Thursday, 1 November 2012
The Liverpool Care Pathway and End of Life Issues
I have hesitated to comment on the Liverpool Care Pathway (LCP) since I am not medically qualified and because, as readers will know from a previous post, end of life issues are a rather emotive topic for our family at present. On the other hand, it is because of family circumstances that I take an interest in the LCP, so here goes...
Five concerns with the LCP have been identified by senior doctors. These are concerns I share but, since I am not a Doctor, I comment upon them with some hesitancy. Before doing so, I feel obliged to point out that there seem to be some common-sense benefits to use of the LCP: its aim of involving the family in end of life discussions; the withdrawal of oral medication (or medication that no longer benefits the patient), the cessation of vital signs recording (temperature, pulse, blood pressure) and making positional changes only to keep the patient comfortable rather than in a regimented fashion, can all contribute to the patients comfort and eliminate unnecessary distress. These however, are practices that were followed by all good Nurses and Doctors well before the LCP was (unnecessarily?) produced, and do not lessen the problems it seems to contain.
1. People have been put on the LCP without the knowledge or consent of their families.
Families ought to be consulted about the care being given to loved ones who are in the final stages of life, since families are involved from day one in caring for one another, and this ought not to be removed from the family as the end of life approaches. My own concern has always been that families are unaware of the effects of care given by Doctors and Nurses, and take their advice on board without questioning it simply because ‘Doctor knows best’. How many families are aware that sedation and increased analgesia can render the receiving of oral fluids difficult, and that if fluids are not then given by intravenous or subcutaneous routes, dehydration may result? How many will know that some analgesics depress breathing, which can cause pneumonia to set in? Thus, even when families are consulted they may still, unknowingly, agree to a comfortable hastening of death. Another possible problem is that some may knowingly consent to a pathway that hastens death because “we wouldn’t let a dog suffer that way”.
2. It is cruel to deny fluids to sentient beings.
Not only is this cruel, but if continued for some time it brings about dehydration, which causes death. I realise that the LCP is meant for use in the final hours where clinical dehydration is not likely, but I have seen terminally ill people, once they have been given ‘extra painkillers and anxiety relief’, quickly fall into a state of reduced responsiveness and then, for some days before they die, receive no fluids, only mouth care.
3. Doctors cannot accurately predict that someone will die within hours or days.
No one can say how long a patient will live or when someone will die. Indeed, an accurate prediction (“I think by the day after tomorrow”) would leave me wondering if the prediction was based on how much sedation and analgesia my loved one was being given, or how dehydrated they were.
4. When doctors withdraw all treatment and nourishment, believing their patients have only days left, the prediction becomes self-fulfilling. This is particularly worrying. Withdrawal of fluids and nutrition simply cannot be justified (fluids and nutrition are a basic human right and not ‘treatment’; we do not ‘treat’ our children when we sit them down for dinner). The withdrawal of fluids and nutrition is particularly disturbing if analgesia and sedatives are increased at the same time, since sedation may well have the effect of preventing a patient from expressing any distress caused by thirst or hunger. I see no circumstances when fluids become an unnecessary burden on the patient. Thirst, on the other hand, is an unnecessary burden.
5. When well over 100,000 are dying on the LCP each year, the suspicion inevitably arises that the pathway is being used to hasten death and free up beds.
I have to say that having spent many hours in care situations and had discussions with Doctors, I doubt very much that the LCP is being consciously used to free up beds.
I close by saying that, since I am not medically trained, my concerns may not be completely justified, but as one whose mother is likely to reach end of life care in the near future I have a right to express concerns which arise from what I have observed over several years and which are not, I think, without some justification.