Re:Ethics of Assisted Dying in LIS

Marco Sara', Chief of Postcoma And Intensive Rehabilitation Care Unit,

Other Contributors:

March 10, 2011

The fact that a high percentage of patients with locked-in syndrome (LIS) shows an unexpected well-being does not surprise us, but we are very interested in this. The first part of the work carried out by Bruno and colleagues provides a basis for researchers to formulate new working hypotheses in patients who have a lesion that is so localised and yet leads to such a complex mosaic of consequences on a functional level. In the conclusions authors raise some additional ethical questions about this challenging group of patients. We have identified a series of 'syndromes within the syndrome' in patients with LIS due to ventral pontine damage (pathological laughter and crying, motor imagery impairment and a selective impairment in the recognition of facial expressions).1-3 At the same time we found, albeit in a much smaller group of subjects, values almost comparable to those of the general population in self-reported Quality of Life.4 This is neurology; this is science and science must stop here. Prof. Savulescu attacks the work of Bruno et al., saying that this is the classic research approach of those opposing euthanasia. In other words the 'ethical' conclusions would invalidate empirical data on the grounds that these tendentially favour a certain ethical or political vision of the world (and therefore are prejudiced). In our opinion, an alternative approach, based not on scientific findings but rather on moral and/or political motivations, would be prejudiced too. We find ourselves asking "Who is invading whom?" Is politics invading science, or is science invading politics? This would be a rhetorical question had we not arrived at this point of convergence. Either Prof. Savulescu denies that the data presented by Bruno et al. have scientific value on the basis that they go against common sense (and asks Bruno and colleagues to 'abjure') or he claims that the data are false. Yet in our opinion there is a third way to proceed: separating science from politics and ethics. A disconnection that must be clean and definitive.

1. Pistoia F, Conson M, Trojano L, Grossi D, Ponari M, Colonnese C, Pistoia ML, Carducci F, Sara' M. Impaired conscious recognition of negative facial expressions in patients with locked-in syndrome. J Neurosci 2010;30:7838-7844.

2. Conson M, Sacco S, Sara' M, Pistoia F, Grossi D, Trojano L. Selective motor imagery defect in patients with locked-in syndrome. Neuropsychologia 2008;46:2622-2628.

3. Sacco S, Sara' M, Pistoia F, Conson M, Albertini G, Carolei A. Management of pathologic laughter and crying in patients with locked-in syndrome: a report of 4 cases. Arch Phys Med Rehabil 2008;89:775-778.

4. Pistoia F, Conson M, Sara' M. Opsoclonus-myoclonus syndrome in patients with locked-in syndrome: a therapeutic porthole with gabapentin. Mayo Clin Proc 2010;85:527-531.

Conflict of Interest:

None declared

Conflict of Interest

None declared