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.
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?
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]