Mr. Bryan Nolan:

A question before the vote was directed to me about the need for education. There is a substantial need for education in the health service. Years ago people had natural skills about how to deal with end-of-life issues, because their relations all died at home and neighbours came in and laid them out and so on. I have met fully qualified staff nurses who have never even seen a person die or never even seen a dead person, so we cannot assume the people looking after the dying person know what is appropriate and what happens next. We would say that everybody needs some education. There are some who need more and then a small group of people probably need everything.

I would like to provide an example of how important the Final Journeys programme can be. Sometimes care is being delivered within a space. We do not even recognise who is delivering that care. In one Dublin teaching hospital, we took a group of staff who were working in a particular area - from the doctor down to the tea lady - and we asked them when end-of-life care begins. The clinicians all said it begins at diagnosis, and that when a person gets a bad diagnosis, we start caring for him or her in an end-of-life care way. We started drilling down through that idea. The next thing was that a little voice uttered: "I think that when she stops taking her tea, there is a change."

Everybody looked at this person, the tea lady. I asked her what she meant. She told me, "There was a lady here recently and when I brought her the tea she told me to go away with the small cup. She had a mug and she asked me to fill it. I got on with her really well and over time we had a great relationship. I knew the day I went into her and she told me she was done with the tea that there was a change. Very quickly the lady became unconscious. I used to keep an eye out for when there would be a slice of melon available. I knew she had a fierce sweet tooth and I used to nip into her when I could and rub her lips with the melon, so she would have the sweetness and moistness of it."

It was as if she had landed from Mars. There was complete silence in the room and everybody was looking at this person as if they had never seen her previously. That is the quality of care that is happening in her space. Where is that being valued? Where is it being captured? Who is saying, "If you are dying on our ward, this is the quality of care you can expect from our service"? Very often the people who have the deepest relationships with patients are invisible. They are passing in front of us every day and we do not even see them. Final Journeys is a wonderful educational opportunity to get people to take a helicopter view of their practice and to see who is providing care, because it is not just me, it is all of us. When we work together to provide a service, and use all the information we have about the patient and pool it, the only way is up. The patient will get a five star service.

In terms of the health care service, everybody in health care must have education, but outside in primary care, to refer to Professor Twomey's point, GPs should be involved. We do a lot of work with long-stay settings, and people often end up on trolleys in accident and emergency departments because decisions have not been made. The staff are unable to engage with the residents at a time when they are able, to talk about their wishes and preferences. We are making these recommendations now, and the Health Information and Quality Authority is saying everybody should have these conversations, but unless we educate and support staff for having these conversations, they will never happen. In approximately 80% of the admission documentation of the nursing homes I visit, the back page deals with spiritual care or end-of-life care. There is a line through it, "Not discussed at this time". How could one talk about end-of-life when somebody has been admitted to long-term care, to their new home? When does one talk about it? We need to support staff in their awareness of how to have these conversations, because they are difficult conversations.

There was a question about making staff confident and comfortable with end-of-life care, and where the patient comes in to all of that. If we are patient-centred and patient-directed, we could ask the person what is most important to them. Professor Twomey had a couple of wonderful questions earlier. One could even ask, "What do I need to know about you as a person that will help me to take the best possible care of you?" and "What are you most concerned about at present?". The GP could be helped to ask, when he is having his consultation with the patient long before there is any crisis or threat of illness or going into long-term care, "If you ever became seriously unwell, have you ever thought about what you might want? Have you any worries, wishes or concerns about how you might like to be cared for in the future if you became unwell? What do I need to know so I can help you with it?". We do not have these conversations, so decisions are made in crisis and we end up asking the family what they want us to do. With the best of intentions they want the best done for their mother or father so they ask that the parent be put in the ambulance and sent to the acute hospital. The poor patient ends up dying on a trolley, surrounded by strangers in an accident and emergency department, as was so well described earlier by my colleague. The way to get around that is to ask the patient.

Senator Burke referred to the legal issues. One thing struck me when he spoke about supporting staff. He mentioned the ambulance staff arriving when somebody has died and the need to do something. Whose need is it? Whose concern is it? Whose needs are being met in that space? Is it my need, as the clinician, health care assistant, nurse or doctor, to be seen to do something or is it what the person would want for themselves or is it the most appropriate thing? Sometimes, it is our need to do the task, because if I am doing a task I can prove I am of use. Sometimes, however, there is nothing more required than to say, "I am sorry that your mother has died".