Oireachtas Joint and Select Committees
Thursday, 14 November 2013
Joint Oireachtas Committee on Health and Children
End-of-Life Care: Discussion (Resumed)
10:15 am
Mr. Bryan Nolan:
I thank the Chairman, Deputies and Senators. We welcome this opportunity to talk to the committee about staff development and education in regard to good end-of-life care in Ireland. It explicitly acknowledges that we can make a difference through awareness-raising and training for health care staff and professionals. At the end of the day, I am here to remind everybody that fundamental to good end-of-life care is the person, the patient or the resident. We have to keep them at the centre of everything we do.
As we have heard, end-of-life care is important to every one of us. It will be of interest to all of us. Sooner or later, it will be us or someone we know and love. Death and dying are part of the human experience. In the Irish Hospice Foundation, we believe that nobody should die alone, frightened, lonely or in pain. Unfortunately, for people in Ireland today, death and dying can be a very lonely experience. If one was parachuted into Ireland from outer space and landed at a funeral, one would think we were brilliant at death and dying. We are great when people are dead. It is no problem in that we do not have to talk to them. We can talk about them and we turn up in our thousands to celebrate their passing and it is a wonderful experience. People often say they are not afraid of being dead but that they are really scared about what comes before it and about the dying process. Why are they scared about that? They are scared because it is the loss of autonomy, the loss of their sense of control, the loss of their dignity and the fact that nobody will engage with them about what is important to them and their concerns.
It is estimated there are approximately 95,000 people working in health care in Ireland. If one is working in health care, potentially, death and dying will be part of one's job and we need to recognise that. Today in Ireland, 80 people will die, five of whom will die in a hospice which is the five star care one will get. What about the other 75? Can we ensure that those 75 have access to good care too? The only way we will do that is if we train and enable staff through good education programmes so that they will be able to engage with patients or residents about their concerns and end-of-life. Unfortunately, at the moment, it is a little bit of a lottery and it is down to whom one meets on the day and how comfortable the person who is dealing with one or one's family is with end-of-life, conversations about end-of-life and what is important.
The Irish Hospice Foundation has been involved in developing or grant-aiding the development of a wide range of initiatives aimed at health care staff in the last decade or so. We have provided training for more than 5,500 people - members of staff in the health care setting - in the past three years to help them to make a difference to people at end-of-life. We have three different staff development workshops. Two of these workshops specifically focus on communication and connection with people at end-of-life. The third helps staff break bad news more sensitively. Details of the workshops are in my written submission. We know these workshops work. We have had them evaluated by UCD in 2011 and by Trinity College in 2013 and both of those evaluations attested to the overwhelmingly positive reactions of those who attended.
What are we trying to do? The aim of the workshops is to try to help staff to be a little more confident, competent and comfortable around the people for whom they care at end-of-life and to be confident enough to talk to them about what really matters to them. In this sense, our workshops are very focused on person-to-person communication because we know communication is central to good end-of-life care. In addition to everything else members have heard, I am here to remind them it is fundamental to good end-of-life care that we keep the person at the centre of everything we do. We remind staff that good end-of-life care is fundamentally about respect and about really connecting with the person. There is no better way to show respect to someone than to talk to them and to listen to them, especially at a time of loneliness and distress. There is no better way to care for somebody than to actually give somebody one's wholehearted attention and to allow him or her to express his or her concerns and for us to do our best to facilitate his or her preference. A frequent outcome of participation in our workshops is that staff discover that they can become more relationship-focused within the course of the normal working day and that it is not just about the task but about seeing the person.
We take a hearts and minds approach. When the thank you cards come in, they thank the staff for being so professional and compassionate. They always link the two. People want us to be professional - that we know what we are doing and that we are confident in what we are doing - but they want us to be compassionate as well. When we have the balance of hearts and minds, then one can fly if one is the patient receiving that service. We look after people's minds. We educate minds by giving staff good practice tools and theories about how to talk to and listen to people about their concerns and preferences and about how to break bad news, which is the hardest part of anybody's job, how to help people deal with the impact of that news and how to initiate difficult conversations and respond to difficult questions.
We also put a lot of emphasis on communication about the heart aspect that death and dying are not just about procedures but about my passion that we need to get this right. People only die once, so it is not a one size fits all. We cannot pick the book off the shelf and read all about it and have all the answers. We are all different, we have different needs and different worries and concerns. I cannot assume I know what someone wants unless I ask the person. I will not find out what is important to the person unless I take the time to listen. All too often, patients and residents will worry about their deteriorating condition and make many efforts to engage with staff.
They will say, "I am not getting better, am I?" or, "I don't think I am going to make it. I think I'm finished. Am I dying?", and all too often the response of the staff, who are coming from a good place, is to try to keep the person up-beat and hopeful rather than finding out what lies behind that question. Relationships matter, but particularly when we are vulnerable. Relationships between patients and residents are particularly important.
What we are trying to get across is that our work with staff is about reminding them of their own humanity and to remember always that if they are dealing with a patient, a person is more than their illness. If they see them only as their illness they will miss out on huge opportunities for healing and wellness.
Patients will often ask us about their end of life. Questions such as, "Am I dying? I am not getting better" are often met with, "You're grand, pet. I'll get you a cup of tea". The question, "Am I dying?" will be met with, "Not on my shift". If someone was in bed and they had a sense that they were getting weaker by the day and that their life was slowing ebbing away, and if they were constantly asking the people caring for them, "Am I dying? I am not getting better. These tablets do not seem to be working any more" and getting the reply, "You're grand. We are going to look after you. Don't be worrying about that", how would that make them feel over time? Would they keep asking the question or give up? I believe most people would give up. The staff would then tell their relatives that the patient is getting very withdrawn. Why? Because nobody is engaging with that person. Nobody is asking the patient what is important.
I will tell the members a couple of stories, one of which in particular emphasises the need to engage with people. A staff member in a paediatric hospital I was working in told me this story against herself, so to speak. She said they had a little fellow with cystic fibrosis whom they knew since he was a baby. They knew all about him and knew all the members of his family, and he knew all the staff. She said he was not for transplant. Everyone knew he was a case for TLC. He was beginning to die. She went in to him one morning and asked him how he was and he replied, "I'm really lonely". She asked him what was wrong and he said, "Nobody is talking to me any more". That emphasises the importance of good training for staff in terms of communication. There is something about attaching end-of- life to somebody's condition. We all fall off a cliff, so to speak, in that regard. We stop engaging with people on what actually matters.
We mentioned earlier a good death. What is a good death? A good death is me being at peace with myself. For me to be at peace with myself I have to forgive myself, let go of issues, forgive others, have conversations about what I need to do, put things away and be in a state of readiness. How will I do that? The only way I will do that is if somebody sits down and is willing to have conversations with me, and the only way I will be able to have those conversations with that person is if I am trained to do it. We cannot assume that people have these skills because they do not.
In terms of what we are looking for, and we are talking about 95,000 people, we believe everybody should have access to training in end of life care. The system must take ownership of that training and development. The Irish Hospice Foundation recommends that the health service takes responsibility for delivering good end of life care training and development, and we must take on board the private contractors as well.
I will conclude on staff support. The system is creaking. Staff are doing their best to deliver good quality care but they are struggling with it. We are not looking for new five star centres or for more people to be employed. We want to get staff to acknowledge that what they do is very difficult. Not every death will affect one but some deaths will, and we need our colleagues to acknowledge that for us. The question to a staff member should be, "Is that family gone? How are you? Do you need to take five minutes? We will cover for you. Go off and have a cup of coffee" but the question normally asked is, "Is that family gone? Okay. I need you to do X, Y and Z". They write on every carer's tombstone "Own needs not met". We are very good at giving it out but we are very bad at nourishing ourselves. We must enable staff to recognise that this work is tough and that to continue doing it we must be skilled, and we must look after ourselves. I thank the members for listening and apologies for going over time.
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