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I have always been involved with death and dying in one way or another. Throughout my life I have spent years working as a nurse, funeral director and celebrant, so I have always been around people towards or at the end of their life.
In 2010, I read an article about a training program which taught people to support individuals and the people around them after receiving a terminal diagnosis. These individuals were considered informed companions who could support people from the time of diagnosis until however long their clients want them for. I was immediately interested and shortly afterwards arranged to speak with the founder of the program.
After that meeting, everything just made sense. It all just fitted with exactly where I was in my life. This was something which was talking about death and dying, but was also about supporting people to have some control and choices around the end of their life.
Becoming an end of life doula
I decided to enroll in the training program, which took around a year. The process has changed since then, but at the time, myself and around a dozen other people spent several days a week doing very experiential training. It involved exploring what death meant to you, what it meant within your wider community and your own position or fears about that type of thing.
The second stage was very much focused on the practical parts of becoming an end of life doula; what happens when someone is dying, the signs and symptoms of that, what is involved in advance planning for death and exploring what boundaries should be in place when you're supporting someone.
The third period of the process is consolidating all of that knowledge and learning and is a bit more advanced. It's very much about being comfortable with and understanding death and dying, plus making sure you're able to work alongside healthcare professionals to provide the best support possible for your client.
What does an end of life doula do?
End of life doulas support people in whatever way they want during the last period of their life. It's very much oriented to the individual and the goal is to ensure that our clients experience the type of death they want to have. We don't go in with a template of how we are going to support a certain person, because it depends on what that individual's needs are.
Firstly, we usually spend some time sitting with a client and talking to them about where they're at, seeing if they are clear about what they want from us and if not then we explore that further.
Our role could be anything from just talking to someone about their fears or anxieties around dying to helping them talk to the people around them about the fact they are dying or assisting with practical things like accompanying people to hospital appointments.
Often, we are the bridge between the person who is at the end of their life and the people important to them or the healthcare professionals caring for them. Often, it can seem as though those professionals are speaking in a different language, so we believe it can be useful for someone to accompany the person with a life-limiting illness and help take in what they hear.
The other really key thing we do is advance planning. This may take place early on or later in their diagnosis; making sure they have things like lasting power of attorney in place, that they have set up their wills, and most importantly, that they have thought about their death and how they want it to be. Where do they want it to take place? Who do they want there when they are dying? Where do they want to die? What sort of environment do they want?
The other things we do are event planning. For example, we may be involved in death cafes, which is a national movement providing an opportunity for people to come together and just talk about anything they want about death and dying with tea and cake. I believe that increasingly people want to talk about this subject.
Working with my first client
When I worked with my first client, I felt totally comfortable. I was confident about my abilities and had a mentor I could talk to about my experiences. I felt that I was within a safe environment and had enough background and training to support me. It just felt absolutely right.
The first person I worked with came to me thinking he only had three months to live, but ended up living five months. He just wanted some support and during that time I believe I enabled him to live the rest of his life to the fullest. For me, being an end of life doula is not about having all the answers, it's about being able to listen to your client in an empathetic way and trying to facilitate the best practice for what they want. It's about finding out what is going on with them and putting together something which is very individually focused. I wanted to go in with an open heart and feel what was going on.
After a terminal diagnosis, it's very easy to have a label on you: "Oh that person is dying, that's it." But actually, what we say is: "Okay let's sort out what you need to, and then we're going to help you live for the rest of your life."
My first client loved nature. He was not particularly physically mobile, but we got a wheelchair and went and sat in the park and we sat on the balcony and watched the sunsets in between hospital appointments. He wanted to experience life and I helped him find practical ways to do that in his last remaining months.
We had planned that both my client's best friend and I were going to be with him at the end of his life. I got the call when he was in the throes of death and I was with him when he died. It was very moving, but you have to keep some boundaries to be able to support someone, because it's not my grief, it's not my loss.
Of course, the reality is that when you're very close to a human being for a few months, you're going to feel some emotion around their death, but you learn to contain it in a way that is healthy. After my client's death, I conducted his funeral for him as we had planned. He wanted to do that, so I was glad I could give him that as my gift.
Managing emotions after death
Because of my decades of experience working as a funeral director and celebrant, I am used to managing my own feelings and don't find it exceptionally difficult to control my emotions. Obviously we each have our own triggers, but it's about being aware of those. The noise I keep in my head is saying: "This is not my grief, this is not my sadness." It's really important to remember that.
They need me to be strong and focused and be able to facilitate the support I am there for. Keeping part of myself grounded within my own life is really important.
Sometimes, if I have a really heavy session with someone, I can't help but become emotional. After all, if I stopped being compassionate, I would be rubbish at this job. But if I come away feeling like that, then I make sure I speak to my mentor or I go and do something really normal, like go to the grocery store to buy dinner for my family or go swimming.
I have my rituals. It's about acknowledging that it's tough, but coming away and processing that and grounding myself back in my everyday life, because it's not me dying or experiencing that pain.
The four main life lessons I have learned from my work
The most important lessons I have learnt from people, and I believe that they learn for themselves, is that what matters at the end of our lives is 'love'—love for our friends, for our family, for ourselves.
People also want to be remembered—not for the money they earned or the hours they worked, but for the type of person they were.
I have learned that being open and talking about dying is vital to being able to experience a good death. In my view, if you talk about death then it's actually much less scary. Since I have been working in this field, everyone around me is much more comfortable with talking about death and that takes away some of that fear.
Another lesson I have learned is that people who have advance planning in place and think about what sort of death they want; what sort of treatments they want, who they want to care for and the way they want to be cared for, can actually get on with living.
I think the two of the most important aspects are being open and doing that advance planning, but it is about being able to live your life in the most positive way you can in the time you have left.
I think by not talking about death and dying, it becomes this fearful thing. But by being open about it, you can expose death, take some control of the situation and have some choice. You can live.
Because I am so open and aware of death, I am able to live my life as openly as I can and makes me realize how precious every single day is. Without an awareness or acknowledgement of death, I believe people often take life for granted.
Nett Furley a director of End of Life Doula UK, who supports those towards the end of life in and around Merseyside, England. You can visit their website here.
All views expressed in this article are the author's own.
As told to Monica Greep.
