Yesterday’s news reports the launch of the Government’s End of Life Care Strategy for England. This strategy will dedicate in excess of £250 million allowing patients who are dying to decide, as the Times puts it, “where and how to die.” This is part of a programme to provide better care for the dying. According to the BBC, only one in five deaths takes place at home despite a comfortable majority expressing a preference for such familiar surroundings. This prioritisation raises some interesting ethical issues particularly in the light of cost-effectiveness considerations.
The striking thing about end of life care is that it is not cost-effective. People who are dying can only benefit a certain amount from the provision of care. Those who are likely to live longer will continue to benefit from a particular intervention for as long as they continue to live. So typically when we compare cost-effectiveness through measures like the Quality Adjusted Life Year (QALY) typically things like palliative care fare badly.
Importantly, when the government promises resources in the way that it has with the End of Life Care Strategy it is (not for the first time) making an important statement about the limits of a cost-effectiveness approach (or at least a purely cost-effectiveness approach) in the allocation of health resources. The ethical question is how to justify this commitment – specifically, how do we justify exempting care for the dying from the more usual cost-effectiveness considerations.
Hughes (2005) very plausibly suggests that we need an account of the value of a life that is not atomistic – that does not take each part of a person’s life as having the same value. Instead, we require an account of the value of a life that is shaped by the life as a whole or by the narrative of the life in question. It is only in this way that may be able to explain adequately the extra significance that we attach to manner of a person’s death. It is important, we might think, that a person’s death is consistent with or a fitting end to their life.
Whilst this shape of an answer looks promising, Hughes notices an interesting and controversial consequence. If the focus of our attention on dying revolves around the way in which it fits with an overall life and its narrative, this would seem to allow the possibility of voluntary euthanasia. Some lives – the lives of active, mobile individuals with lots of energy – might not end fittingly with long periods of bedridden pain management. Allowing people the choice of where and how to die seems consistent with the choice of when to die.
Reference:
Hughes, J. (2005) ‘Palliative Care and the QALY Problem’, Health Care Analysis 13 (4), pp. 289-302.