Peter died in agony because he wasn’t even a second-class citizen

WHEN Peter McKenna died, he was alone, in terrible pain, and frightened. He didn’t know what was happening to him because he couldn’t.

He'd had a recent stroke. He was blind. And he couldn't communicate. The bottom half of his body was blackened as a result of blood poisoning. When he had arrived in Beaumont Hospital earlier that evening they discovered that he was completely dehydrated. Those supposed to be caring for him hadn't even had the wit to see that he was in terrible thirst.

Peter was almost certainly going to die reasonably soon anyway. All his life he had had Down's syndrome, and at the age of 60 he had been in the grip of Alzheimer's disease for a couple of years. The end of his life a life that had been happy for all that was near enough. But it could have been an end accomplished with dignity. In peace and comfort. It had none of those things.

Peter's family have lived with the circumstances of his death ever since. I have talked to them again and again. In every conversation, there is one unspoken thought. Was it their fault? Could they have done more for Peter? What measure of guilt do they have to carry as a result of Peter's pain and distress?

The thought is theirs. It has never been mine. Nobody could have done more for Peter than his family did. They fought to protect him, to achieve the highest standard of care for him. If they had been listened to, and treated with the respect they deserved, Peter would have died in peace.

Although, as I said, the thought of their guilt was unspoken in all our conversations, they finally expressed it on Prime Time last week. You might have seen the programme (at least I hope you did), the devastating expose of conditions in Leas Cross nursing home. Dan and Mary, Peter's brother and sister, featured on the programme. And they both said the same thing. What must Peter have thought of us in his pain? Why did they abandon me? They never abandoned him. Which is not to say he wasn't abandoned. I think of Peter often, and when I do I think of him as a citizen of Ireland. A brave and happy man, a man of character, a man with profound disabilities. What is it about disability, especially intellectual disability, that makes it easy to rob a person of his citizenship? Because that is what happened to Peter. He was deemed inadequate to be a citizen, and that's why he died in pain.

Peter was sent to Leas Cross by the people entrusted with his care, and he was sent despite the strong objections of his family. Because he was a ward of court, a court ordered him to be sent there, on the advice of professionals. A dying citizen of Ireland, with a high level of dependency, was sent to a place that was utterly incompetent to deal with those dependencies.

The day before he went to Leas Cross, Peter was taken by ambulance to Beaumont Hospital because he had a urinary infection. There, a catheter was inserted into his penis, an event that would be traumatic for any man, but must have been many times more so for Peter. Once it was inserted, he was taken to the care of complete strangers, away from the routine that was vital to him. When he died, a fortnight later, the catheter was still there, untended, untreated, uncleaned. Almost certainly, it was the failure to deal properly with the catheter that caused the blood poisoning that brought him to die in pain.

In that fortnight, Peter was visited only by his family, and by one or two of the staff who had cared for him prior to his departure to Leas Cross (they were, it is important to say, off-duty). All were seriously concerned about the obvious deterioration in his condition, and all their concerns were waved away by the seemingly professional staff who were on duty.

Why did all this happen? How did it happen? If we don't find out, could it happen again? Are there standards in place to make sure it doesn't? Is anyone accountable, in any way, for what happened to Peter? Well, we may soon enough know some of the answers. After months and years of pressure, with some outside help, Peter's family has managed to secure an investigation into the circumstances surrounding Peter's last few weeks as a citizen of our republic. That investigation is complete, and will be published soon.

OR WILL it? As I understand it, these are the facts. The investigation was carried out by Martin Hynes, a public servant of long-standing. If I'm any judge, he is a decent and compassionate man who would be painstaking in conducting an enquiry of this sort. His work was carried out in private, and I understand he reviewed extensive files and posed many questions to everyone involved.

Some time ago, he submitted a draft of his report to the HSE. That draft was sent, in the interests of due process, to each of the parties mentioned in the report. I gather it was also checked by lawyers. Naturally, of course, Peter's family weren't given it. When the parties involved had an opportunity to comment, Martin Hynes finalised his report. Peter's family were given to understand that the report would be published this week, and were made aware of some of its contents, although again they weren't shown any of it. They do believe, however, that the report raises serious questions and draws certain conclusions. In other words, there is accountability in the report. The degree of accountability will only be clear when the report is published.

But now, it seems, just as the finished report is ready for publication, someone has decided that, again in the interests of due process, the parties mentioned in the final document must be shown it again. At the least, this will mean a further delay.

This report must be published. There must be no question of any legal devices being employed to prevent publication or to water down its contents. If necessary, the report should be presented to the minister for health and published through an Oireachtas committee, thus giving it the full protection of parliamentary privilege.

Perhaps it is the case that the system is ready to give a full accounting in Peter's case. Perhaps there won't be the usual hiding behind the law, behind professional reputations and bureaucratic imperatives. Perhaps the system will recognise, just for once, that the death of a vulnerable citizen and the circumstances surrounding it should be an occasion of openness and shame, rather than yet more secrecy and 'due process.'

I believe in due process. It is a cornerstone of our system of justice. But increasingly I find this thought nagging at me. How is it that people with money and influence always get due process? And people like Peter McKenna seldom do? How is that? Or will it be different? This time, could Peter teach us all a lesson about what citizenship means?