Professor Desmond O'Neill:

I might come in there in a different sort of way. It is almost magical thinking to believe there is a regulatory approach that will control this. One of the very first really troubling things from which the whole culture of research ethics committees arose was the Tuskegee experiment, in which half of a cohort of African-Americans with syphilis were not treated to see what would happen. The author of the report that led to the setting up of research ethics committees and regulation said that regulation will never be enough and that if we do not have a system that promotes virtuous thought and action, it will come to naught. In other aspects of care, including nursing home care, humans are humans, and regulation is never enough. We have to have a system that promotes virtuous thought and action, or, as Atul Gawande would say, we have to do the right thing.

Regarding what the Deputy referred to, with certain illnesses there is a danger of adding to diagnoses by apocalyptic talk about what the conditions actually mean. I direct committee members to Simon Fitzmaurice's book It's Not Dark Yet. The really chilling bit was also in The Irish Times. It refers to a doctor asking Mr. Fitzmaurice whether he was happy to die. He had got pneumonia and the doctor did not want to ventilate him because of a recurring feeling that life with motor neurone disease was not worth living. My experience after nearly 40 years of work, which I believe is that of many in palliative care and others, is that when people present with what appears to be difficult suffering, a second opinion very often offers light and insight regarding the opportunities that exist. Bearing in mind the case on the television I referred to, what we want to do is provide care, support and hope to people with the conditions in question. In this regard, Simon Fitzmaurice was really instrumental in creating an environment in which he could say he wanted to live, go on and produce a film.

Consent is exceedingly important. A say is important so people will not get life-prolonging treatment they do not want and so they will get palliative care to the greatest extent possible, but the real challenge of labelling any condition as entailing a life not worth living is what it creates in respect of this framework.