An end-of-life doula is like a midwife at the other end of life, helping people and/or their families make the transition from life to death by providing emotional, spiritual and practical support. Treza Gallogly, who chairs the End-of-Life Doula Alliance Aotearoa, tells Emily Simpson about what the role requires and what she's learned from it.
Death isn’t an emergency. I always say to people, when somebody dies expectedly, just do nothing. Do nothing until you feel ready to stand up and move. And then go and make a cup of tea and come back into the room and sit with that cup of tea for a while, before you call anybody or do anything.
That time when a person takes their last breath is a deeply spiritual and sacred time and once you get up and start making phone calls, that precious moment is gone. That's when the chaos and the busyness starts and it doesn't stop again until after the funeral, potentially.
I've worked with families where a parent has died and their young children have been there with them during the death and afterwards, when their body was at home. It's really sad but it's also beautiful – the children come away feeling like they were involved with their mum or dad and were able to make some nice things for their coffin, to write poems. Those things are really helpful in terms of the healing process.
We need to talk honestly with children about death. We need to use real words like “Daddy has died” not “Daddy's gone to sleep” – because then they're going to go to bed at night and they’re afraid to go to sleep. We've got to use real words.
The work of doulas is not new. In the old days, when someone was birthing or dying, they called the midwife who came down and helped the family and it all happened at home and the community came together and had a wake and told stories and then they all carried the body down to the graveyard. Death was a part of life. Children saw dead bodies, they were there when their grandparents died – they might have been lying in the bed beside them. They weren't alienated from it.
My father was Irish and I grew up very connected to the Irish community here in Auckland. The Irish and the Māori and some other cultures do beautiful death ceremonies and rituals and create a lovely meaningful time after death, but they still struggle often with leading up to a death, planning a death.
In Western society in particular death has become very medicalised. We focus on keeping someone who's dying comfortable with medications, but because we often don’t talk openly with them about death, we miss the opportunity to focus on what their life was all about. What’s important to them? What do they expect to happen after they die? What legacy do they want to leave behind? Talking about these things can relieve fear.
When I was 17, I had an uncle who died suddenly. And I remember my dad saying to me, can you go up to the church and put Irish flags on the handles of his coffin before the funeral? I went by myself up to the church and walked in and his coffin was sitting at the front of the church. There was nobody around. And I remember freaking out and going, oh, my God, they've left Uncle Paddy here overnight. They probably hadn't, but I was horrified at the thought of him being by himself. So I think I’ve always had deep feelings about death and about our connections to death and to each other.
People often feel alone when they're given a terminal diagnosis because no one will talk about it. I think we create a silo for people to be stuck in when they say “the doctors have told me that I've only got six months to live” and we all say, “don’t talk like that! You’re gonna beat this thing!” That denial of death takes away the opportunity for loved ones to create special memories. Because when you know your time is limited you only want to do things that are really important and meaningful with those who love you.
When you think about birth, both bodies – the mother’s and the baby’s – know what to do. Death is the same. It's just a journey and there are certain things that happen. We might get afraid of those things, because we're looking on, but they’re absolutely normal. Things like terminal agitation – sometimes people get really agitated a few days before they die. Or sometimes they have terminal lucidity, where they have a really awake period and you think, oh, they're fine, they're not dying at all. And then they go straight back out of consciousness and they pass.
When people are dying they tend to have fewer and fewer people around them as the journey goes on because they don't have the energy, their body is busy dying, it’s doing work, it's labouring. So you end up with just the people who are extremely close to you in the room. Some people wait till everybody's left the room to go out for a bite to eat or go to the toilet and then they take their last breath when there's no one in the room. That’s actually quite common.
People die the way they lived. If you’re a person who has lived their life being honest and open to the things that happen on life's journey, you’ll usually be more open to death and more accepting of it. People who have deep-seated regrets or things they’ve hidden in their lifetimes, people who are not willing to open up with others, they’re not going to do that when they’re dying either. Your personality doesn't change just because you're dying.
I started my career as a nurse and worked in TV production, I've run businesses, done international tradework – I’ve had an amazing career – but after I helped a close friend through her dying process I decided that this was what I wanted to do. So I did some palliative training, including an End of Life Doula programme, and stepped into this work. I haven’t looked back.
Doulas bring a calm presence to those they serve. We show up, ready to do whatever’s needed for that particular person and whānau. It’s different every time. We also do a lot of pro bono work. We're out in our communities, doing presentations and workshops on advance-care planning and after-death care. Some of us do death-without-debt workshops where we teach people who’ve got financial worries and can't afford things like funeral directors' fees that there’s actually a lot they can do themselves.
I make sure I arrive at every appointment 10 to 15 minutes early and I’ll just sit in my car and sometimes use a meditation app. So I know that when I walk in and meet the family I’m clear-headed and calm. As doulas, it’ our job to bring a steadiness to a family.
I'm currently making some changes in my life, like selling my house of 29 years, because I'm 65 and I want to make the absolute most of the years I have left. I’m not afraid to die but I'm particularly cognisant of my own mortality because I’m working with people in their 40s who are dying I know I’m so lucky to have gotten this far. I want a house with a view of the sea and I want to spend more time with my children who live in Europe, so I’m making those kinds of plans.
More information on end-of-life doulas can be found here.
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