Podcast, Season 1 -

Jessie Williams – Reclaiming the End of Life

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Jessie Williams is the CEO of the Groundswell Project, a not-for-profit organisation changing the conversation around death, dying and the end of life. They have programs focused on education, providing resources, art in palliative care and most interestingly the creation of compassionate communities.

As you’ll hear in this episode compassionate communities are about creating supportive environments around people who are dying and their loved ones.

In this conversation Jessie also talks about reclaiming the end of life as a positive experience, designing your own funerals and that most people are more comfortable talking about death than we’re led to believe.

Transcript

Ash de Neef: Thank you so much for joining us on the podcast today Jessie. Can we start with a bit about yourself and your story?

Jessie Williams: Yeah, so I’m a 48 year old woman, and when I was in my early thirties, like many typical women, I was expecting my first baby.
I had a job. I was a trainer in the community services, and I shared my pregnancy journey with my workmates and my family and my friends as all people do. And as I recall, I went on maternity leave and my colleagues had a party for me and we gathered in the kitchen and they had all brought something from their home.
And it was such a surprising, lovely way of celebrating my maternity leave because usually, you get a big card that you can’t put anywhere and are you usually, you know, a useless gift that you can’t use. So the fact that they’d put so much thought into it with was really quite extraordinary.
And so I left my workplace and I went home and I waited and waited and I waited and my baby was overdue. And then I gave birth and my baby died, and this was not something that I expected – and it was certainly not something that anyone in my life expected. And,as we went through those first few days of shock and grief in the hospital, I had this experience, which I still to this day, so many years later he was so grateful for, and that is a social worker came up to me and said that I could take my baby home.
And it was such a lovely surprise that it kind of crashed through this extraordinary grief that we were all in. And I actually felt some excitement. I actually felt something like an energy kind of a hope in that we could move through this experience and have, I guess a new experience. So we took we took our son’s body home.
His name was Monty and we had them there for three days and my family and friends came to meet him, and my work colleagues came to meet him and then we had a funeral and then he was cremated. And, you know, years later I would have conversations with people that were in my life at that time.
And, and I asked them what that experience was like for them. And they said it was profound. It was extraordinary. And it was something that whilst very sad that they felt very honoured to be a part of. And I guess I looked back on that experience as a growth experience as something that there was a, you know, there was something that we learned from that that was extraordinary.
And I didn’t want that learning to, to be lost. Um, and it was around that time that I discovered the Groundswell Project and I joined the board.

Ash de Neef: Wow. That’s quite a start to the interview there. What do you think being able to bring Monty home did? How did that change your grieving process?

Jessie Williams: Well, what it did was it, it cracked through the shock.
So shock is like you’re immobile, you know, you’re stunned, you’re stuck. And being able to take action to plan the drive, to think about where are we going to put him to think about, “Oh, we need beer and champagne and soup. And we need things in our home because people are going to come”. To be visited by a funeral provider and to have a conversation around what flowers we wanted on the casket.
I mean, there were all these things, some decisions were hard to make, but most decisions were fairly easy because they were just natural. They were about our friends and family. And what was, they were reflective of what was important to us. So, you know, we, we were in motion, we were in movement.
And grief is very stirring and you need to do stuff with it. You know, being stuck is not a very happy place to be, but being in a space where you can laugh and cry and do a lot of laughing and crying, a lot of up and down – that’s a full hearted place. And you know, when we see people in mourning, when we see people in funerals and they’re often laughing and crying, right.
That’s kind of the reality of what grief is like.

Ash de Neef: What was it about the Groundswell Project? You said you had such an emotional moment that you didn’t want to let slip away from you. Why did the groundswell project leap out at you as something that you should be?

Jessie Williams: Yeah, so the Groundswell Project, the idea of it when it was formed by our founders 10 years ago was so extraordinary. It was this idea that if we create a groundswell of social change around death and dying and grief, and we see the reclaiming of death dying and grief as a social movement, then everyone can be a part of it.
And what I realised when I discovered, when I met Kerry Noonan, who was one of the founders, when I discovered this idea of the Groundswell Project, she helped me realise that what I did back then – which was invite people into my home, invite people to meet my son who had died – was that I was making it accessible for people, you know, I was allowing people to share in my grief and I was allowing community to gather.
And so I wanted to loan my story and experience just like hundreds of other people around Australia and around the world, loan their story and experience of how they’ve done their dying well and their grief well. And so I joined the board in the second year and now I’m the CEO. So we absolutely see ourselves as part of a social movement to reclaim dying.

Ash de Neef: Would you agree that some part of it is changing the narrative around death and end of life?

Jessie Williams: Yeah. I guess one needs to consider what is the narrative, you know, if we want to change it. And, and I suppose that the dominant narrative around death and dying is that, people avoid it. It’s hard. Um, it is hard.
But actually 75% of Australians say that they don’t avoid the topic of death. And they just need to be asked about it. Most people when asked will have an opinion about what’s important to them. So I think what we’d like to see is a fundamental shift in the reframing of dying as a topic that is avoided.
It’s actually not. We do have a core belief at groundswell, which is that people have capacity to do dying well, but they do need to be invited into that conversation in a different way.

Ash de Neef: And, and why is this? Why is it so important that we change that the way people relate to this conversation about dying?

Jessie Williams: Well, 10 out of 10 of us are going to die at some point in our lives, right? We’re going to, I think the average person has to organise two funerals in their lifetime for their loved ones. These are just life events, just like any other life event. And we want to do it well, it’s this extraordinary time in our life where we gather where we feel love.
Where, you know, maybe some skeletons come out of the closet, I mean you’ve never felt more alive when you’ve had to deal with this sort of an issue. So, you know, let’s talk about it and deal with it when we’re well, not when you know, the proverbial has hit the fan and we’re overwhelmed and we don’t know what our choices are.
I think one of the crappiest regrets you can have is. You know, when you organise something like a funeral and you look back on it and you go, I would’ve done it differently. Had I had more time or had I not been in so much overwhelm.

Ash de Neef: Yeah. Now you said that the Groundswell Project is a community organisation.
What actual work does the Groundswell Project do? What sort of programs do you have?

Jessie Williams: Yeah So look, we have capacity building programs and education programs. So we work with this concept called death literacy. And death literacy is putting, you know, your knowledge into action. So when we know about the end of life system, by that, I mean, palliative care and so forth, and we know what services are available in our community.
When we feel confident to talk about death and dying, when we feel confident to care for someone who’s dying. That all becomes part of our death literacy. So we run a course called 10 things to know before you go, which is a death literacy workshop. People come to talk about their values.
They learn about the forms that you’ve got to fill out, but most importantly, they’re developing their muscles. Around, um, having a conversation with people that matter, because if we want to have a particular kind of death and most people would say that they want their pets with them, they want the people who matter to them.
They want to be in a comfortable environment. And one that they can recognise, 70% of Australians say they want to die at home. You know, if those things are true, we need to be able to talk to people in our life because we need those people to help us make it happen. Right. Because chances are our health is not going to be what it was.
So come to the Groundswell Project, do the 10 things to know before you go course and you will leave feeling more equipped to have those conversations. We also work with the aged care sector in the healthcare sector. We like to think of ourselves as having one foot in those sectors and one foot in the community.
So we work with this concept called compassionate communities, which is social networks in neighbourhoods or in any type of community of people that come together and help someone die or help someone grieve. So there are certain strategies you can put in place to encourage that grassroots mobilisation, we’ve done research and we’ve developed a toolkit on how to support communities to lead the charge in that.
That’s just a couple of things that we do.

Ash de Neef: Yeah. I’d like to dig into the compassionate communities. Can you talk about some of the tools and the resources that allow communities to come together around this?

Jessie Williams: Well, yeah, I mean the first one is education. So when people gather to learn. So it’s much like the other book end of life, having a baby.
So when new mums come together, they have a mothers group. You go down to your local community health center and you sit with other mothers and you talk about breastfeeding. It’s exactly the same when it comes to death literacy. So that’s, that’s one tool is, is those education programs. The other tool is, is partnering with health services and aged care providers.
So, you know, one of the projects that we worked with with Southern Cross Care in New South Wales and ACT was we called it the 10 K model k being short for kilometre. We wondered, what would it be like if we worked with a residential care facility and we had a community development worker can help connect all the people that lived within a 10 kilometre radius of this residential care home with all the people that worked and lived in that place.
Because of course it’s someone’s home and it’s also someone’s workplace right? We developed some arts programs. We developed some intergenerational programs. So some high school kids from the local schools would come in and teach the residents how to use iPads and connect with their family members back in Europe, you know, just the simplest things made such a difference.
So what we found was, we did this project for three years and there were some challenges and barriers around how do we do this within a residential care facility that is designed for good care and the medical model? How do we build a social model within that kind of task orientated space?
But over time, we discovered that we, we did make a difference on the wellbeing of the residents there because we supported the development of those social networks. So partnerships is another key element of building compassionate communities and certainly, policies and other things that help with the more top down approach.
One of the things we found too is. When we’re talking about empowering citizens to take action, we need to look at power and we need to look at how we share power. And by that, I mean the health services and the aged care providers who have a job to do sometimes they’re so good at their job that they forget to have that kind of mindset, which is.
Most citizens know what to do when it comes to caring for each other and many of them will have had a care experience, they would have cared for their husband or their wife who died, which is why they want to get involved in compassionate communities. So it’s about recognising that sort of untapped capacity and really just giving people an excuse and permission and support to gather and do things.

Ash de Neef: Yeah, that’s fantastic. It echoes conversation we’re having a lot on the podcast about, when you’re talking about aged care, trying to provide a social care as well and social integration and in an environment that as you said, can often be very task oriented. I really like what you’re saying about it becomes part of the community.
It’s not just a thing that happens behind closed doors. It comes out into the open and people can have frank discussions about it. Do you feel like you had a kind of impromptu, compassionate community at your son’s funeral?

Jessie Williams: Hmm, I did. What a lovely question. Thank you. Or a suggestion even. Yeah. Community is one of these words, it always requires a definition or something because we all have a different idea of it. I suppose the, the idea of community for Groundswell is you can be a part of five to 10 different communities. It’s really about where people gather and you can have a community of identity, which is single moms have a community of identity.
You can have a community at work, which has, I spend so much time with my colleagues, I feel like they’re my friends actually. And you can have a community where you live, which is your neighbours. So for me, you know, having my neighbours come over, having my work colleagues come over, having my family come over and my friends, they were kind of multiple communities connecting, but there were people in, in an orbit around my partner and I, and our son.
And they could choose to come and go. There was no kind of pressure there. And I think any natural social network is one where you feel like you can come in and out of, you know? But it’s, um, it was a time and place that is very special to all the people that were there. And as I say, they, they all took something from it.
And this idea of death literacy is that the fundamental concept does that we learn through experience. So they would have learned something about their own dying and something about the dying of their parents or their grandparents, or their loved ones by just being a witness to that moment in time in my life.
And, if we recognise that that’s how we learn about how do we deal with mortality and how do we plan and, and all those sorts of things, then I would hope that workplaces would say, sure, you can take a week off to do that. We’re not going to put any pressure on you or, you know, we, we hope that those spaces are supported and opened up more.

Ash de Neef: I do want to touch on death literacy in a second, but before we do, if you did have a compassionate community of your own or compassionate communities that came around you, is does it just take one person making a step to start this sort of thing?

Jessie Williams: Oh, that’s a really good question. Like when we start in a geographic location, so we’ve worked with nine communities over two years – and this was the research that we did on what makes for a compassionate community. We put a call out to all the people that, you know, sign up to our newsletter, who would like to be a part of an action group. We had 34 groups that had already formed some of those were individuals, but they had an idea of who they would work with.
We had 34 groups across the country saying, “yes please we’ll do it”. And we know that there’s many more than that. And so we only chose eight because that’s what we had the funding to do. But, um, But we learned through that experience is, you know, a group can be three people. It can be 200. So it’s, it really, there seems to be a bit of a magic number and the number of 16 in terms of a care network.
So 16 people to help one person have a positive dying experience, usually outside of an institution. But if it’s one person it’s one passionate community provocateur and they will gather their people. Or it’s a small group of women or men like in a men’s shed, you know, who already know each other who will invite just one or two more people to join them.
So it’s, you know, it’s just one of these things that’s extremely diverse, I think. And it really depends on urban, regional, rural, or those sorts of settings as well. But compassionate communities as as a title for what’s happening or a name for what’s happening. It’s been going on in, primarily in Western democracies for the last 10 to 15 years as a formal kind of social movement that’s recognisable.
And there’s a lot of great examples in the UK with compassionate communities there too.

Ash de Neef: So professor Alan Kellehear had mentioned in a video, I think he was addressing a community in Bunbury in Western Australia. And he said that “people who are dying spend only 5% of their time with healthcare professionals and the rest of the time with their family, their friends and their community”

Jessie Williams: Or on their own.

Ash de Neef: Or on their own yeah, exactly. And I think that’s a really important realisation in acknowledging that we need communities who are able to support people who are approaching the end of their life.

Jessie Williams: Absolutely. And in the broader picture, we grieve as we live, you know, and sometimes we die as we live. And by that, I mean our personalities don’t change, we are who we are right through to the end.
And so if we have relationships and social networks and contacts, when we’re, well, those will probably shrink if we’re unwell, but we tend to have some, we tend to have them remain. But if we’re lonely and isolated, when we’re well, we’re obviously going to be lonely and isolated when we’re unwell and that’s the time where we don’t want to be lonely in an isolated cause we need people.
Which is why we talk about the importance of working upstream. That’s why we’re a community development organisation is why we’re looking at how do we build capacity when we’re well, so that we’re okay and we’re resilient. And I think when we’ve worked with the aged care sector and we’ve recognised that social networks shrink as we age.
I mean, there’s a bit of a wicked problem there isn’t there, especially if you move into a residential care facility and no one says to you, “have you told your friends that you’re here?” “Do you want a postcard to send them to say, this is your new address?” We don’t tend to do that. We’ll talk about, “have you got an advanced care directive?”
We talk about what are your preferences, with food because we understand person-centered care is really important, but what about network centered care? What about recognising this person’s social network and actually doing things to help enhance it over time? That’s our passion in terms of working with aged care environments.
The 95% rule is, it’s a good one. It helps us really kind of focus where we should be putting our energy. Doesn’t it?

Ash de Neef: Absolutely. And ducking back to death literacy, it seems like there’s an assumption underpinning death literacy that if people knew or understood more about death and end of life, more conversations would be had, or there’d be easier to have, would you agree with that?

Jessie Williams: Well you have choices. You have choices in aged care, you have choices in dying, and yet we don’t resource how people will know what those choices are. If you don’t know what the choices are, do you really have choice? I’m not sure. The element of death literacy around, you know, factual knowledge is incredibly important.
One of the questions that comes up in our work workshop all the time is things around. What is the difference between something that’s in law and something that’s just the policy?Because when you know those differences, then you can go, “Oh, well, actually I would like to have a funeral with a casket without the lid on am I allowed to do that?”
“Can I pick my grandma up and put her in the back of the you?” Yes, you can. You do need to put the lid on? That’s really important. In New South Wales, you can have a body at home for five days. Now, I didn’t know that, but the social worker said, “Jess, you can have Monty at home for five days. If you want to.”
Now, for me, three days was enough and three days often seems to be enough for people. But boy, that was really empowering to know that really empowering to know that. So yeah, we to kind of democratise, I guess, some of this information and it’s not just – and then the other element of it is that it relieves the burden on now health and aged care systems when citizens know this.
Because they’ve got enough to do. The aged care sector has got enough to do. And the health care sector has got enough to do so. When the community has knowledge, when citizens have knowledge, we know what to ask for. We carry the load ourselves. We share the load with our good health care in aged care providers and we have better wellbeing outcomes for all.
So it’s a bit of a win-win I think.

Ash de Neef: Absolutely. And you mentioned the, the example of choosing your aged care facility, for example, and choosing that before the time comes that you need to move into one. I think given the climate that we’re seeing at the moment, we’re now in September, 2020, and there is an increased scrutiny on the standards of care and aged care facilities, maybe having people examine options well before they need to move in, will change the conversation around aged care as well, and might move to allow people to re-examine what is acceptable in the, in those facilities?

Jessie Williams: Yeah, we’re certainly seeing a greater transparency aren’t we with the ABC and the work that they did this year as well. When we started the residential care project, we would often kind of talk about it in the sense of, we want to see what we can do to transform a place where people would say, “I’d never want to go there when I’m old” to a place that “I’m looking forward to going there, because it’s a place of community.”
It’s because it’s a place of life. That’s because it’s a place where I can see my own sense of agency. My own sense of self, will continue when I’m there. And so we certainly know that all of us will age as though all of us will die. And we want our ageing years to be ones that we’ve, you know, we know that we’ve earned the right to age and we’re lucky to be ageing.
So we certainly want them to be reflective of what’s important to us. I always come back to community and choice and, supported living and supportive residential care, I can’t imagine that ever not being a need in Australia you know? But to what extent are we managing these places in accordance with our social determinants of health and looking at the strengths of our family and friends and how we can maintain their social networks?
I think that’s an important frontier that we need to keep exploring over the next 10 years.

Ash de Neef: Yeah absolutely. You posed the question, which seems maybe to be one of the most important questions we can ask going forward, which is “how do we turn aged care from being a reality that we don’t want to face into something that’s exciting at the end of our lives?”. You mentioned the transforming care and one program that the Groundswell Project has working with people undergoing palliative care is a creative legacy program.
Can you talk about that a bit?

Jessie Williams: Yeah, look, the creative legacy program is our baby it’s. We’re so proud of it. We’re so proud of it. The concept is simple. Bring artists into the palliative care ward, where people are dying. Sit with the dying people and their family and friends who are visiting them, ask them questions about their life and then create a magnificent art piece.
And then present that art piece back to the dying person. Or if the dying person has died, give it to their family. And that piece is a legacy. So creative legacy has been going for three years now. We run it in partnership with Liverpool hospital in Southwest Sydney, and we’re amazingly able to run it through COVID 19.
So all the other kind of volunteer programs had to be canceled. And what we were able to do is be pivoted it to being on Skype. The artists will only go into the ward when, when the health conditions change. And so we now deliver it in a slightly different way, but yeah, the idea of creativity at the end of life is a really powerful one.
We certainly have the 95% rule, which is we have a lot of time to reflect. Artists have a unique view on the world. Yeah, we’re really proud of it. And we’d love to bring the creative legacy program to the aged care space as well. You know, I think the other thing that is really powerful about the idea is that the artists are in the area.
So we recruit the artists who live in that town. And all we do is we train them in how to be comfortable in the dying space, whether that’s an award or that’s in a residential care facility. And then through that, they are then allowed to bring their craft and their attentiveness and their heart to those conversations.

Ash de Neef: Wow. And what are some of the reactions that you’ve had from people receiving the artworks?

Jessie Williams: Oh just absolute gratitude. Often the families will donate and we’ll keep that money for the program the next year, so that we can offer sessions to other people who may not be able to afford it.
So just gratitude and generosity and a sense of. Of luckiness, like I’m lucky to be able to have this experience. And that goes for the artists as well. It’s a wellbeing program that for the staff, the patients, families, and the artists, they all get to share in the richness of the art-making journey.

Ash de Neef: Now, can we switch topics a little bit and what does, what does a more death literate society look like to you?

Jessie Williams: For me a death literate society is one where profound and beautiful dying experiences are shared and talked about more commonly. So just like talking about a great wedding that you went to we want to hear people talking about the great funeral that they went to.
We want to see more of it on social media. We want to see more of it in our, in all the ways that we get information and all the ways that we get stories. We want to hear and see more of those stories of, I did it the way that my mum wanted. I did it the way I wanted. Just like I mentioned earlier around, young moms gathering in breastfeeding support groups.
We want to see more of these local connection groups happening for people who’ve gone through the dying experience and who may be isolated. I remember one woman stood up in one of our town hall meetings ind one of the communities we were working with. And she said “the death of my husband was not hard for me cause he was unwell for a really long time.
It was when the palliative care team stopped visiting because he had died. That’s what I found hard.” So a death literate society would be a place where she would have a community group that she could go and actually share her story and then support others and say “look, this was my experience in caring for my husband why don’t you try this?”
A death literate society would be one where there is greater transparency of your options. So do it yourself funerals would be something that would be more talked about and perhaps funeral providers would also be able to say, “yeah, you can do it yourself. We can do this bit and this bit, and you can do the rest” and Tender Funerals in Port Kembla in New South Wales is a great example of a funeral provider that absolutely recognises the capability of the families that they’re working with to do things their way. So, yeah, there are just some of the ideas.

Ash de Neef: Cool yeah. Why do you think that more funeral providers aren’t advocating for kind of do it yourself funerals?

Jessie Williams: Just like any other industry, there’s a practice and a history there and a business model, certainly.
There’s probably a bit of paternalism paternalistic care of “it’s okay. We’ll take care of things. We can take the burden away from you.” And I think when you say that to someone who’s in that shock and that grief, it can sound really comforting, but it’s not very empowering.
For some people that will be empowering, everyone has their own journey to take, but I remember my experience with the funeral provider. They were a great funeral provider I wouldn’t fault them. But when they showed me a menu of the five types of flowers I could choose for my son’s casket and they were all hideous, they didn’t say, or you could choose your own.
I had to have someone in my lounge room go “She can choose her own!” “Oh Yes. I can choose my own. I choose white roses. That’s what I would choose.” So yeah, there are some new funeral companies or funeral providers that are. Really paving the way with this Natural Grace down in Victoria have an amazing model and absolutely encourage everyone to check them out.
And another company we love is Picaluna as well. Picaluna are like a network of, funeral providers that you meet the person and then they help like do a bespoke event.

Ash de Neef: Reading between the lines of something you said to Jesse about funeral providers saying we’ll take care of it for you.
It could remove a very helpful part of the grieving process. I imagine. And perhaps what might be more beneficial is to say, we can take whatever role you’d like us to take in this process. If you want us to really spearhead the operation then absolutely. But if you want us to just provide the legal requirements of it, then we can do that as well.

Jessie Williams: A hundred percent. Yeah, I think that’s a great idea.

Ash de Neef: Do you find the organisations you mentioned before, like Natural Grace in Victoria, they have more of that approach?

Jessie Williams: Yes, absolutely. Their starting point is to believe in the capacity of people and then very quickly assist the capacity of people. And so the questions that they ask and how they engage and how they interact is from that fundamental mindset of people can do this.
They’ve been doing dying rituals since the dawn of man. We’ve been doing dying from the beginning. So yes, something’s changed in the last hundred years, we’ve got hospitals and we’ve got aged care, so dying is often removed. And so we’ve lost some of the art of it. We’ve certainly lost some of the skills, but given the situation when you’re in it, given the questions that you’re asked, which is what’s important to you, what would you like?
Most people have an answer. So. Removing those questions is not helpful. I think those questions are very helpful.

Ash de Neef: Mm, great. We’re almost out of time actually already. I do want to touch on a couple more questions. What hope is there to be found in the end of life?

Jessie Williams: Okay. I think the end of life is the ultimate limitation, right?
We’re limited. And just like Coronavirus limits us from going out and we suddenly go, “Oh my gosh, I actually quite like my family or I haven’t called my friend and 20 years and I really must call them”. Stripping away the busy and the distractions has, has allowed us to connect a bit more with ourselves and with others and I think it’s the same in, in death and dying as well.
Dying is a time for community. It’s a time for love and connection. And if we can just expose the positive elements just a little bit more and celebrate the positive elements a little bit more, then I think that it’s going to set us all up better to deal with it when it inevitably will happen.
It’s the ultimate community builder. I mean, in Australia, if you look at bushfires, you look at floods, you look at natural disasters. People always gather. Like we just know that that kind of happens. And we do that as well, in our own smaller way around death and dying. But as a mindset, we don’t often have that same mindset to death and dying. We kind of have a mindset of it’s hard and it’s a burden and we have to get through it.

Ash de Neef: Mm, absolutely. This might not make it to the published episode, but I actually, I had a friend of mine die in high school, uh, just after high school actually. And I took a voice memo of his funeral and I listened to the voice memo a couple of days ago and it was really powerful.
It was like a very emotional experience for me to be put back in that environment. Quite a few years older and to remember feeling the grief, but also not letting myself feel the grief. And it’s been a really interesting journey for me the last couple of months, having conversations a lot more conversations about dying than I normally would have.
So I can definitely attest to that the value of having these conversations.

Jessie Williams: That’s such a powerful thing that you did to take that recording. I mean, audio recordings, as a podcast that you would naturally know this, of course, but I’ve got a recording of the Ave Maria, that was sung in the funeral and my son’s funeral.
And I used to play that back once a year on his anniversary, just to bring back those feelings because I just had to reprocess it. I mean, that’s a form of art that you’ve got there right? And that’s very powerful and well done that you, that you knew somehow back then, that that was something to do.
That’s very cool.

Ash de Neef: Yeah. Is there anything Jesse that you think people should know about the Groundswell Project or about death literacy before, before we end today?

Jessie Williams: So Dying to Know Day is on the 8th of August, it’s been going for about seven years now. It’s a national day of action where people across the country can hold an event where they discussed death, dying and grief, and they can hold an event in any day during the month of August.
We built a public health campaign on the back of a book called dying to know. And this dying to know book is published by a group called igniting change and they’re down in Victoria. I mean, it’s basically a coffee book about dying, but it was such an inspirational book and you’ll find it in many palliative care services across the country.
We thought, well, let’s take the concept of dying to know what are you dying to know? What are you dying to know about the end of life experience that most of us will have? And actually let’s give people an excuse to gather their friends, family, and colleagues to have this conversation. So every year there’s about 200 events across the country.
It’s a truly grassroots campaign. Some people know the campaign day to know that day. And they don’t know that it’s been run by the Groundswell Project. And actually that’s something that we don’t mind because, we are a purpose driven organisation and we really just want Australians together and talk.
So Townsville you’ll have a death by chocolate event where you can come and eat chocolate and talk about that, which is one I always want to go to. There are death cafes, which is a very simple model. You come together and there’s no agenda. You drink tea and eat cake and you talk about death. You know, palliative care services will often put on an events, care planning or advanced care directive seminar for dying to know day.
So it can be three people in your lounge room or 500 people in an auditorium. So yeah, we encourage the aged care sector absolutely to get involved because it’s a key engagement point in the year where you can invite the families of your residents to come together and talk about your values.
Talk about what’s important to you, when we’re facing ageing and end of life. So, yeah, we encourage everybody to get involved and just come to our website to find out more.

Ash de Neef: Fantastic. And what is your website?

Jessie Williams: It’s called the groundswell project.com.au.

Ash de Neef: Awesome. Thank you so much for your time today, Jesse. We’ve covered a lot and it’s been a really great chat

Jessie Williams: Thank you so much for the opportunity Ash, take care.

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