I would like to thank Baroness Knight for arranging this meeting and for the opportunity to say a few words about the Liverpool Care Pathway which is said to be used in 80,000 deaths a year.
Conscious of entering the autumn of my life, the manner of leaving it comes more readily to mind, not least because of the recent controversy.
Since the pioneering work of Dame Cecily Saunders there is no need to fear unrelieved pain, but what I do fear is thirst. In a letter to the Chief Executive of NICE ( National Institute of Clinical Excellence ) I asked;
“How long should a person be without fluids”?
No answer was forthcoming from him nor subsequently from the Association of Palliative Care Medicine.
Maybe, I am one of the few people here who has seen death from thirst. It was in a newborn baby and is not something that is easily forgotten. I am reminded what Dame Cecily Saunders said ;
“How people die remains in the memory of those who live on”.
In fact no one can survive without hydration and nourishment. They are basic human needs. The human body has a built in control system to ensure that fluid intake continues. Thirst is a primitive sensation which eventually comes to dominate all others and the thirst centre lies in the hypothalamus one of the deepest levels of the brain. There can be no certainty that drugs working on the higher centres will abolish thirst.
Baroness Knight took part in a recent Newsnight discussion in which the President of the Association for Palliative Care Medicine stated that the dying do not experience thirst or that it can be relieved by moistening the mouth.
In fact Dr Peter McCullough a senior researcher at the John Curtain School of Medicine of the Australian National University in a review of the literature in 1996 quotes Fitzsimons and Barnard ;
“…moistening the mouth failed to relieve thirst in dogs and horses with oesophageal fistula …and it is evident that, whereas dryness of the mouth can aggravate a sensation of thirst resulting from body water depletion, its alleviation will not remedy thirst in the absence of correction of water depletion.”
As a recently as 2009 the distinguished professor Sam Ahmedzai with long experience in Hospices writing in The Times said;
“Hospices have always maintained that dying people do not feel thirst and to die in a state of dehydration is “natural”, and even desirable. I am struck by the stability of this view over several decades but in healthcare, such a focus would be seen as narrow minded inflexibility. Several studies have shown that dehydration can cause intense suffering and people recovering from severe life threatening illness in intensive care units recall thirst as one of the most distressing sensations. Dying people often cannot tell us how they feel, yet they will probably experience the same feelings we all do when we are dehydrated.
The “evidence” against medically assisted hydration is largely based on the experience of intravenous fluids, which admittedly can cause problems of fluid overload and the tubing can get in the way. For years however we have had the alternative method of subcutaneous hydration by which adequate fluids to counter thirst and distress can be administered by unobtrusive needles into the abdomen or thigh with hardly any risk of overload”.
Following all the recent publicity on the Liverpool Care Pathway and the Westminster Hall Debate just after Parliament reassembled, a number of horrifying accounts have come to light of people dying of dehydration after 13 days without any fluids. Sometimes even after the families have begged doctors to reconsider and in one case actually seeking legal advise, but to no avail.
In fact, the Liverpool Care Pathway does not prohibit subcutaneous fluids being administer but as the 2010 - 2011 audit makes clear it almost never happens and that over 80% of people put on the pathway have artificially administered fluids stopped. This has to be a severe criticism of the pathway itself as well as its application in practice.
The Department of Health continues to endorse the Liverpool Care Pathway and Lord Howe has just made it plain that the Pathway itself is not being questioned. It is still insisted that it is “good medicine”, and that is also the stated position of the three bodies currently carrying out the inquiry established by Norman Lamb the Minister for Care. How objective can they be about an inquiry into their own policies, one may ask?
It is to be hoped that not only will relatives be able to give their evidence directly to Baroness Julia Neuberger, the independent chairman of the inquiry but that medical and scientific evidence critical of the Liverpool Care Pathway itself as well as its practice, can be given directly to her.
Thank you for your kind attention.