The Launch of the Death Literacy Index & an Era in Which Death Might be the Easier Dinner Conversation

21 Nov 2019 - Tracey Wallace

Welcome

The dying well trend became better known in the United States and Canada in 2019 when the Global Wellness Institute –– a global wellness non-profit research organization –– announced it as a trend for the year.

But the movement began long before that, as grassroots movements so often do. Perhaps it started with Michael Hebb and Death Over Dinner in 2013. After all, since that launch, Arianna Huffington, Sheryl Sandberg, The Obamas, Tim Ferris, and 200,000 others have hosted such dinners.

Maybe it was in 2015 when Sheryl Sandberg had to grieve the loss of her husband publicly. She was an American household name at the time thanks to her book Lean In, a National Bestseller, and her status as COO of Facebook –– the platform we all love to hate and hate to love.

Or maybe it was in 2016 when Arianna Huffington launched her latest publication project, Thrive Global, and began posting articles there about how she thinks about death every single day. The entirety of Thrive Global is about wellness –– and was Arianna’s brainchild after a frightening day when she nearly did die due to burn out and exhaustion.

Or, perhaps it is something bigger. Perhaps the dying well movement has picked up so much steam because of these bigger names, sure, but also because of the world around us.

Whatever it is, we have become enamored with our ending. But, we don’t have a lot of quantitative information to pull on. It’s all qualitative. It’s all about the way we are feeling, and the way we can sense others are feeling. We still don’t really know what to say about it, or how to help people going through it.

We still put on our American armor, our can-do attitude, our resilience and perhaps our defiance in the face of something really important we know we should talk about, but can’t quite find the time between our side hustles and our cryptocurrency investment strategy.

This isn’t the case in Australia, however. There, studies have been done. There, organizations have been working for nearly a decade to get this right. There, they aren’t afraid to talk about it –– the D word, or the G word (death and grief).

And there is one organization that seems to be right in the middle of the now national conversation happening in Australia around death and grief: The GroundSwell Project.

Beginning in 2010, The GroundSwell Project launched as a not-for-profit organization dedicated to research on death and grief, and raising awareness about how to talk about these “cultural taboos,” and why it is so important to do so.

Their Death Literacy Index is the world’s first major look at the social impact of local and wide-scale compassionate community initiatives to help folks die better and grieve better –– which is launching in December 2019.

For me here at Eterneva, I look up to The GroundSwell Project, amazed at all their hard work, and how much impact they’ve been able to have. They stand as a light on a hill in the dying well industry, and so I thought it important to talk to their CEO, Jessie Williams, about the work they’ve done, the state of dying well around the world, and why this work matters so, so much.

Here is our conversation.

In Australia, there seems to be a lot of momentum around dying well and grief wellness. That is not the case in the United States. Do you have any thoughts as to why that might be?

I agree with you absolutely. There seems to be a GroundSwell, (pun intended!), in Australia as compared to America.

We recently held an international conference where we had 350 delegates from around the world come and talk about reclaiming dying, death and grief.

Professor Allan Kellehear, who is a sociologist and does a lot of work in America, made a point to our delegation about how America, as a country, is a harder nut to crack when it comes to shifting the culture.

I think a long conversation with red wine could be had about the reasons why a death avoidant culture seems to be stronger in the U.S. I don’t feel very qualified to talk about it in terms of comparisons, though.

Of course. Can you talk about what is happening and changing in Australia around death, dying, and grief instead?

Absolutely. This is happening all over the world with the baby boomers aging, but in Australia, they are really leading the charge.

Here, the baby boomers are getting into their twilight years and they’ve grown up really thinking through the values that matter to them, which is awesome.

So, when they start looking at the last 10 years of their life, a portion of which is going to be their end of life experience, they are saying, “Well, we don’t necessarily want to die in an institution surrounded by machines that go ‘ping’. What are the alternatives?”

And, their weren’t many ‘known’ alternatives nine years ago because end of life was a rarely discussed topic on the airways That’s when GroundSwell started, and has since been talking about death every day. The first six years, through many many arts and health projects, we were proving ourselves worthy, working with many amazing people in communities and artists, I suppose proving that if you talk about death, it won’t kill you!

Where did you start? What changed after those first six years?

We worked a lot with young people in high schools and artists and we started a campaign called ‘Dying to Know Day’ based on a wonderful book called ‘Dying to Know’. In the first year of the campaign there were only 27 community events and this year we had over 250!

But back to what changed…. about three years ago, we paused on the project work because we felt that the Australian end of life sector (and the public) were more engaged than ever in the conversation. Palliative care really started to take up a more public health approach and our state governments started to fund more palliative care.

We also saw the interest and rise in engagement in our public health campaign, signaling to us that we needed to really think about our role and how we could best strengthen the social movement, in a sense to re-claim the end of life experience as primarily a social experience.

GroundSwell went from being known as an organization talking about death and dying in Australia to being really at the forefront of the social movement. Now, people are learning about end of life care and conversions, and people are learning about do it yourself funerals and there are a bunch of inspiring people and organizations also leading the way. We’re not the only ones now which is a thrill

It’s just a really exciting space to be in because now we’ve got friends and partners everywhere.

Beyond the movement really picking up steam, GroundSwell seems so different because of your tone and how you approach the topic. How does that play into the work y’all do?

I think the fundamental principle is that we don’t normalize the conversation. We socialize the conversation, and it’s a really, really important distinction.

Normalizing something means that it wasn’t normal to begin with, and that’s why we have to normalize it. We’ve always held at GroundSwell that death is a part of life. You don’t have to normalize it, but we do need to socialize it.

That means that we need to make it easy to discuss. It needs to be easier to talk about, just like any other topic in life. We should be able to talk about going to a funeral like we talk about going to a wedding –– where it was, who it was for, and what the entire experience was like.

And the fact that we’re not medically trained helps immensely with this mission. We’re not paid as professionals in end of life so our ‘voice’ is fundamentally aligned with everyone else who doesn’t happen to work in end of life

On our part, our whole team is authentic. We have lived this experience. We either work with dying people or we’ve experienced the death of someone very close to us, or we’ve cared for somebody through their dying.

We don’t outsource our marketing, either. We do it all ourselves, and we have a very supportive, passionate, creative team. The way we see it is that our experiences and our learnings are valid and relevant. When we write and produce things, it’s a result of our daily reflections and conversations with each other, and with our friends and network in this space.

Have you tried outsourcing any of the marketing work?

We have –– and it just…doesn’t work. The agencies try to make it cool or what they come up with just so obviously doesn’t come from their own experiences. I think that’s the difference.

Now, to be sure, we aren’t experts. We use Canva and we mock up things ourselves, even though we laugh at the fact that we’re not skilled.

But even when you compare our work with other stakeholders in the end of life space, I think it does stand out because you really are comparing it against what the health system will produce which is what we call the “wrinkly hands syndrome.”

What’s wrinkly hands syndrome?

It’s when organizations in the dying well or end of life space just post stock footage of old people and there’s no connection. There’s no feeling there.

I recently saw a brochure with a dying man in bed, surrounded by his family, and he was wearing an ironed business shirt…I’m like..seriously?! This style of communication does nothing for building confidence and relatability.

Instead, for everything we do, we ask ourselves: “Does this align with our mission of socializing?”

For example, we’ve got a program at the moment in a hospital and a palliative care ward. When you walk through the ward, usually you just see these health promotional posters, which are branded from the health system. They privilege the health system, not the people who are dying and their family and friends.

So now, when you go into one of the dying people’s rooms, you’ll see a poster by the GroundSwell project, which reminds the people in that room that they can bring their blankets and their sandwiches. They can’t bring their pot plants, but they can bring pretty much anything else to make this as comfortable as they want. The health system forgets to tell you that, and it’s important.

That’s our goal. We try to invade spaces like that and make them as reflective of our social needs as possible.

What about this topic around death, dying and grief makes it so important to you? What do you think we’re missing by not having it?

I think when you really dig down, down, down, down, deep into why, I think there’s one word that always comes up for us at GroundSwell, which is connection. It is better to die connected than to die not connected. And by that I mean connected to yourself and connected to the things and the people and the animals and the world that you love.

By not having conversations or at least being able to attend to this part of life in our relationships and in ourselves, we’re missing out on the joy of life, which is to feel the connection.

There are people who are very happy to go into that ‘gentle good night of death and not have a conversation about their end of life, and they’re fine with that. It’s not about making people wrong for not talking (even though it can create many issues for the family and friends that remain behind!) I guess talking is just one form of communication.

Generally speaking, what we see is that people, when invited to reflect and connect with themselves and others, they’re up for it and they want it.

You’ve never heard laughter in your life like you’ve heard it at an end of life planning workshop that we run.

People come in and are kind of freaked out, and then when they leave, they leave laughing. One person recently shared d that they walked home via the beach and how they noticed the sparkle on the ocean just a little bit more.

It turns out that when we ‘lean in’ to our end of life, we lean in to our lives and into our relationships.

What do you think a lot of people get wrong about the dying well movement?

I think the fundamental oversight is when we other people. What I mean by that is when we talk about people, populations, communities, families, friends, whatever labels we’ve got for humans, when we talk about them like they are separate from us and our jobs –– we alienate people, and the industry. I’m taking on the perspective here of someone working in the health or the aged care system.

The better alternative is to remember that 10 out of 10 of us will die.

When we’re talking about the dying experience, we have to talk about ourselves and our colleagues and everyone else at the same time. So, let’s not pathologize by giving labels to things. Let’s start with a recognition that we’re all in this together. This gives us a change to create intimacy in spaces where it’s really needed. We can imagine the importance of intimacy at the incredible point of birth - so too we need it at death

That’s the first thing we get wrong. The second is that when stakeholders like government or places with health budgets are looking to make dying better, they think more services are needed. Now, more services are always helpful, but we are never going to have enough services to meet the needs of our dying in the next 20 years. There’s just too big of a demographic shift.

The lack of equity of services is a social justice issue, but if all we talk about are services, we’ll miss the wood for the trees.

The answer isn’t to just throw more money into more services, to more medical care. What we need to do is actually build the death literacy of the population so people have more choices, and so they can build social support networks and better fulfill their end of life wishes.

This is bigger than services. This is about education and community mobilization It’s deeply unfair to talk about the need for people to have choice at end of life when we don’t also address the confusion and fear related to just really not being aware of one’s options.

Speaking of death literacy, how did that term in GroundSwell’s research come up?

It’s a phrase that our researchers came up with about five or six years ago now. There’s a team called The Caring and End of Life Research Team and it includes the involvement of three universities and our founder, Dr. Kerrie Noonan. All of them were a part of the research and coming up with that term. And, they did a seminal piece of research called Bringing Our Dying Home.

What they did in that research is they followed a number of social networks that turned into care networks, because somebody in that network was dying and they wanted to die at home. They then looked at the attitudes, the behaviors and the impact on the people that were involved in helping someone die.

Next, they looked at the outcome of that experience and they noticed that those people who were involved in a caring network developed this confidence and this ability to talk about their own end of life and to understand the end of life system. That includes palliative care and all the other bits and pieces.

They were reflecting on this set of knowledge and thought that this was similar to health literacy.

When you have a disease, you learn all about the disease and you learn all about the types of drugs you can get in the health system that supports that disease. That’s deemed health literacy, which then made sense that what these researchers saw with people who helped others die is that they had a high death literacy. That’s where the name came from.

How can someone develop death literacy?

The way we develop our death literacy is through experience.

You don’t necessarily develop it by signing up to an online course or going into a seminar. It’s primarily through experiencing the care and death of someone in our networks that we learn.

So, we’re developing a world first death literacy index, which is a survey tool. It’s being validated by the researchers at the moment, but it’s a survey tool that any population group can use and be able to ask and determine:

We can use the results of the index to craft strategies over the next few years to help that population get better at this. I’s an evidence based approach. It’s pretty exciting stuff.

What gets you out of bed every morning? What gets you so excited about some of the work you’re doing there and the things that are coming to fruition?

Our mission is to build communities that respond compassionately around end of life, and that’s what gets me out of bed.

Some people might say that about a mission statement and it’s just like, “Well, that’s my job to say that.” But, it’s really not for me and it’s not for our team, because to respond compassionately around end of life is something that people want to do. There’s just a lot of barriers to it.

To make it easier for people, that’s what gets us out of bed.

These days, we get invited into groups of people who already think and feel like us, and they’re just grateful that there’s an organization that can help them. That means that every day we get to hang out with compadres, people that really are committed to the same vision that we have, which is that we all live, grieve and die in line with our values.

I think in the world we’re living in at the moment with so much connection via social media and yet so much disconnection felt.

Massive politicking and power struggles and the climate change crisis….. talking about death is actually the easier topic compared to some of the other topics around the dinner table!

And we’re here to help facilitate it, to help educate people, and to build connection.

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