Comment on “Bedside detection of awareness in the vegetative state: a cohort study” by Damian Cruse, Srivas Chennu, Camille Chatelle, Tristan A Bekinschtein, Davinia Fernández-Espejo, John D Pickard, Steven Laureys, Adrian M Owen
Published in The Lancet, online Nov 10.
Cruse and colleagues founds evidence of some kind of consciousness in 3 out of 16 patients diagnosed as being permanently unconscious. They used an EEG machine, capable of being deployed at the bedside. Is this good news?
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 Life prolonging treatment has been and legally can be withdrawn from patients who are permanently unconsciousness. We need guidelines for when life-prolonging treatment should be withdrawn in these minimally conscious states.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.
Further Reading
Savulescu, J. and Kahane, G. (2009). ‘Brain-Damaged Patients and the Moral Significance of Consciousness’. Journal of Medicine and Philosophy. 33: 1-21. doi:10.1093/jmp/jhn038
Skene, L., Wilkinson, D., Kahane, G., and Savulescu, J. (2009). ‘Neuroimaging and the Withdrawal of Life-Sustaining Treatment from Patients in Vegetative State’. Medical Law Review. 17: 245-261. doi: 10.1093/medlaw/fwp 002 ISSN: 1464-3790
Wilkinson, D., Kahane, G., Horne, M., and Savulescu, J., (2009). ‘Functional Neuroimaging and Withdrawal of Life-sustaining Treatment from Vegetative Patients’. Journal of Medical Ethics. 35: 508-511.
Wilkinson, D., Kahane, G., and Savulescu, J., (2008). ‘Neglected Personhood’ and Neglected Questions: Remarks on the Moral Significance of Consciousness’, American Journal of Bioethics. 8:9 31- 33.
For more on distributive justice and limitation of life-prolonging medical treatment, see: Wilkinson, D. and Savulescu, J. (2011) ‘Knowing when to stop: futility in the ICU’. Current Opinion in Anaesthiology April 2011 Vol: 24 (2) pp 160-165
Savulescu, J. (2001). ‘Resources, Down Syndrome and Cardiac Surgery’. British Medical Journal.322:875-6.
Julian Savulescu
Director
Oxford Centre for Neuroethics
Editor
Journal of Medical Ethics
Contact: 01865286888
(Cross-posted at Practical Ethics)