Expert reaction to latest developments in detection of PVS
Read Professor Savulescu's full comment on a paper on bedside detection of awareness in the vegetative state, recently published in The Lancet.
Paper: "Bedside detection of awareness in the vegetative state: a cohort study" by Damian Cruse, Srivas Chennu, Camille Chatelle, Tristan A Bekinschtein, Davinia Fernaěndez-Espejo, John D Pickard, Steven Laureys, Adrian M Owen. Published in The Lancet, early online 10 November,
Comment: "This important scientific study raises more ethical questions than it answers. People who are deeply unconscious don’t suffer. But are these patients suffering? How bad is their life? Do they want to continue in that state? If they could express a desire, should it be respected?
The important ethical question is not: are they conscious? It is: in what way are they conscious? Ethically, we need answers to that. Life prolonging treatment has been and legally can be withdrawn from patients who are permanently unconsciousness. We need guidelines for when life-prolonging treatment should be withdrawn in these minimally conscious states. Paradoxically, it could be worse for some than being permanently unconscious. And in countries like the Netherlands, we need guidelines on whether and when active euthanasia should be performed. For some of these patients, consciousness could be the experience of a living hell.
Previous research by some of these authors shows importantly that some patients who are “locked-in” – who are clearly conscious and can communicated but cannot move at all – find their lives worth living. Even this finding would not settle what should be done. What makes each person’s own living hell is a matter for that person. It is subjective. And we can adapt to terrible disability. That is important for all of us to know. But it does not change the rights of individuals to make what they will of their lives, including choosing the conditions under which and the time to end them. One possible solution to these issues is to form a living will about what should happen to you, if you were to be in such a state (see: http://blog.practicalethics.ox.ac.uk/2011/02/ethical-lessons-from-locked-in-syndrome-what-is-a-living-hell/)
Such cases also raise ethical issues of futility and the appropriate allocation of limited resources on patients with severely impaired quality of life. That is, they raise questions of distributive justice. Even if such patients are minimally conscious, is it fair and just to use public resources to keep them alive for many years? Very poor quality of life has been used as ground for withholding or withdrawing medical treatment.
Science is invaluable in discovering what the world, including ourselves, is like. But it can never alone tell us what we should do. The big question – how such patients should be treated – remains as open as ever. We need more science to find out what the life of such patients is like. But we also need ethics to decide what we do when we discover that."
Mail p28 – Julian Savulescu, Paul Matthews
Independent, p26 – Julian Savulescu, Paul Matthews
Telegraph p19 – Susan Gathercole, Paul Matthews, Julian Savulsecu