The Liverpool Care Pathway (LCP) debate has brought the public’s attention to the possibility that patients are being deprived of life, their death hastened, when medical teams decide that their time has come. The elements of the pathway that were intended to reduce the burden of treatment, such as not inserting new intravenous lines or passing feeding tubes, have been portrayed as withdrawals of care.
The end result, at one level, has been helpful. Doctors and nurses are now more careful and explicit in describing what the pathway entails and what its effects might be. It is undeniable that in some cases, the LCP was started without families being aware of it. Most in the medical profession feel stongly that the LCP does not itself bring about death, but it has become necessary to consider this possibilty when discussing it with relatives. But I now wonder whether this need for clarity has altered the tone of end of life care discussions adversely.
To put it simply, there is a danger that we end up discussing the philosophy and application of LCP itself more than the needs of the individual patient.
This may be because we are nervous. I can only speak for myself of course, but I have found myself introducing the term ‘Liverpool Care Pathway’ with a degree of hesitancy, because I know it may have baggage attached. I do not know how the relatives that face me will interpret those words, because I do not know how they have reacted to the media coverage. Will they assume that I am trying to enforce some form of euthanasia? Will they read into my words some malign motivation, the need to clear a bed, to unburden the Trust of their ailing loved one? Or will they have listened to the debates and read the articles without developing scepticism towards doctors? It is necessary to gauge the family’s reaction before moving on to the next part of the discussion. And this carries with it the danger of the derailing the whole interaction. There is a danger that focus on the patients needs and previously expressed goals is lost, while the conversation segues into a cursory review of recent news stories and media reports.
You have no idea what the reaction will be until you mention it, but because the LCP is now ‘controversial’, you have to make emotional room and physical time to manage it. The tone is altered. If there is scepticism or fear (and who could blame a Daily Mail or Telegraph reader for having doubts after the numerous reports?) it remains for the doctors or nurses to overcome this, to gently persuade and reassure. Their skills and knowledge are diverted into justifyng a mode of care that they continue to have faith in, rather than concentrating on the individual aspects of the patient’s treatment.
One option would be to carry on regardless, to have the same discussion that one would have had before the controversy took fire. But that approach risks ignoring any concerns that the family might have but are too shocked or nervous to voice. There is a danger that a day or two later the import of the Pathway’s initiation will sink in and the situation could be challenged. The bottom line is that permission is needed to start the pathway. Indeed, Jeremy Hunt (Secretary of State for Health) has suggested that it may become a legal requirement. This contrasts with resuscitation, which remains a ‘medical’ decision*.
So, what to most doctors and nurses was merely a way of organising and formalising established methods of terminal care has now become a ‘treatment’ in itself, one that demands a separate exploration of risks and benefits. I would question whether this is the right kind of conversation to be having with the family of the patient who is clearly dying. Is it really appropriate to introduce new ideas and new decisions at this moment? The medical journey has almost reached an end. The burdens and benefits of various therapies (chemotherapy, antibiotics, surgery, ventilators…) will have been discussed at length, but they will not have proved successful, and that is why the patient is now dying. As the patient moves into their final few days, the relatives are presented with yet another decision…one which, most believe, is not a true decision at all.
Critics of the LCP argue that doctors are not good at predicting death. This forms the foundation of Professor Pullicino’s case against the Pathway. To a family member who has taken an interest in the controversy one of the first questions they might ask is, ‘How can you be sure they are dying? I’ve read that it’s a completely inexact science…’ To the doctor or nurse who is trying to talk through end of life care options, this is hugely undermining. How can they introduce the concept of the LCP, designed to alleviate discomfort at the end of life, while simultaneously fielding doubts that are raised about the diagnosis of dying? The honest answer would be, ‘We can never be a hundred percent certain sure…’, while the unvoiced thought runs through their mind – ‘I’ve seen hundreds of patients die, and I can tell you with a great deal of certainty, your mother is dying…’
Medical professionals can deal with all of this. Part of our role is to explain what is happening to families. We don’t mind…but I do find it regretful that the very term LCP has become a potential stumbling block in a journey that should be smooth. Doctors, nurses and families should not have to be skirting around the issue of ‘that death pathway they’re always talking about…’ when the minds of all involved should be focused on the needs of one person – the patient.
Note: this article is written with an emphasis on non-capacitous patients, rather than those who are able to engage in a full discussion before the terminal phase of their illness.
*best practice always involves explaining the resuscitation decision, and ideally obtaining agreement from the family. This occurs in the vast majority of circumstances.