Wednesday 17 July 2013

What questions should we be asking about end-of-life care?

What questions should we be asking about end-of-life care? The Liverpool care pathway was one element in a system that needs refocusing on how, rather than just where, people die
With the current focus on the Liverpool care pathway (LCP), there is a lot of talk about how people's end-of-life wishes are taken into account.
This is a very specific example of where a tool designed to improve co-ordination between professionals has sometimes been poorly implemented to the detriment of patients and their families.
But focusing on the LCP alone means we fail to see the wood for the trees.
The LCP is one element of a vast end-of-life care system, which has, since 2008, been geared up to help people achieve their preferred place of death. This has led to an underdeveloped system.
The fact is, ensuring people can die at home is currently being used – both by health and care professionals and by dying people themselves – as a quick and easy proxy for a good death.
In a way, this is understandable. Decisions about end-of-life care are often made under difficult circumstances and it can be hard for professionals to discuss the intricacies of medication and families' wishes. Under these circumstances, it is tempting to simplify the decision-making process, by making this into a choice about place.
But it is clear this has undermined the development of the end-of-life care system: it has led to a lack of proper scrutiny of the experience of dying at home and leaves other settings neglected when it comes to developing them as good places for people to die.
The result is a system where no single place is able to meet all of people's preferences.
Inevitable compromises ensue – which is most evident for people expressing a wish to die in their own home.
Successive surveys have found that around two thirds of people say that home would be the place they would want to die – but research recently carried out by Demos for the charity Sue Ryder reveals that although 78% of people surveyed said that dying without pain was important to them, only 27% felt that home was a place where they would be free from pain during their final days.
This suggests the public is switched on to the fact that pain relief and out-of-hours care in one's own home is an acknowledged weakness in the system.
Despite knowing this, people are still opting to die at home because it satisfies more of their preferences overall – such as being surrounded by loved ones, in familiar surroundings and having privacy and dignity.
Such a trade off – sacrificing pain relief to be with your family – is not acceptable in today's care system, and yet it goes unscrutinised due to a prevailing assumption that once someone dies at home, all their wishes have been taken into account.
In order to align the end-of-life care system with the rest of health and social care, we must shift the emphasis from where to how and think about what outcomes people value, regardless of where they end up.
This places a lot more responsibility on health and care staff to communicate honestly and sensitively with patients and their families about the kind of death they would like to achieve, and inform them of their options across all available locations.
This is not an easy conversation to have, and doctors, nurses and other health and care staff should be supported to ask the right kinds of questions – not where, but how.
This will require rethinking and adapting existing tools, such as advance care plans, to ensure that place is not viewed as the most important – or the only – choice that a person needs to make about their death.
We should be aiming for a system where a person can say "I want to die without pain" and know what their options are for achieving this – whether at home, in hospital or in hospice.
Perhaps Baroness Neuberger's more constructive recommendations will finally create such a system.
Jo Salter is a researcher at the thinktank Demos  Guardian Professional

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