The controversy over the that has raged for the past 10 days or so, following horrid and misleading headlines from some newspapers, has this week collided with the Government’s publication of its response to the Future Forum’s recommendations about the NHS Constitution. What can we make of this?
Let’s start with the Liverpool Care Pathway debate. I can’t put it any better than Libby Purves in Monday’s edition of The Times newspaper: 'The Liverpool Care Pathway is basically an honest attempt to confront and alleviate an ordeal about which none of us really wants to think'.
I would go further: it is a prime example of evidence-based and compassionate healthcare delivery. Dying in hospital in the past was often impersonal and chaotic, at worst a barbaric experience. Use of the Pathway means the standards of palliative of care achieved by the best hospices can be brought into the hospital.
That said, there is clearly a set of concerns that need to be addressed. Concerns that health professionals need to hear beneath the clamour of dreadful media headlines.
Firstly, in a world where citizens are ever more suspicious of those in authority, linking hospital payment systems to the process of death will inevitably raise anxieties. These anxieties will be exploited by those in the media and in politics always seeking to denigrate the NHS. However well motivated those seeking to incentivise best practice through payment mechanisms are, unless these are exquisitely communicated over and over again as being about quality not cost, cynicism will return to haunt us. 'Be very careful', would be what I would say to the economic rationalist unaware of the potential unintended human consequences.
Secondly, there is the issue of engaging both patients and carers in decisions about their care and treatment. If there is evidence that in certain places and at certain times the views of patients and their carers have been ridden over roughshod, then we need to ask ourselves why. This is not consistent with proper implementation of the Liverpool Care Pathway.
The Foundation has been vocal in its support for shared decision making in all aspects of care and treatment, including end of life care. In this respect, we successfully argued for amendments to be made to the Health and Social Care Act 2012 to ensure patient involvement duties were placed on commissioners.
We also joined forces with others in successfully arguing for amendments to be made to the revised NHS Constitution. 'You have the right to be involved fully in all discussions and decisions about your health and care and to be given information to enable you to do this', the redraft reads. In the light of the Liverpool Care Pathway debate, the Department of Health has now added: 'including your end of life care'.
While all this is very encouraging, let me end on a note of caution. There can be real differences between the wishes of patients themselves and those of their their families, however caring the latter might be. There are times when it is the patient’s wishes for their families not to be involved in the decision making. On these occasions the patient’s wishes must be complied with however difficult that might be for friends, carers and families. At times like this the judgement calls made by experienced nurses come into play.
Sometimes there is never an obviously right answer. Sometimes difficult choices have to be made. I wonder, have those responsible for the misleading headlines ever thought about just how tough that can be?
Stephen is Chief Executive of the OnlyWan.
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