Death As A Rite of Passage
A wonderful conversation with Rose Sexton and Nicole Parker from End Stage Matters. They are both End of Life Doulas, and we're talking about Death As a Rite of Passage.
Nic and Rose both speak about their own experiences with death, their professional background, what moves them to do this profound work, and the actions they are taking 'on the ground' in North East Victoria to improve death literacy.
Death Cafes, Dying to Know Days, a Play - they're doing a lot of change work, opening up spaces for people to get educated about their choices.
Rose is also a Palliative Care Nurse and Nick is both a Health Coach and a Counsellor.
I thoroughly enjoyed spending time with these women and feel a lot more informed about what is possible. They touched on how poorly our culture handles education around death as well as the importance of preparing for the transition from this life to the next.
I imagine we could go a lot deeper down some of the paths we touched on in this particular conversation.
If you'd like to know more, you can contact Rose and Nic via www.endstagematters.com.au
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Episode Transcript:
(00:15)
Good morning to you both. Now I've got Rose Sexton and Nicole Parker here from End Stage Matters and they are both end of life doulas and we're going to talk about death as a rite of passage today. Rose is also a palliative care nurse with years of experience and Nick is a very good counsellor and she's also of course a death doula.
How on earth did you get into this role? I mean, it makes sense, guess. Counselling, palliative care nursing, but end of life doula. What does that actually mean? And, you know, what does the concept of death as a rite of passage mean to you? mean, there's huge questions here. So take it away.
You go first, Nick. I was going to say, good morning. Good morning. Well, I think my journey towards an end of life dole was the death of my brother. And it happened a long time ago, but when I was in looking for what to do next in 2018, I went to a workshop on starting a small business and I had one idea and then there was a birth doula there and I went that's really interesting and I went home and researched and I found death doula and then I thought this is what I want this is it this is how I want to be so then the following the following weekend was the workshop on end of life doula the first foundational workshop so I went from my training in Vanilla for opening my business to Melbourne to the workshop. So it was very synchronistic. And then the following weekend was the four day workshop. So I went again from Vanilla from the business to, the four day workshop in Melbourne. So from then on, I was sort of pretty hooked and wanting to do it, but it's taken a long time to get going. I've tried all sorts of things, but I think Rose and I met up in 2018 as well or 2019, think 2018 or 2019, connect, one of my strength is a networker. So I was connecting all the dualers to see if we could work together. So Rose and I hit it off and then we went on our adventure doing a lot of death literacy via a play Rose and her partner had, what was it called Rose? The night, the Death Trivia Nights. We've dressed up as all sorts of different things. We've done Dying to Know Day, Death Cafes, a whole lot of different things. we've kind of done that right across the Northeast. So now I'm doing regular death cafes. But I'll let Rose describe a bit more about how she got into it and also about what our role is because it's quite diverse in our roles.
Yeah. Yeah. Beautiful.
So for me, I think I've had an interest or a career long interest in palliative care. When I look back in my 40 plus years of nursing, I've always been drawn to this kind of space got into oncology nursing fairly early and did some study, did little courses and things around palliative care, even like way back in the 80s. I did some study then in palliative care in 2008, 2009, 2010 and then I met Bill in 2015 and he was a yoga teacher, helping people. He was helping this one particular man who was facing end of life and he was just sort of saying, “I wish these people had somebody to navigate through the whole sort of mess of end of life”. He said that he and his wife were just sort of swimming in this, bobbing about in the ocean and not really knowing what to do and what kind of supports are out there. And so through that conversation, we just sort of, I don't know, I don't know exactly how we stumbled on it, but we did a web search and found this role of a death doula. I thought, wow, that sounds exactly what I'd love to do, so we researched it. I did some study with a woman in the States and then I went to Hawaii and did a week long course in Hawaii as well. So there's people around the world who are obviously teaching it and the UK and the US are much more further ahead than Australia in terms of having death doulas sort of embedded into the health landscape. And of course, from my experience, it was like, yeah, I want to be a death doulah and know all about death and then people started dying.. Thanks very much. It's like, I'm fine. So yeah, my best friend died in 2017. And this was like, we started looking at this in 2015. Started exploring things and then she was unwell and she died in 2017. And then fairly soon after that, or even as that was happening, Bill with my mate was diagnosed with a secondary melanoma. And so that was a two and a half year journey. And it was amazing to go through that with him, who was, you know, sort of totally wide-eyed and happy to grapple with the whole thing. He wasn't someone who's saying, “I don't want to talk about it”. So it was an incredible experience and certainly taught me a lot. So he died in June of 2019. So I think that really cemented my commitment. It was a real internship for sure.
It sounds like it…and that's very close and very personal, like Nicole's experience,… So with Bill in particular, because he was wide-eyed, I imagine that would have given you quite a different experience and the opportunity to really use the tools that you've both learnt in your training to make it more of a rite of passage, the spiritual transition. Do want to talk about that? How you see that as the rite of passage?
In general, I think death as a rite of passage is largely underestimated in our culture. Well, Western culture, there's plenty of cultures around the world who do it beautifully and have lots of ritual and shared understanding, a community approach to death that supports everybody. it's sort of like you're immersed in this culture of, ‘this is how things are’, and this is what we do when someone's sick or dying. This is how we approach death. This is what we do. And so the whole culture supports somebody. That's not to say that everybody manages it well, but when you're immersed in a culture that does have a standard sort of healthy, relatively healthy approach to it, then the person gets swept along and they have an opportunity to go through those rituals and to experience that, whatever they're going through, in a communal way. I think for Western culture, we've pushed that aside, put death into the shadows and pretend that it's not going to happen.and that when it does happen it's an absolute tragedy and that it should never have happened and you know everybody's just so overwhelmed by the sadness of it all that we miss all the beautiful things that can happen along the way. I think that for me that was that was what was so rewarding, to walk that road with Bill. Largely he was very open about what was going on and we had a chance to really do it well. I think his death was as good as I could make it, and that was such an incredibly rewarding experience for me. I felt euphoric at the end of it because I know that he had told me what he wanted and I was able to give it to him. So that, I know, because there's a lot of people who say, that is the kind of death I want, and then for whatever reason, it all falls down and they can't get that. But I had the resources and the knowledge and the skills and the people around me to actually make it all happen.
Thank you for sharing that.
I'll just say following on from that, I think when we deny death, we are closing ourselves off to the fullness of life and the things that life can offer us.
Nic, do you want to add something to that? Just putting you under the pump right there.
Yeah, just think my role as a mental health coach or a counselor, it kind of goes hand in hand with the death as well and people's perception on death. Because if you're living in fear or if you're fearful of death, you're living in fear. So you're living, in a box really. You're not living the fullest life that you can live, living in fear of death. So by embracing death and realising that it's part of the circle of life, you really get out there and live to the fullest. Yeah. So does that make sense to you?
Yeah, it does. I guess, I guess there's no wasting time when you know that you're on a timeline.
That's it. Yeah. We're here for a limited amount of time. Yeah. And some people have their timeline, you know, told to you, you know, you've got a life limiting condition and it's a possibility of six to eight months or whatever it is. Or we just don't know what time, when we're going to be popped off the planet, when it's time to go. So, so by living life to the fullest and embracing every day in the present, is really living to the best of your abilities. So knowing that you're going to die and that you want a really good life is living now. So I think, you know, I think having that philosophy is a good way to go, a good way to live. and yeah, so that's my thoughts on that.
Now you guys run some end of life death cafes. Now, what does that mean? And what do you find when you run those? Because actually, what I'm really curious about is what are the big fears? What are the big things that you come across in your work with the community and your clients, patients, depending on the scenario?
Well, people who come to death cafes are just inquisitive. They just want to talk and they just and sometimes their family don't want to talk at all. And they really want to know what they can do to make things easier. They want to explore different possibilities. They want, you know, they might have a life limiting condition. I've had some people there, a partnership, and they never opened up to each other about what they wanted when one was dying. I just was the facilitator. I just gave them space to be able to talk together on what he wanted and what, you know, at the end of his life, how he would like to live it. On the other hand, we've had other people that really want to get into the spiritual side of things and expected that Rose and I wouldn't, you know, be into that business. But that was really funny because we shocked the life out of them. Eeveryone comes with different thoughts around death. At the last Death Cafe, we had 12 people there, and we had a really lovely lady come along who does probate - and I know this is not the spiritual side of things, but once that discussion was opened, everyone started to talk about the death of their mother or their relative or whatever and how that journey went for them. So there's a lot of sharing and there's a lot of compassion and there's a lot of exploration. So we talk about many different topics and nothing is off the table and it's all done with respect and compassion and valuing each person. So it's really good. I really love holding them. We hold them monthly and it's lots of fun. I guess that conversation about probate, brings up all the things, the money stuff, how it can all go messy and it's such an indication, isn't it, that if you haven't got things sorted, you're leaving a mess for your family - a massive, mess. And really, excuse my expression, but a big shit fight, because some people are just all about the money. It's not about the person that's dying. And how you know, you can support them through their journey of death. Instead, it's about, you know, when are they going to die? How much will we get?
It's more about the heart than the material objects and you can't take it with you. . So it's quite interesting. Yeah. Leaving that mess behind for your family is, it's very traumatic. So many times I speak to people, I do a bit of bereavement follow-up at work and the number of times I've rung them three months or six months down the track and they're still dealing with all the admin, still dealing with the will and trying to figure out who gets what and just the complex situations that people find themselves in because it wasn't sorted out before they died. That interferes with their grief process and really it complicates it because the angst and stress that all this is bringing gets tied into the loss of that person. And so then those two things are married up and they can't just grieve for the person that they lost, the love that they had for them or whatever it was. It's just this big ball of mess. it's, I just wish people would think about that before they go, like just have a thought about who, and what you're leaving behind for the people that you love or that you care for.
Yeah. It takes a lot of maturity, doesn't it, to actually address this whole thing about the transience of our lives. We've got to own ourselves to do that. How do you find that in your experience?
It's a lot. We're still living in a death denying society on the whole. There was a tool created by a wonderful Australian woman called Kerry Noonan called the Death Literacy Index…she found that actually people do want to talk about death. It's not this thing that nobody wants to talk about, but it's our culture that has set it up as though nobody wants to talk about it. And so everyone is sitting there thinking, I wish I could talk about this stuff, but I know no one around me wants to and everyone's thinking that. So when we have a death cafe, it brings people out of the woodwork and they finally get a chance to talk and then you can't shut them up. That's right. You just can't. But there's also, you know, they say that, you know, cancer isn't discriminatory, but that's not actually true. The social determinants of health would indicate that it's disproportionately found more commonly in the lower socioeconomic, and the less educated, for want of a better word. Generally then there's not a lot of literacy around health and death topics. People don't have a lot of language to be able to talk about this sort of stuff and that's the sad thing I find a lot of the time. It's great when you find somebody who is willing to openly talk about this, but it's not very common amongst our cohort, our patient cohort, which can be frustrating…
And people die as the way they live. And that's the one thing that I've certainly learned in the last few years working at the Cold Face at Palliative Care is that you can't, you're not going to all of a sudden become this person who's, you know, this sage that sits there in the corner uttering incredible words of wisdom to all the people they leave behind. It's just, you just, just be yourself no matter whether you're living or dying or approaching end of life.
It's also a time of I've done some spiritual care for the dying at the University of Notre Dame. And I've also done a Buddhist course on spiritual care for the dying as well. And it's also a time of reflection and being able to
what would the word be? Get out your fears, you know, and talk about them. You know, it depends on your religious values as well. I can remember there was a doctor who's an Australian doctor who was, he was speaking and he had a list of, he had a selection of slide, photos or slides of videos of people, how they approach their death.
And there was one lady who was in hospital who was in her seventies, who was really angry and the medication wasn't working and nothing was working for her. She was really lashing out at all the nurses and the nurses didn't have time to talk to her. So the doctor came in and talked to her and he asked her what's wrong. And after a couple of sessions, he worked out that she'd had an abortion in her early twenties to a man who was already married with children and she'd never told anybody. So she had this fear of dying because God was going to punish her. once she got that and you could see the weeks how they were progressing and each week he would talk to her about it and finally she let it all out and she'd never had children. She was married. She never told her husband and never told anybody about this. And so she let it out and he said, you know, if your God is the God of love, why are you so scared? So once she came to that conclusion that God is the God of love …and her medication started to work for her pain. She was a lot happier. The day before she died, she was sitting down in the hospital lounge with a glass of wine with a big smile on her face. Like that, you know, that completely changed her journey of death because she got those things off her chest and had understanding that, you know, her religious or her spiritual views weren't really what, you know, it was happening all in her head, that there was a God of love and that he would forgive her. So that made such a difference to her death by, you know, talking about it and getting those things off her chest…
I know that you do a play, you guys have a play, is that right? Yeah. Can you just speak to that for little bit so that people have a bit of a handle on that?
Yeah, we haven't done it for a little while. We got the rights to it in 2019 and put it on for the first time in 2019, about three weeks before Bill died. I I got all that at the same time and it's basically a one-woman play about advanced care planning. There's two characters in there. One of them is the woman herself who's ended up in ICU when she told her children expressly that that's not what she wanted. And she was approaching death quite sort of candidly. But her children sort of took over and decided to call the ambulance. And of course, it was written by an American. So she ends up in ICU for months on end, being kept alive by machines. And so she steps outside of her body and talks to the audience and says, you know, what am I doing here? And then she talks about her family and a fractured sort of difficult relationship she has with her daughter-in-law. And then the next part is the daughter-in-law that comes along and tells her own story. And then she comes to a revelation and decides to advocate for her mother-in-law and take her home. so that's how it finishes. Now that I've given away the plot, you probably won't need to come and see it but it's such a beautiful play and you're on a roller coaster. Yeah, I did it with on my own to begin with, but I've enlisted the help of a niece - the theatrical talent runs through my family very deep and wide. My niece has now come on board as the daughter-in-law…
I think both of us could just talk about this stuff all day. Of course we could, it’s our favourite subject, we're the deathy girls.
All right ladies look thank you so much I really appreciate your time and we will definitely speak again. you Karen. for having us. Now you've got a website your website is what's endstagematters.com
Perfect. So if anyone wants to know more, you can go and check Nick and Rose out there. All right. Thanks a bunch.
www.endstagematters.com.au
