Jillian van Turnhout (Independent) | Oireachtas source

I thank my colleague, Senator O'Donnell, for putting forward this motion for debate and for starting a conversation and discussion on this issue. Senator O'Donnell accompanied me, as a member of the Oireachtas Joint Committee on Health and Children, to the committee hearings and we both participated actively in them. I learned a lot by having her there. In developing this overarching strategy, I suggest the Minister of State needs to look no further than Senator O'Donnell to lead the work in this area.

As Senator O'Donnell said, we die at all times, at all ages and in many different ways. When we talk about end of life, we often forget the word "care". People only hear the words "end of life" and think of finality and the last moment or second. However, this motion suggests for me that end-of-life care refers to those days, months, weeks and years leading to death. Who knows when death will arrive? None of us has a time stamp that tells us exactly when the moment of death will come. Therefore, we are talking about care over that time.

Think of the language we use about death. We start with children by saying things like "Granny went to sleep". It is no surprise then when the child says, "Mammy, I do not want to go to sleep; I am afraid I will not wake up." This is like telling a child whose parent has been imprisoned that the parent has gone off to work, leading the child to have a fear and resentment against work. We need to be careful about the language we use when talking about death, from talking to children all the way through the care system. We often use medical language in a way that does not allow the individuals involved, their families and supporters to use other meaningful language. This does not allow them express their fears and admit they do not know the answers. Often there is no right answer, no pathway or set of steps to follow or to explain what exactly will happen.

Often when we speak about end-of-life care, we are talking about care for older people, but we must be equally cognisant of the work of organisations like the Jack and Jill foundation and the LauraLynn Children's Hospice. I would like to mention in particular the Irish Hospice Foundation and the eight children's outreach nurses it is providing. I thank the foundation for providing these nurses. I am very proud to chair an organisation, Early Childhood Ireland, which has raised funds through its pyjama days for these nurses. I believe that we have raised €1 million over four years for this outreach service.

I want to speak personally on this issue. I know that the story the Minister of State often hears in the Department is the negative story, but I have had a very positive experience and I want to name the Clonskeagh community nursing home in this regard. I believe the word "community" is very important in regard to this issue. During the committee hearings, one of the witnesses spoke about the triangle of care - the staff, the patient and the relative and went on to say that staff in this area need three Cs. They need to be confident, competent and comfortable. I came up with my own three Cs when talking of the individuals concerned, because we often remove these three Cs, consent, choice and control from the individual.

The three Cs for an individual describe what we are talking about here. We are talking about consent, choice and control and when control is removed from the person. My experience in Clonskeagh has been that one can pop in at any time, because it is a home. My dad is at "home" in Clonskeagh. People there go to bed at all different times of the day and night. There is no set bed time. When my dad was in another hospital, I registered him to vote in the children's referendum because I wanted to be sure he got to vote on that issue. He was the only resident in that hospital to vote at that time. However, in Clonskeagh community nursing home, everyone is registered to vote, because it is their home. We often seem to push people into a nursing home and say that is it and confine them to that, but that should not be the case. In Clonskeagh nursing home, they celebrate the good days, have parties and invite singers in to sing. It is the kind of atmosphere we would all want. It is about consent and control. Staff never force anybody to do something or to take part in something. The individual has control over what he or she wants to do.

We heard again and again in committee hearings about staff, which includes cleaning, catering, nursing and care staff. We are not just talking about one group. The idea that only one person talks about death or end of life is wrong. Should we have to wait until that one person is on duty before a family member or individual can ask a question? We all face the cliff edge, but do not know how far it is to get to it. We need to look at how we deal with this.

Senator Burke mentioned accidents and emergencies. I believe there is too much reliance on a medical approach in this regard. We do not need to take the medical approach all the time when dealing with end-of-life care, because this is not always the answer. That is not part of the choice and control for the individual concerned. The person does not need to be in an accident and emergency unit. Instead, people need care and support at that difficult time.

Some particular issues were raised during our committee hearings and I have raised these issues at quarterly meetings with the Minister. These particular issues concern advanced care directives. I believe we wait far too late to take these on board. We learned at our hearings that in Belgium when one buys a house, one also makes a will and makes out an advanced care directive. This is seen as a positive move, not a negative one. We need nurses who can prescribe medication and a provision allowing ambulance services to pronounce death. There is too much use of resuscitation by ambulance staff to ensure they get people to the hospital where they can be pronounced dead. Rather than this, if somebody has died at home, we should allow the ambulance staff pronounce the death in the home.

We need this overarching strategy. I look forward to the report being produced by the Oireachtas Joint Committee on Health and Children. I thank my colleague, Senator O'Donnell, who is a fount of knowledge in this area. Personally and professionally she has been a great resource for me. I believe she would play a strong role in developing the strategy.