David Norris (Independent) | Oireachtas source

Thank God for that - well done. Government Members are decent people and we can stand united on this motion. It would have been outrageous to have tabled an amendment to it. I thank the Government, as it is a good day for Seanad Éireann and Senator Marie-Louise O'Donnell. This important point has been addressed, but it did not receive much publicity. Last year a former Member of this House and a former Supreme Court Judge, Mrs. Justice Catherine McGuinness, chaired the Forum on End of Life which issued a press statement calling for precisely the kind of thing for which the Senator calls, that the Government prepare a national end-of-life strategy. The statement read:

We believe the time has come for the State to look at all aspects of end of life in Ireland and plan for the future delivery of care and services. The strategy should be wider than health care and reach into other relevant areas of life - economic, legal and administrative affairs. Death is a taboo issue. The State should take the lead in starting a national dialogue on death and bereavement.

Here in Seanad Éireann, thanks to our colleague, we have started to do so.
The enormous shift in the past 100 years has surprised me. I studied it when I gave a lecture in honour of Dr. Mary Redmond at St Francis Hospice. At the beginning of the last century the overwhelming majority of people died at home, while now less than one quarter do so. Although most people, 80%, want to die at home, 76% of them do not. We must take this into consideration and examine the environment in which they die. Acute hospitals are often noisy; there is little privacy; wards are mixed-sex; there is a lack of single rooms; other people may be watching television or joking while the dying process is ongoing. Naturally, the nursing staff are far more geared up to save lives. They are not even trained in the skills necessary to assist people when they confront this issue.
Each death is different and people have different attitudes towards it. While I am very lucky because death does not bother me, I know many are petrified by the idea of it. There is the question of the attitude towards doctors. Will they tell the person concerned? Will they tell the family? Who will make the decisions? The inclusion, as far as possible, no matter what the circumstances, of the dying person in all these decisions is essential for a dignified death.
Recently, a much beloved former Member of this House and a Member of the other House, Deputy Nicky McFadden, died of the cruellest disease, motor neurone disease. I have been reading the evidence of a nurse which fits in very well with what Senator Marie-Louise O'Donnell said:

The development of evidence-based guidelines for end-of-life decisions in non-malignant terminal illness is overdue. This work will be valuable from patient management and health service planning perspectives as it will identify and characterise the current limitations in care for a large proportion of patients with neurodegenerative diseases. Informing and guiding patients and their families through the difficult decision-making process to a peaceful death should be integral to the medical practice.

We all hope for a peaceful death. The great communion service and the mass include the words "Agnus Dei ... dona nobis pacem," "grant us thy peace." We can help by starting the debate.
I remember a woman who was a great friend of my aunt. She was a wonderful person, commanding and domineering. She would get turf for all of the distressed old gentlefolk and organise their free television licences. One day I told my aunt that I did not think the lady was well. I could see that yellow thing. She had the same cancer I have but nothing could be done at that stage. She went into a very expensive nursing home, which was appalling because although every luxury was provided, they were not interested. She fell on the floor several times and was left there for half an hour. When I telephoned her, she was in tears. She wanted to go to the hospice, but the doctors knew better. With all of her money, the doctors and the luxury, she was in misery. I called in a favour and got her in a hospice and her life was transformed. She could have a little glass of gin, play cards, have her friends in and live to the end. That is what all of us want, to have some quality of life before we go.
I also remember a friend of mine, a great character, who was an artist, and his partner, Caitríona, who lived on Mountjoy Square. He had a sudden heart attack and was taken into hospital where the last thing he heard was a drunken couple fighting in the corridor.

A young doctor came in and told his partner that he was dead. That was it. Then in they came and carted him off. She said that nobody there had any training on how to deal with a person who is suddenly bereaved because hospitals "don't do death". I think that they should start to do death.

There is also prejudice and stereotyping against various groups such as Travellers, people who suffer from dementia and gay people who experience what is called disenfranchised grief. Sometimes these people are not allowed to attend funerals or are not recognised as spouses. Occasionally this does happen. I will never forget when Micheál MacLiommóir died and President Ó Dálaigh, at a time when being gay was still criminal, reached across the grave to shake the hand of Micheál's partner, Hilton Edwards, and told him he was sorry for his trouble. What about people who suffer from cystic fibrosis which is a very special disease? We need to examine all of these matters. What about people with learning disabilities? Bereavement is often not just about the confusion of the person. Parents worry what will happen to their child when they pass on.

I shall make two final points. Sometimes terminally-ill children are discharged into the community but there is no place, help or assistance available for them at that point in their lives.

Finally, the State grant for funerals is gone. I would like the Minister to re-examine the matter and provide a cushion and help to people. If that were done it would indicate that we, as a community, care. I congratulate my colleague, Senator O'Donnell, on tabling the motion.