The first thing I’d love you to do, Carol, is give us some background – so, tell us a bit about the Death Café movement, where it came from, what it’s essentially about.
Okay. Jon Underwood, he’s in London*, he decided he would set up the website, www.deathcafe.com. Jon could see the need for people to talk about death, and have conversations about end-of-life – well, living, death and dying, really. He thought it’s always great to have food and a cuppa – people relax, feel comfortable, and generally speaking they feel more relaxed talking, about anything really. So that was where the café idea came from. And death, of course, is a word that often isn’t spoken about because people don’t like the word death.
He set this up in 2011. And we started our Death Café in 2013 – it was Mothers’ Day. When I set it up via the website – because that’s how you go about it – I think there were about 1000 Death Cafés in the world, and now (2015) it’s around 2500 world-wide. So it’s exciting to see the growth.
Yes. So tell us what you do. How often do you meet?
We meet every second Sunday of the month. The meeting is scheduled for an hour and a half. We open the space; I always light a candle. I never know who’s going to show up. I love it. There is no agenda, however I do bring along Advance Care Plan documents that attendees can take away. These are also available on the internet1.
So it’s like any situation where people turn up to a cafe! You don’t know who’s going to be there.
Precisely. A facebook page was setup, business cards and flyers were made up and left at Garnet Station Café where the Death Café was held.
There is no set agenda for the meeting. I introduce myself, then we go around the room for the guests to introduce themselves. We then go through the guidelines which come from the Death Café website. These speak about privacy amongst ourselves – that what’s discussed within the room stays there – and about being respectful of the amount of time you’re talking in relation to others in the group. We don’t offer counseling, just hold the space for each person. People can share what’s going on in their lives or the questions they have about end-of-life.
So it’s a time for conversation.
Yes, which loosens people to feel comfortable to open up. It’s incredible seeing the transformation in people.
Can you give us an example? And I’m aware that I don’t want you to break confidentiality. So can you speak in general terms, or else check out with the people you speak of if they are happy for their stories to be mentioned.
Sure. One lady came along because she wasn’t able to talk with her Mum about the end of her mother’s life and what she wanted. She was the only daughter, and there was no-one else in the family. She just couldn’t go there with her mother. They did have a bit of a struggle in their relationship anyway. But through coming along – I think it was the second time she came – she talked about this in different ways, and we just shared ideas in which she could perhaps go about it. We weren’t solution-finding – we were just having an open discussion. After those conversations she told us she could actually approach it, and that she would like to be involved in the process after her Mum died, being with her body etc. She was realising the benefits of this in terms of grief, and being close to her Mum in those final days, sharing the ups and downs. We all know how meaningful that relationship can be with our parents. I just saw a softening in her, which was lovely to see. I see it in many different people and situations. People will often come to me afterwards and say, “That was so good. I feel so much better” – those sorts of comments. And then they want to have similar conversations with their families, their loved ones. And maybe we talk about Advance Directives. I always have Advanced Care Planning information available as well.
So, I wonder what the Death Café provides that enables people to then go away and talk with their mother or their family or a friend. What do you think it is?
What it provides is, from the comments I’ve had from people, that it’s a warm-hearted group that we have. My whole intention is that the place be warm-hearted and friendly and a place where people feel comfortable to talk. And as a facilitator, the whole time when I’m holding the space I endeavour to take it back to that friendliness, and it works. People feel it. It’s like when you go to a new job – if the space is made comfortable for you then you learn the job more quickly, you’re happier, and all of those things. It’s exactly the same with the Death Café.
And even the name of the movement, Death Café, is welcoming, isn’t it?
Well not everyone thinks that. I thought it just rolls off your tongue. But when we first started, and I had to push the button on Facebook when I set up the page, I thought, “Oh my goodness me. What’s going to happen here?” and then it started to flow – I put posts up, made flyers, made business cards, it becomes… normal. It takes the sting out of the word.
And to me, somehow putting the word café alongside the word death already starts to take the sting out of it.
It absolutely does. And what I’m finding is that people will ring me, or they’ll send an email, and say do you think I can come along. At the meeting I’ve had a 90-year-old couple come along, a lady at the end of life, a whole raft of people from different situations, and they share that.
So you might get people who are dying themselves (well, we’re all dying, but it’s a bit more up-front for some people) or people who are perhaps coping with someone who is dying but not able to talk about it easily with them?
Yes, or someone living on their own, with a long-term illness – it’s difficult for them. So the more we talk about it, the more people can be in the space with it. And I believe it helps with the fear. That’s what you want to eliminate, and enjoy that journey.
I know you work with death and dying, Carol, but I gather it’s possible to facilitate a Death Café regardless. In fact, I think I read on the website information that a facilitator needs to leave their profession at the door – just be there with everybody else – a whole group, all of whom are dying!
I don’t think you have to have that background at all.
No, just a willingness to talk about death.
And to not have an opinion.
Or have an opinion but be open to everyone else’s opinion, I suppose.
To not have an agenda. Like euthanasia has cropped up, and it’s not something that’s on my radar. However, we’ve had conversations and it’s great, because for people who are thinking, “Oh, if I get memory loss I just don’t want to go there”, maybe they discover that it’s really a fear around how they’ll be looked after? Through being in the situation with my Mum, that’s what I understand, too. And if you’ve got cancer it’s the pain that is often the concern.
So you’ve been able to see these themes, if you like, because you’ve got a group of people discussing whatever’s on top for them.
Yes, but also by having the conversation, a lot of things bubble to the surface. We never know what’s going to happen in regard to the conversation.
That’s interesting. So a person may come with one piece in mind – like the woman who wanted to be able to speak with her mother – but of course, get people chatting and you’ve got other things that might be quite under the surface in the same person, that bubble up for looking at. That’s brilliant.
It’s a process, because people are opening up. Like the elderly couple who talked about their relationship. He was so concerned about when he dies, would his wife be okay. He expressed this. He was a bomber pilot, so he’s been close to death many times and wasn’t fazed about dying. That wasn’t his fear; his fear was for his wife. And she was able to reassure him that it was okay.
You hold the Death Café once a month. Is that a pattern that you think works?
Yes. In my experience, if you have it every month – the second Sunday afternoon, the first Thursday evening, whatever suits – people know it’s on. They might not come for a few weeks, but they know. You can use the deathcafe.com website to advertise, so people can check it out there.
What would your vision for the future be in terms of Death Cafés in New Zealand, Carol? What would you like to see?
I’d like to see everyone understand about dying. One of my desires or intentions deep inside me is that I want my son to know that it’s okay when I die. And for his own death – I want him to understand more about dying, not just, “I want to be buried”… I want him to know about the process. And that’s my intention for the end of life – it’s the process. I don’t want him to miss out on understanding that. I don’t want him to miss out on the mystery of dying.
Yes, that grieves me, too, Carol, when I see people fight so hard to stay alive because that’s the culture we’re in. I see Western culture as very directed to staying alive, and it can mean, I think, that people miss their death, and I think that’s a tragedy.
The conversations at the Death Café can lead into these things. Some people have been coming for a year, 18 months even, not every time, but over that time. And that says to me that people want more. But many people don’t think about it.
So you’d like everybody to have the opportunity to be able to talk about, and really understand, the process of dying?
I’d like it to be the norm to talk about it – that you don’t have to go and find a book about it because it’s just talked about. And we’d talk about it with children. Children are so receptive; they just get it. And a lot of elderly people do too.
And I guess the more we bring death back home, as it were – dying and after death – the more it will become familiar territory.
I feel that’s the movement, the times, we’re in. We’re just holding each other’s hands to go back home, teaching each other the natural ways to do things, so that when someone dies their loved ones know what to do, or they know who to call on to assist them. They can take the person home, and wash them, and spend time with them and talk to them.
Let’s close this piece in regard to Death Cafés, Carol, because we’ve segued into a different area.
I know it’s important for facilitators to have no particular agenda, but you have a particular passion, and also background, inasmuch as you are a death doula, a companion for the dying. And you’ve also done some learning about how to look after the body at home, that sort of thing. Is that right?
We call it natural death care.
So there are two trainings you’ve done – the death doula and the natural death care. Could you tell us about both of these? There may be people who would appreciate knowing where to go to explore these things further if they find they’re drawn to them.
I find it hard to talk about training, because it’s innately within me; it’s just been there forever.
Yes, I think it’s in many women especially.
Yes, it’s like everything in life. There are some things that are innately there, and not others. The difference is one of degree. I would say that if you looked at my soul CV you’d see many lifetimes of this. And everyone has their own way of doing things.
Going back to what you asked me about with the training, I already had this going on for me, but I felt I needed to do some training. It annoys the life out of me that we have to do training to show we’ve done something. That’s why I don’t really want to talk about it.
I’m not comfortable. A lot of what I do just comes naturally. I can’t do things if they don’t come naturally.
So you felt you had to do some sort of training, but actually you didn’t need to.
That’s right. And I think that is a very important piece. When you think in more traditional societies, and in our own society not so many generations ago, there would have been some particular women in the village who were more tuned into working with death, and quite likely with birth as well, but many women would have just taken their part.
Perhaps for them it was the most natural thing in the world for them to be involved with.
And others would have assisted. And I think we’re tapping into these things now; we’re tapping into the best of ourselves. So, yes, I did my ‘Accompanying the Dying’ with Deanna, but…
Maybe some of us had or have to do some training in order to break the hard ground – to initiate what for our society is rather new.
Maybe, and with the Natural Death Care with Claire Turnham, it was just so natural for me to do that. I adored it. And I’m all set to go. When somebody rings me and wants me there, I’m ready. Somebody has rung me and said he’s near the end of his life, so I’ve said just give me a call and I’ll be there to assist in whatever way you want me to.
So essentially you’ll go to their home and work alongside family to bathe and dress the body – that sort of thing?
Just assist with some of the things they’re not sure of, so they can enjoy this special time. I just know how much it’s going to mean to them when they look back.
Yes. I helped a friend of mine look after an elderly friend of hers when he was dying. A day or two before he died, I said to his wife that I thought it might be nice for the three of us – after just leaving his body undisturbed for a while – to wash him and put some nice cream on his body, and then get him dressed. She said, “Oh no, I don’t think so”. But when the time came, she did choose to be part of it. She became utterly and completely involved and just loved it. She said she wouldn’t have traded the opportunity for anything. It was a real last contact with her husband and gift to him, she felt.
And that possibility is in all of us. It does take a village to support. We can get called out at any time and we need each other. It just makes it so much easier. Somebody might be putting the kettle on… These are the things I want to see. Not all of us have got a lot of family, so if we know the community can do it, that feels so good – to know near the end of life that there are people who will come in and assist with loving arms. And if people are dying in hospital or a rest home, then we need to create a lovely space where people can gather.
Yes, I was thinking about that. There are times when the rest home or hospital are just going to be where death happens, but it’s about thinking ahead about how we can make the space feel warm and open and gentle, and to have asked what the person who is dying would best like around them, and how we can best serve them.
It’s about empowering people to do it.
So this is a real community thing you’re talking about now, isn’t it? It’s about developing these conversations beyond the Death Café and into community, so that we know each other, we know whom to call on for different things – we’ve got that sense of support around us.
I think the Death Café is going beyond its original intention now. However, it’s a great umbrella to be under. The name is becoming familiar. Whereas having all different sorts of names gets confusing.
And we’re a mobile society, so it’s good to have things that are familiar, wherever we are.
So is your sense that Death Cafés are becoming more like the beginnings of a community impulse around caring for each other at the end of life?
All the Meet-up groups are a way of bringing people together – things are already happening. Sometimes we don’t realise something’s happening, but it is. It’s like your Tango group; you can have a Tango Meet-up group for people who have always wanted to do the Tango. They don’t want to think it has to be perfect; they just want to have a go. Put a red rose and have a go!
That’s what living’s about, isn’t it? Just having a go at something and not thinking it has to be perfect. You know when you listen to Stephen Jenkinson2 he says that as a society we think we have to do everything right. Having to have certificates is part of this. And now what we’re saying is that innately within us is what we’re good at. There is a place for training, but we need to begin with what’s innately in us.
Thank you so much, Carol. As so often happens in these interviews, or conversations, we find ourselves somewhere even more interesting than the original intention!
*Jon Underwood died suddenly in 2017 at the age of 44. In the words of his wife, shortly after his death, “… through his work helping people come to terms with the idea of death, Jon was uniquely and unusually aware that life is short and appreciated his life fully, reflecting on this through daily practice … He lived every day reflecting very consciously on the fact that none of us know how long we have and focused completely on being present in, and making the most of every minute.”
- https://www.hqsc.govt.nz/our-programmes/advance-care-planning/ (created for New Zealanders, but a great resource regardless of where you live. Just check out if any particulars are required in your locality.)
- 2. Jenkinson, Stephen Die Wise – a manifesto for sanity and soul North Atlantic Books, Berkeley, California (2015)