about it. Doesn’t mean they don’t have a limited quality of life.Now we are agreed that prognosis is poor BUT this does not mean the quality of life such that it is shouldn’t be preserved as much as possible.You should watch the confidentiality issue on these posts. IAnyway, interesting debate. You have a intelligent junior doctor. You should give him or her a fabulous reference for questioning you. I think everyone should question you really. One day you might discover the way you see "life" is not necessarily the right way for everyone.Rita

  2. Thanks Rita???Before answering your points I need to make it clear what this blog post was intended to demonstrate and achieve. It was written to explore general principles at the end of life (with particular reference to dementia); it came about when the kindling – quintessential elements of a common clinical scenario – met the spark of a junior doctor’s commendably questioning attitude. As usual, I cannot pretend to have written a verbatim account, and I have not provided a detailed medical case report. Because I do not write anonymously I am very careful about confidentiality. This issue inhibits much of my writing, but there is no way round it and such restrictions must be accepted.Some of your points are very specific from a medical point of view. I am not going to try to justify my management of this (somewhat fictionalised) patient, but because your points are valid I will respond to them. Sorry if you feel my need to alter details and semi-fictionalise these cases diminishes their power???but what can I do? I can???t just take cases off the ward and put them straight into this blog. 1 a. Swallowing: unsafe, hence the difficult decision about allowing feeding. The comfort and satisfaction that eating provides has to be balanced against the potential risk of aspiration. However, in the context of dying, most medical teams would allow feeding even if there was a risk of aspiration. The ???banning??? of food has caused much comment in the media???but LCP does not ban food. If each morsel causes a choking reaction then it is not sensible to keep offering it however, as the discomfort caused is counterproductive.1 b. and c. ?stroke: Medical points. All explanations for the patient???s deterioration were considered.2 Psych-geriatrics: Yes they were. A proactive elderly care psych team is essential in general medicine nowadays.3 Collateral history: Of course4 Acute confusional state: Delirium can take a long time to improve. It all comes down to whether the impression that the patient was dying was accurate or not. However, if a history of long term failure to eat, and general progression in cognitive decline, segues into complete inability to feed, and more profound cognitive inactivity, a judgment must be reached as to whether dementia has truly evolved to ???end-stage??? or there is a potentially reversible delirium element. From the tone of your points (and Tweets!) I presume you would feed the patient artificially in the hope of further improvement. But we know that feeding was inadequate before she became acutely unwell. The degree of improvement cannot be expected to improve her cognition beyond the ???pre-morbid??? (pre-hospital admission) level. If she did not eat enough then she will probably not eat enough in the future. So you would be committing to indefinite tube feeding. Studies have shown that this does extend life in this context. PEG tube insertion is no trivial matter, and the morbidiy can be significant.5 Temp: I can???t report on every medical observation or result. I meant to demonstrate that signs of terminal decline (of which low temp is one) were building up.6. Quality of life: Rita, you don???t really know about my views on quality of life. Nothing I have written on this blog betrays a harsh, utilitarian or un-empathetic approach to quality of life assessments (I believe)??? but, I am going to look into this subject in more detail. It’s crucial, and I have a feeling that public mistrust about doctors’ tendency to make rapid quality judgments is at the heart of some problematic LCP cases.Thanks as ever for helping this blog thrive!Phil

  3. Thank you for sharing this Phil. It is a fascinating clinical scenario which other clinicians have also encountered. You are asking important questions.If I may add one more question, which requires us to look at the situation from a different angle. The question is: why some patients get better? Is it because we get the prognosis wrong in the first place or something else?Four common characteristics are usually found in such cases. The ill person is:1. elderly and usually with not so good cardiac and renal function2. malnourished (even if overweight, he/she may have lost a lot of weight)3. at risk for aspiration and is put Nil By Mouth4. given iv fluidsFurthermore, occasionally, after a period of Nil By Mouth he/she is given artificial feeding.Sometimes, people with the above characteristics deteriorate, are thought to be dying, treatment (drugs, fluids and feeding) is stopped and the LCP is used to support their care.When they improve, should we be asking ourselves whether it is the discontinuation of treatment that helped them get better?I have presented similar cases in many audiences in the last 3 years.Three of these have been written in an article soon to be published, with Dr Mike Stroud as my co-author.We argue that sometimes it is the discontinuation of excessive fluids (and sometimes excessive feeding) that actually helps some of these patients get better, because it reverses the overhydration and overfeeding/re-feeding syndrome.It usually happens when people are malnourished, which I am sure your lady was and the low temperature supports this, as hypothermia is a feature of malnutrition.It is right in such cases to stop using the LCP and consider ‘eating and drinking for pleasure and comfort’ despite the risk of aspiration. More to come in April in our article!

  4. Phil Thanks for the response.1. In terms of the management… obviously its important to determine exactly what is wrong with the patient. What was the diagnosis/and or differential [ even if this is a fictional patient]. Would you have done a CT to determine her neurological status. You also fail to tell us what the examination findings could have been. 2. No one takes a "one" off reading on a temperature chart as "gospel" 🙂 You should know that. I agree that a series of low readings is indicative. 3. You write "If she did not eat enough then she will probably not eat enough in the future", What is your logic here. People stop eating for all kinds of reasons. How can her pre-morbid [ presumably with an infection] determine her future prognosis? You don’t even know whether the nursing home care was adequate or whether she just hated their cooking etc. 4. I haven’t decided whether I would go for artificial feeding. I certainly wouldn’t make rapid decisions without a dietician’s assessment. I would certainly consider an NG tube until I determined what was going on with this patient and while she is under assessment. Your write up appeared to be based on broad guesswork/speculation rather than evidence based diagnosis, prognosis. What concerns me is that you made future decisions without actually consulting her family or even the nursing/care home she was in [or you didn’t mention you did]. If I was managing this patient, I suspect I would take collateral histories first before making a valid judgment. I would then discuss my judgment with the relevant people involved. You do mention her family at one point but they don’t appear to be playing a large part in your decision making process. 5. As euthanasia is unlawful, I wouldn’t pull out all pro-active management until she was actually showing organ failure/ poor blood chemistry and very poor prognosis. . There is a point where intervention is fruitless. We are agreed on that. I would though discuss the DNAR status with the relatives. This may be an ethical debate but one cannot discuss ethics without discussing diagnosis, prognosis and best practice management. Of course, if euthanasia was legal, I would probably follow your line of thought. Rita

  5. Purely as a lay person, with a none medical background but none the less a user of the NHS and the services its provides, I would like to comment here, in particular relation to the Liveprool Care Pathway.Firstly, the protocol which the Liverpool Care Pathway, is using is being seriously abused at a number of levels. This is why complaints of murder, manslaughter and abuse have been brought. and a profound distrust of doctors is beginning to manifest itself. This is not just about the newspapers or the media, being vindictive, it is about real lives, real people and real experiences and those who feel their loved one’s have simply had their lives stolen by some cold and callous inhuman mechanism!With due respect to your profession, as a child I used to see doctors and regard them very highly, their function was unquestionable and their authority, caring and compassionate. That is not what is reflected in today. It is also not the media who demonize doctors, they are doing that to themselves and the NHS is following suit. The incapacity to respond to the public and alongside that the patronisation by the NHS is abhorrent. As users, in light of unfurling events, we simply must not trust the NHS in its capacity to care, it is simply incapable. Medical yes, care no and there is a difference!When my mum died, I experienced the cold callous indifference of this, calculating, medical approach from those who were around her and like many others I would have preferred to have taken her home than to have seen her cared for by those who are, by rights simply inhuman. The word doctor took on a highly different meaning from then on! Medical, yes, qualified yes, professional, oh yes. But not one ounce of human compassion left in their souls, all in all simply machines responding as machines do! Not one ounce of human understanding or kindness was there! Personally I pray I will never, ever fall into that kind of hands! I am only sorry my mother had to endure the three days of pain and discomfort, whilst on the last day being left to choke to death and no I have not changed my mind because of recent reports, it has always been the same. The cold, calculating indifference to human suffering was evident even when the LCP first was used and it is worse nowPeople have just become "images", something to look at, something to study, something to be abused and be denied proper medical assistance, no matter how long it takes them to die! Tick a check a tick box and then move on. Some have indeed been abused, badly abused. Some have had their legs smashed against beds, leaving severe bruising and some have been left for prolonged periods without even a drink whilst others have sucked water through a paper bag, even though unconscious, desperately in need of something to drink.This is your NHS too! But is this what you call care? If it is and it appears to be, as a user, no thank you! and I absolutely mean that. I am also sure that other people would stand right along side of me, when I say that this is NOT what WE want from OUR NHS!~I will not debate the right’s and wrongs of what medicines to give and where, what I do debate is the NHS’s right to treat human beings as if they were worse than animals Then the NHS goes on to take every right off them they have. Purely based on speculation or assumption at the discretion of the doctors, or nurses, who then leave that person to die!This is the public perception you are to creating for the NHS, in which case, you can expect doctors to be viewed with absolute and profound distrust, as well as contempt. As for the Liverpool Care Pathway itself, it is purely there to be followed rather like some cult indeed, you follow the plan, take the action, nothing further required.How far removed from care could you possibly be? The public simply cannot trust doctors, who treat them as if they were nothing more than a piece of meat on the butchers slab!It is a sad day to see just how removed care has become from what should be the best care centre in the world!

  6. Re to continue or discontinue the LCP. We faced this . No link to dementia. 89 yr old lady main problem prior to admission osteoporosis and osteoarthritis. Whilst in hospital awaiting hip revision she developed a condition documented by medical staff as " Prolongued hospital stay ! " ie waiting 3 weeks for a surgeon to become available. But as she did not receive adequate nursing care she developed many complications. Her geriatric referral not followed up by medics and nursing staff.Relatives constantly visiting and enquiring as to what was the plan .When a theatre slot became available she was declared unfit for GA. A medical Reg visited her who declared that she was at the end of her life and they planned the LCP.On the second day she woke up , was joking , chatting to her family. So as a family we questioned if it was appropriate for her to be on the LCP. The staff who were now looking after her very well didnt seem to take much notice of her alertness.The stress at this point on the family was enormous. It was the weekend . To make matters worse she had been transferred to a second Ortho Consultant and on this second day the Ortho Reg from the previous Consultant came into the room and asked " what is this lady doing on the LCP ? " who then informed his Consultant at home and gave me the opportunity to speak to him. He came in personally the next day to review and assured us as a family that the LCP was appropriate in spite of his initial surprise of the deterioration. Soon after the usual hydrate or not debate began. The palliative care nurse tried to reassure us but her interpersonal skills were somewhat lacking. We still were v worried and through a lot of pestering a review again by Palliative Care Reg- the LCP was appropriate. It took 11 days for my Mother to die and every day as a family we struggled to accept that the correct decision was made.I am a retired Registered Nurse and have pieced together from reading the notes just how uncoordinated my Mothers care was.Having met with the Trust since a formal complaint they admitted all their shortfalls in care.

  7. The phenomenon of patients improving (albeit temporarily) seems to be a common one, and has even been the subject of a paper by Eleni Tsiomanou (aka Health-Being, above – paper in press). Whatever the pathophysiological explanation, it presents a difficult ethical challenge. Why? Surely it’s simple – the patient imprives, you were wrong to diagnose impending death, you getr them off the LCP. That would be the natural response.But…leading up to the LCP the doctors will have explained the likely diagnosis of dying to the family, and will have made it clear that thier opinion survival was now nigh impossible. The family will have agreed that LCP is appropriate (I am excluding cases of poor communication – a different subject), and will be expecting death. Now you contact the relatives and explain that in fact there is an improvement, we are treating actively again. It’s good news. The problem here is that the patient may still be dying, but in a different time span. Perhaps over a week to ten days rather than the 24-48 hrs that were initially estimated. Many of us who have seen patients improve will have seen patients deteriorate again, even when treated actively with IV fluids etc. There is a danger in this situation that the patient’s care become inconsistent and the family no longer know what to think. Robina Williams’ comments touches on this. These issues are of course trivial if recovery occurs, or there is at least significant extension to life. This positive prospect must be balanced against the risk of changing management when the patient is actually still dying. A hard call. Axiomatic, always, is the principle of saving life. That should not need saying, but Rita Pal’s freedom with the word ‘euthanasia’ requires some comment. She suggests that using the LCP before ‘organ failure’ has set in is euthanasia, but I would counter by saying that death, in this patient group, is not always preceded by identifiable organ failure. That is why markers of organ failure (eg. cardiac, renal, lung or liver dysfunction) do not feauture in accepted criteria used to predict death. On ICU yes, not on the ward in advanced dementia. Anyway, I object to her use of the term, as it implies illegality.James Mee’s comment shows how much trust the medical profession has lost with some people. Whether I and my fellow medics agree with him or not, it doesn’t really matter now – trust has been eroded, and we need to be open-minded as to how we build it up again.

  8. Re nutrition and hydration of the elderly . In our case none of the nursing staff appeared to know how to how to fill out a fluid balance chart correctly. Eg no daily totals , urine output not always charted and no note of the volume of IV fluid absorbed and remainder carried over to the next days chart. Basic care – vital for the elderly. When medical staff realised just how dehydrated she had become they carried out a fluid challenge. I am very out of date with current practice and don’t know if a fluid challenge is appropriate in the elderly or not ??I can see the LCP is extreme TLC for many patients .But for others like myself the grey areas are many .

  9. @ Rita – in our case the Nursing Staff failed to realise the importance of fluid balance charts. Not totalled daily , amount of IV fluid absorbed per day not recorded . Out put not recorded. Essential for elderly care especially awaiting surgery.When the medical staff finally realised her level of dehydration – as an inpatient and her condition had deteriorated so much. They tried a fluid challenge – I don’t know if that was appropriate for an 89 yr old.My reason for writing this is that patients who do not have a terminal illness end up on the LCP because their care has been severely lacking.You mentioned quality of life . Yes her mobility was reduced and she needed carers once per day. But she was computer literate – Facebook , Skype and chat. Days out aplenty etc etc But she was not given a fair chance and that makes the decision to agree to the LCP so much harder – taken when you are sleep deprived , emotional etc. Such an emotional topic as I can remember in the early seventies having to give such a primitive level of care to patients at the end of their lives

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