Month: January 2013

“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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Meta-patient: balancing the value of people and their data

meta – definition

A prefix meaning one level of description higher. If X is some concept then meta-X is data about X.

 

– Is your doctor interested in you, or in something about you? –

 

As a 3rd year medical student in Bristol I overheard a conversation between the senior registrar and his consultant. The senior registrar had just been appointed to a consultant post in the same hospital, and he was overjoyed. His soon-to-be colleague said to him

            ‘It’s great, but you need to find something else to do.’

I kept listening.

            ‘Seeing patients just isn’t enough to keep you going for twenty-five years.’

What on earth was he on about?

 

His point was that seeing patients day in – day out does not provide sufficient intellectual reward. Although treating thousands of individuals over a career would seem more than enough (and a privilege at that), many doctors feel the need to step back and understand where they, and their patients, belong in the scheme of things. In addition, they feel the need to ‘make a difference’ on a larger scale. To achieve this it is necessary not only to manage patients as they arrive in the surgery or the ward, but to gather data, recognise patterns and communicate those findings to the wider world.

To a greater or lesser extent therefore, doctors come to see each patient not only as a person with specific needs and expectations, but as a part of a cohort, bringing with them information that may not directly inform their care, but which may be useful to the population in the longer term. It is these measurements (blood results, physiological variables), when added to the whole, that go to make up the ‘meta-patient’*. So what’s the problem? Does the fact that a ‘body of data’ sits alongside the ailing individual detract from the purity of the doctor-patient relationship?

At first glance there should be no connection between the ability to provide compassionate care and the need for ongoing intellectual stimulation. However, I believe that there is a balance to be struck between our primary role, as carers, and our academic or intellectual pursuits. Different doctors respond to different forms of mental stimulation, and I think it is important that each one reflects on what it is that really makes them tick. There is a risk, in my view, that if the data a patient provides becomes more important to the doctor than their problem and its treatment, they may begin to value the meta-patient more than the real patient.

 On a day-to-day basis, for the majority of doctors, it is undoubtedly the process of meeting patients, making diagnoses and observing how they and the disease respond to treatment which provides most satisfaction. Empathy, trust and gratitude enrich this experience. But we must be honest about the benefits of data collection in order to comprehend the full spectrum of medical motivation.

 Data collection allows us to develop databases, be they local, national or global. Sitting back in the office, looking at the numbers in a spreadsheet, the doctor reflects on his or her cumulative experience. The accumulation of small interactions begins to take shape, like a pointillist painting. By developing hypotheses and processing the data we are able to publish abstracts or papers. If we are lucky and so inclined, we may take the results to national or international meetings. Egos are augmented, and the most assiduous or gifted will develop great reputations. Knowledge grows, breakthroughs in our understanding occur, healthcare improves, humanity benefits. I am not cynical about this…just fascinated by the fact these developments remain largely invisible to the patients who contributed to them.  

&nbs
p;
Through anonymisation, data becomes separated from the person. The meta-patient takes on a life of its own, melds with the cloud of information that has been collected elsewhere, and is subjected to statistical analysis. Now, from the point of view of the study in question, it does not matter if the patient improves, deteriorates or dies. It is the data that matters. For the doctor who saw the patient it is necessary to remain focussed on the individual’s wellbeing. For the good of the study it is important that whatever happens, the outcome is known and reported.

 The question then comes – when you meet a patient for the first time, one whose disease falls within your area of research expertise, do you think first about the needs of the individual, or the value of their data?

 My own experience of this is limited to a two year research project that I undertook into liver disease. I roamed the wards looking for patients who fulfilled the criteria for my study, and was excited when I found one. Each successful recruitment took me closer to my target of 100 patients. Having obtained their consent I diligently recorded the relevant data, took the special blood test and ran off to examine the white cells. From that point on, my interest in the fate of the patient was, in the truest sense of the word, ‘academic’. The crucial point to make here though, is that I was not on the medical team looking after these patients. As a research fellow I functioned separately, so there was no overlap between my usual role, that of providing medical care, and my research role. I often wonder (not being a particularly ‘academic’ physician) how doctors who are perpetually involved in clinical trials manage this dichotomy.

 Observational studies, like the one I conducted, do not involve treatment decisions, so the psychological (if not ethical) dilemma is less challenging. Studies that focus on treatment are far more important and delicate. However, these are highly regulated, and in my experience the clinicians involved have no problem separating their duties as a physician from their academic interest. In fact, I believe that involvement in therapeutic trials often brings with it the benefit of close observation and even more careful management.

 Is it worth highlighting the dual roles of doctors, and the invisible simulacrum that accompanies their patients? I think so. Doctors, especially those in training, need to recognise where they derive their energy from (one-to-one interactions, patterns, both?); and patients should be aware that when they come to hospital, their meta-self may elicit as much interest as their true self.

 

* This term came to me over my cornflakes recently, and it sounded so cool I had to use it. I have not seen in used elsewhere.