Rose Sexton is a death doula who lives in Mount Beauty in Victoria. She supports those who are dying and those who are living to live a more conscious life.
Rose: Death doulas are people who are drawn to those significant moments in life, like life and death.
Rose: No, no I’m not even a midwife. Never did that training unfortunately. No, I’ve just always been drawn to palliative care since I started my training as a nurse 35 years ago. Just really connected with that experience. It’s just something I’ve always found interesting. I’ve worked in oncology and I remember saying to myself, “Working in oncology and palliative care is the kind of nursing that really makes sense to me”. For me, being a surgical nurse and patching people up, and saying “there you go” and never see them again isn’t my kind of nursing. It’s very task orientated. Being a doula is very different. You establish relationships with people and get to make a real difference at significant moments in people’s lives. And not just the person who’s dying you know, it’s all the people around them as well. And it’s very much about relationships and communication and you knowing that’s a really key part of the work. So a death doula themselves is someone who’s not necessarily medically trained.
Rose: No, well I mean (laughing) what’s the worst thing that’s going to happen? You can’t kill anybody.
Rose: Definitely, although for birth doulas there’s no regulations around them because they’re a support person; they’re not registered and don’t have any sort of legal obligations. Home midwives need to have that of course, and if I was a nurse going into homes and giving injections and things, then I would need to have all that regulation behind me, but as a doula, I’m just there as a support.
Rose: It should be, yeah. And I think it probably will be more and more. We did training with a woman last year and she’s got years and years of experience as a birth doula and a death doula, and she comes to an agreement with the family depending on what suits them. And it can be they take you on for 12 months…
Rose: Well, it is. It’s impossible.
Rose: No, but if a family have an idea in that a doctor might have given them a prognosis of 6 months or less than 12 months…
Rose: Yes, it’s a coaching role. That’s the way I see it more than anything. I like that. And mentoring, although that suggests that you’ve been through it yourself (laughs). I think coaching is probably the best way and the value is to have someone there who knows what it’s like. Because a lot of people come to a death bed with no experience of what to expect, what it’s going to look like. Both of them, that’s the dying person and their family. Not many people get a chance to go through that very often, so if you’ve got someone in the room who’s familiar with this, who’s comfortable with it, they know what to do and what to ask for, it puts everyone at ease I think. And so often whoever is nearest and dearest to this person who’s dying, they’re going through their own stuff. It’s a discreet kind of experience.
Rose: Yes, and often they’ll sublimate their needs because they think it’s all about them. They’ll be, “Oh don’t worry about me”, it’s all about this person who is ill. But you know they’re going through their own grief and fears and confusion too. So that’s a separate experience for them than for the person who’s actually dying.
Rose: Yes, and I think to have someone else who’s not in the experience themselves, gives them someone to lean on and bounce off and (laughing) all those other kinds of clichés. To just make it easier for everybody. And a lot of the time the person dying will have this question or they want to talk about stuff, but they can’t talk to their family about it because it will upset them too much so here’s this person who’s quite neutral who they can discuss this stuff with, or they can even have a talk to them before they talk to the family. It’s all just so unknown; they’ve never been through this before you know.
Rose: Yes, and it’s great to have that one person. That’s the value I see, is to have that one person who can be the ‘go to’ for all those resources, that’s what I would hope, to have a bird’s eye view and be able to say, “This is what will help in this situation”. A lot of people when they get cancer or are placed in palliative care or at the end-of-life train, there’s so much available that they’re not even aware of. They don’t know they can ask for it.
Rose: Mmm, and to draw all that stuff together in one spot, they might go to the oncology specialist for one thing and the cardiac specialist for another thing, or even their GP. But all these people aren’t necessarily talking to each other and they aren’t seeing the whole picture in a holistic sort of way.
Rose: Yes, or there’s the “I don’t want to bother them” or “I’m not that important.” There’s all that sort of stuff with doctors. You know, a lot of people won’t talk to their doctors about much.
Rose: Mmmm, yes. So end-of-life coaching can start from way back, but in terms of death doula-ing, the tradition could be seen as the last days and the final hours when there’s someone in the room who can do things like directing traffic and making sure there there’s one person to say “these people need some time here”. Better than the family saying, “Well, he doesn’t want to see you.”
Rose: Yes, it just releases everybody to experience what they need to experience and let that one person, that death doula, be a conductor in some ways. Providing this safe space.
Rose: Yep, definitely. And also the idea that talking about death, the main objective of that, is to encourage you to live a better life. Live your life more fully and sort of not be afraid. Because nearly everything we do is designed to protect us. All the things that we do to make sure we’re safe, to keep ourselves well-fed you know, we’re constantly running away from death and we don’t even know it.
Rose: So if you’ve had a look at it (death) and faced it down, it releases you from a lot of fearful behaviour or fearful thinking and makes you…
Rose: Yes, and you can be a lot more conscious of the way you live your life. My friend Bill has this saying: ‘Death enchantment for life enhancement’. He’s a genius.
For me, I’m always playing with that idea… of “if I died now, what would that be like?’”, and what’s the worst thing that could happen? And I just keep on asking the question until I get to that deeper fear.
Rose: Yes, because it’s like the (proverbial) wrecking ball that wizzes past your ear… woah, missed it this time. It’s a bit of a wake-up call that makes you think well, it could be anybody. You know, I’ve got a friend who’s got bowel cancer and she’s been dealing with it for a couple of years. And in the beginning it was like “No, you can’t have cancer, you’ll be fine.” But she’s been through all the treatment and it keeps coming back and so now I’m facing the possibility that she might not actually survive.
Rose: Very close. She’s in my inner circle. Just herself, my sister and me.
Rose: Well, yes, if that’s what it comes to, it’s going to really challenge me. So she’s been resistant to getting into any great discussions about “this could be it… maybe I’ve only got 12 months”, so I’m actually trying to withdraw my investment in future stuff because she’s here now.
And so we were on holidays when one of her cousins came to visit and she said “I don’t want to serve other people’s need by saying oh, it’s awful you’re dying” – you know other people love the drama, especially when it’s not about them. But it’s also that people get off on being the ‘caring friend’ and she doesn’t want anything to do with that. So we had this really nice time with this cousin and she and I were talking at one point about Christine, but we didn’t go on too much. Then about a week later I was talking to the cousin on Facebook and she said, “Our holiday was cut short because my brother-in-law’s died from a cerebral aneurism.” So, there it is you know. We’re so busy looking at the poor person with cancer and someone else drops dead. It could be anybody, we just don’t know. You know I could say that Christine won’t survive the year and then I could get run over by a bus tomorrow.
Rose: Yes, that you’re safe now. But you just never know. You never know what’s coming for you. But to see someone who is young, someone who has been recently diagnosed and is dying. Or someone who out-of-the-blue, shouldn’t be dying now, it does bring that back to you and say “I remember now, it could be me next”.
Rose: Yes, and no. I certainly don’t agree with the five-year plan idea. It is dangerous to invest too much in things you think you’re going to be doing. You know that ‘I have a dream’ sort of thing. Because it makes it hard if it doesn’t work out.
Rose: Yeah, that’s right. It’s nice to have preference and think, “yeah that would be really good” and make steps towards it. Yes, attachment is a dangerous thing. I still do it of course.
Rose: Yeah, being conscious of what you’re doing. That’s another part of my passion, just in general encouraging people to talk about death through ‘death cafes’ and the trivia nights.