What is an End of Life Care Trainer & Educator?

Since I was sixteen years old, and working as a care-assistant, I have been committed to understanding and alleviating suffering for all those experiencing ill health and for the dying and their families. I then went on to become a nurse, a trainer, a complimentary therapist and a spiritual care educator. I worked for many years as a Clinical Nurse Specialist with a Community Palliative Care Team delivering holistic palliative care to those with life-limiting illnesses, the dying and their families in Dublin. I also began providing End-of Life-Care (EOLC) trainings on the Principles, Philosophy and Practice of Palliative Care nationally. I am fully committed to raising awareness around EOLC issues including the need for the delivery of non-denominational Spiritual Care. My motivation for ongoing education is an aspiration to share one's knowledge, skills and attitudinal competencies in order to up-skill multi-skilled health care professionals and the public, through increasing their capacity to facilitate a good dying process for all.

It is relatively new to talk about living wills in Ireland?

It is. It is hot off the press at the moment because there is an assisted decision capacity bill only passed by the Oireachtas in 2015.Within this act then there is a new provision to legislate for advanced care directives & they are also called living wills, they actually mean the same thing. The really big thing here in Ireland with the passing of this bill because it replaces a victorian era looney regulation bill going back to the early 1870s, and actually at that stage we were referring to individuals with intellectual disabilities as idiots & lunatics and unsound mind. So finally we have replaced this outdated law now with this modern human rights compliant mental capacity legislation. It is exciting times.

Your passion Katie, comes from the fact that you have worked  in the area of Palliative Care. So you are working with people in their end of life journey. So what struck you as a problem for people in that particular journey of their life, when they told their diagnosis, prognosis was not good?

That’s a really good question, and I could bring a lot in, but actually one of the things that I would say more than anything is that people are not prepared. They’re not prepared, and even about outlining our wishes and preferences are, and what gives meaning to our life. We do not plan ahead, we are alway procrastinate. For us to even let anyone know for what we want relating to our health care. This isn’t only about end of life care, it’s about our health care wishes. It is the wrong time to do an end of life care directive in an A&E department. We are very hesitate in having these conversations & discussions & reflecting around these issues and speaking to our family around them.

But we make lib comments about what should happen when we die, but people aren’t sure did we mean that.

But you know if anybody even brings up a conversation with us. We all know and have friends who is ill, and even family members. They might even just let the mask fall a little, and say I might be dying, or I am worried about something. Then we immediately close the door and say, Ara not at all, you’re fine. We don’t allow the conversation to develop, we don’t give people an opportunity to express their wishes.

A good answer to that might be why do you think that?

On because of fear I think.

No, is that a good answer? If someone says to you I think I’m dying, why do you think that? Rather than not at all.

Why do we say not at all?

If I were to say to you, I think I’m dying. You would probably say, why do you think that, rather than not at all.

Absolutely. I would say you explore. You probe what the person knows and what they realise. You don’t go confronting denial, but there are ways of working with people when they start coming out of denial. Denial in itself can be fluctuating, but there is a way of accommodating the questions, just as you said Sean, why do you think, why do you feel that way. Is there something that has happened, that has made you worry about that today. This is actually one of the things that we do on the reflection days, about helping people have these difficult conversations. About accommodating them, and about meeting people where they are at.

I’m just after coming back from Kenya and I visited a hospice there, as much as you could call it a hospice, you know, cos oivously they don’t have great provision. I was speaking to a consultant there in Palliative Care and he was telling me about people who come in. They were all people who came from the outside in, and it was more for a support group. He showed me a note of a person that had been referred, and he said on it, OUTCOME, or whatever the word was, and it said Not Good. And I wondered would the person see that, would they have a right to see that, or is that something that the consultant would have the note that the patient wouldn’t necessarily have.

In our culture, its interesting because yesterday I was cofacilitating a day with Chinese nurses, and actually what they were saying, was that if somebody there in their culture has a diagnosis, they as nurses tell the patient that they don’t have cancer, because if they realised that they had a terminal diagnosis, they would see that as a terrible outcome. And some of the people actually can’t cope with that. Whereas here, what health care professionals often do is that we always act from person-centred care, what we often do is go the patient’s or individual’s family members and discuss their health problems with them. When actually what we need to get across is, we need to ask the person that is going through it what do they want. They are legally entitled to know all information and knowledge around their illness. If they want to withhold it from others, they are quite entitled to do that. The family are not legally covered to withhold information from their parents or closed loved one.

In reality, you know it better than I, but I have experience of it when my mother died of cancer. That is it a very difficult area, because I know for instance a lady whose husband was ill, who she told the Dr not to tell him the outcome was as bad as it was. She said he went ahead and told him and he gave up. And she knew her husband better than the consultant knew her husband. Thats a difficult one, isn’t it?

It is indeed. There is a lot of denial & collusion that goes on in families.  And when I started working and training in Palliative Care over 15 years ago, it was the thing at the time to encourage people to come out of denial. Now actually we see that denial can be a really good coping strategy for some people. If it facilities them and improves their quality of life, then it is not up to anybody really. If the person wants to know, they have to be told, if they ask the questions they have to be told. But if they don’t want to know, and they don’t ask the question, it is not up to us to force them out of denial.

Is there a uniform way of doing it. Do consultants all act in the same way when they relay this information or does it depend on the nature of the consultant, because some of they are very blunt and some are much more gentle with the truth.

 I think there is a huge amount of work & trying & educating around communicating and initiating conversations around death and dying, which are so important. Because if we think about as individuals we have a fear of dying, and so do some health care professionals, so they bring their own losses and fears to it aswell. We need a whole structure of working and skilling everybody, not just Doctors, but all health care professionals. There was a practice where bad news was delivered in corridors, and it was like a dump and dash, cos there was a way to get out. I can see now how much more aware and more sensitive about having these conversations.

About the events. The people who are coming to your events, presumably are ready to face up to the fact that I am going to die, and here’s what I want to happen to me?

This is actually a training & reflection day to raise public awareness. It is for the public. It is about making our decisions & wishes known about our health care. It is also to up-skill health care professionals, if they want to, because there are 7 continued educational points allocated to the day by the Irish Nursing Board. It is really for everybody, just so we have these discussions, and conversations around it. It is about demystifying the process of writing or composing an advanced care directive or living will.