The Role of The End of Life Doula in Australia

Challenges and opportunities in a modern landscape

It’s time for a difficult conversation. We are good at that aren’t we? This was a challenging piece to write and I imagine it will be challenging to read. Challenge isn’t always bad, it is hard, but good things can come from hard conversations. After all, the role of the End Of Life (EOL) Doula is a challenging one and we tend to operate in the space of things that are layered and complex and hard. Talk to anyone who has done the work of an EOL doula authentically for any length of time, and they will tell you it is the hardest and best, most exhausting and rewarding work they have done.

People come to the role of EOL doula from different places; we carry different traumas, different experiences, values, and ethics into the role but we are united in commonality as well, we all want to better the end of life experiences for fellow humans and support people in what matters to them, acknowledging that none of us are getting out of here alive. One day it will be our turn to be looked after as well.

But today the hard conversation is about the role itself. The landscape is rapidly changing in Australia. In the last few years there have been many developments and offerings which have both strengthened and stretched the role and position of EOL Doulas. We also can’t really consider where we are going without first acknowledging where we come from. I am mindful that those of us in the work stand on the shoulders of countless others. Across the USA, England, New Zealand, Canada and Australia there are dozens upon dozens of people who have worked to reclaim death from the industries and institutions that sought to monopolise it. There are people around the world who have been doing this work for decades and every person we serve, every relationship we form, is woven into the web of the legacy that they created.

I am focusing here on the development of the EOL Doula role, but I am also keenly aware that these are pertinent conversations for the funeral industry as well. Monopolies have plagued the modern industry, businesses who grow by acquisition and get big enough to buy out the business models and independent operators designed to subvert them. As if all you must do is throw money at something and it will either get better or quieten the opinions of those who may once have challenged it.

One thing we have seen very slowly grow here in Australia is an increase in choice. Choice of EOL Doula (and Doula adjacent) training. Choice of EOL Doula services. Choice of collaborations. Choice of peer support and networking. Choice is always good, and it doesn’t hurt to lift each other up – to work alongside each other instead of existing in competition with each other. In business, we know that monopolies are unhealthy and not supportive of diversity of services. There can be no robust informed decision making if there is no need to educate people about options because there aren’t any. Choice is good for business and good for community but all too often businesses step into the fear mindset and want to be the only providers or the only people controlling the narrative. This doesn’t work for longevity in business, it goes against community ethics, and it won’t work in death.

Often choice is, advantageously for some, reframed as competition and competition can quickly turn into a race to the bottom. That’s why I am putting these thoughts down now.

I have spent the last few months talking to people in Australia and overseas about the development of EOL Doula in Australia; the changes I have seen, the challenges that are flowing from them, the complicated tapestry of interconnected relationships between community and corporate… I am hearing so much from others about their experiences and encounters in trying to set up and do this work, and as I have these conversations both here and abroad, there are lessons I can see laid bare from the places around the world who are ahead of us in the journey of developing this role as a modern offering in our society – in all the complexity of what that means.

And so, I want to outline what I see and plant a seed for a way forward.

A WAY FORWARD

There are only a handful of trainers in Australia offering training for end-of-life work. The vast majority of these are privately run courses and workshops. The end results of these have various names – end of life doula, death doula, end of life companion, death walker, end of life consultant and probably a few others I am forgetting and more that I am not aware of. Each of the trainings are very different and they have different focuses. I have been lucky enough to know most of the trainers and do most of the trainings, and I often tell people who ask, ‘call each of them and talk to them about their values and ethos and find someone who feels right and fits you because they are all so very different’. It remains good advice in my book.

The introduction of the Cert IV EOL Doula, the first government accredited course in the world that teaches the EOL Doula role, has the potential to fundamentally shift the landscape in Australia and the changes have already begun. At the time of writing, there are around three people in the country that have that qualification, but that won’t be the case for long. There are another twenty or so due to graduate soon and there are quite a few others who have completed the skill set as well. With this, we see there is emerging discourse about accredited and non-accredited EOL Doulas, discussions about what level of training will be acceptable and what won’t, in various situations. Will government facilities and private institutions allow EOL Doulas to work or operate in their spaces if they have the option to require the EOL Doula hold the Cert IV qualification? And what does that do to the EOL Doula’s and communities who don’t have it, or don’t want it, or don’t care? It is a level of professionalisation which is a double-edged sword. On the one hand, it has been an important step to getting EOL Doulas employed by hospitals and nursing homes, but it could also make things difficult for those who want to work in the community and don’t feel called to gain the qualification to do so. And we need to remember that the role and function of an EOL Doula is, first and foremost, a community and grassroots function. It is a service we have done for each other for much longer that governments have been accrediting training courses.

The diverging streams between accreditation and not, has the potential to do damage to the majority of EOL Doulas who do not have and/or can’t access the formal training (for various reasons e.g. cost, travel, time etc), and the real losers will always be the people who need an EOL Doula the most. Because professionalisation comes at a cost. Prices go up, people have more of a competition mindset, a hierarchy forms and suddenly you have an industry. What we need is a way to anchor these streams and orient them firmly around community – to cement the validity of and the place for the community and the grass roots services alongside the professional services and have them both equally represented.

And we can do it right now, before it’s too big to manage.

THINGS THAT COULD HELP

For months now I have been talking to people in Australia and overseas, people who are working as EOL Doulas, people who want to but aren’t, people from organisations such as End of Life Doula UK, OWL Foundation NZ, and in Australia, HELD, SEAKTer, AHFA and NDAN… academics, community, business and practitioners alike, spreading my ideas for things that would contribute to these discussions. The things I have been raising as potential value adds and ways to cement community in the conversation are as follows:

1. We need an international effort, an international EOL Doula Charter to really cement this as an international conversation. Recent conversations about this idea are encouraging; the idea being to set an international baseline for commonality: no matter who you have trained with or where your values sit, this would be an agreement that people and professionals alike could sign to show their commitment to and willingness to operate within this ethical framework, no one EOL Doula is bigger or better than another.
2. I think we need to follow in the footsteps of our colleagues in the USA and introduce an independent proficiency exam for all EOL Doulas.
3. We need an international conference dedicated to this community-based work – both EOL Doula and Home Funeral, to springboard the collaborations and partnerships required to foster growth.

THREE REASONS WHY

Why do I think these things are the way forward? I have three reasons.

Let’s start with the easy one. Dying and Death is universal as much as it is deeply personal and individual. It is a conversation we need to respectfully be having on an international platform. Increasingly, when a person asks, ‘do you know what Hospice or palliative care is?’ in the UK, USA, Australia, Canada etc. the response is a general, ‘yeah, I know what they are’. What we are trying to achieve is the same thing with EOL Doula. Until we are having international conversations, this widespread understanding remains localised and dependent upon the work of individual practitioners in pockets of community. This is very important for those pockets of community, but there is an element of reinventing the wheel to this, which broader conversations can assist with.

We all want to be doing ‘the work’ and for a decade now we have been elbows deep in the community education required to get society to a point where we can ‘do the work’… often that education takes up so much time that we don’t then have time to do ‘the work’ we are educating about, or, we need to have other jobs to pay the bills because educating about ‘the work’ is not the same as being paid to do ‘the work’. So, we need to be united and think bigger. Big conversations; big conferences and partnerships can provide a platform for greater community recognition for, education about and acceptance of ‘the work’. This is the second reason, we all have a slightly different take on what ‘the work’ of a doula is… and ‘the work’ is always going to be governed by the individual EOL Doulas’ skills, drive and their passion. This is one of the reasons choices are so important, no one gets to own what EOL Doula is, no one person or place controls that narrative and so people get to make informed choices on the merit of what is being offered and how well that resonates with their ethics, values and needs. No one EOL Doula service will ever fit every person all the time. Choice is key for good community outcomes.

The last reason is bigger but it’s also the reason I decided to put pen to paper (ok, fingers to keyboard) in the end. PROFICIENCY. With the natural division that is forming in the EOL Doula spaces, we need to find a way to have unity. Part of that unity is creating an even playing field for all the people in the space called to do the work. It doesn’t matter where people get their training, what matters is that all the people have a basic level of skill and knowledge to give people comprehensive, holistic and meaningful support. How do we do this? Well… Proficiency. This happened in the USA, and it could very well be undertaken in Australia.

It could be like this – an EOL Doula does their training and then goes to the organisation and says, I would like to sit the proficiency test now. If they pass, they get a tick of approval. The public then knows that the EOL Doula has the basic skills and knowledge to do ‘the work’, no matter what brand of training they have undertaken. It is confidence building with the public, it is unifying with the movement and importantly, it builds transparency and integrity because it asks all trainers to deliver their offerings to the standard (at least) that will see their EOL Graduates (no matter what they are called) pass as proficient. In all honesty, this is likely the case right now, and from a training point of view, it may very well be that nothing needs to change. But it could make a huge difference to the people on the ground. Now is the time to be having this conversation. While the space is still emerging and we don’t yet know the extent to which the Cert IV will change the landscape, while we are not overrun with courses and trainers and while the space is still small enough that many of us already know each other.

What we need is an impartial and widely representative organisation to administer it. Currently, that is the missing piece, what Australia needs is a representative body for EOL Doulas that makes space for all voices and serves all EOL Doulas as equals. It is my hope that something like that is not far away; a representative body that would include people from all the different training spaces that wanted to be a part of building it. This entity could educate EOL Doulas on the gaps that EOL Doula trainings currently do not fill (like local and state by state legislations etc) but they could also hold the proficiency standards and run the tests. Importantly, the body would need to be completely independent and representative of the movement as a whole. It won’t work with a controlling interest. It needs to be a true and collaborative weaving of likeminded (and hearted) people working in their commonality despite their differences. A tall order? Perhaps. But if anyone can do it, EOL Doulas can.

BRINGING US ALL TOGETHER

The role of the EOL Doula is old. The reintroduction of the role into the contemporary systems we have made for each other is new. We are so lucky to have had people fulfilling the role in our local communities for decades, long before it was ever considered a service, and it has given us a framework around which we can explore and experiment and breathe into being, new ways of caring for our people. The development of EOL Doula training has been fantastic and the fact that it has been in response to a growing demand for people who want to do this work is nothing short of brilliant. The recent introduction of the Cert IV to the EOL Doula landscape was an exciting and positive addition to what we are all building here in Australia. We have a system in our modern society based on medical models of care and we need ways of introducing the non-medical roles and supports into these systems because it will only ever create better outcomes for people, the Cert IV fills that need. The conversation, however, is much broader.

EOL Doula is a service people have done for each other for hundreds of years. Some would say thousands. While in this modern world it makes sense that it becomes a service offering, a job, it shouldn’t replace the idea that communities can also do this for each other. What we have not yet worked out is how we can make a job of ‘the work’ without withholding knowledge. The fact that builders exist does not stop people taking on weekend DIY projects. The fact that funeral directors exist, however, has quite conveniently convinced people they can’t do their own funerals and corporate professionalisation and monopolies disempowering people has been the result. That’s the worst possible outcome for EOL Doula that I see. We need a way to say, this is community knowledge first. This comes with the raising of death literacy rates in communities but also, I hope, as a product of authentically showing up in our communities and offering support without having to be the expert. If we can do this, we are going to go some way to secure and safeguard the EOL Doula role for the grass roots EOL Doulas who don’t necessarily want, or need, to be part of the systems and models, as well as for the people who want to show up in community and do the work because they have the heart for it, not the piece of paper. This is one of the very important reasons that we need an advocacy body that represents all forms of EOL Doula equally and is representative of all the different trainers and pathways into the work.

You can find good EOL Doulas everywhere, sometimes they don’t even know that’s what they are. 

We also need to avoid monopolies – there will always be pioneers and people who get to market first. There will always be people with the loudest voices, the most money or the biggest followings who make the most noticeable waves and hence go a fair way to define directions. But it doesn’t have to be all there is and no one person or organisation should (or ever could?) oversee setting the tone. We have a beautiful tapestry of community, academics, EOL Doulas and Doula adjacent roles in Australia who represent many different ideas and values, we could come together in the spirit of true collaborative representation – while the movement here is small enough to have these intentional conversations and do some groundbreaking work on intentionally setting the narrative of where we want EOL Doula to go.

Let’s start talking to our international counterparts. Let’s start looking at what EOL Doula conferences and development on international platforms might be if the academics and practitioners came together. Let’s start feeling our way into what representation for everyone could really look like. What could it be if we were to co-design the integration of the professional and the community services? Let’s acknowledge that all voices are equal and while we don’t always agree on everything, there’s a beauty in that and ultimately, we have more in common than we have in our differences so let’s not be afraid of robust and dynamic conversations, after all, isn’t that what we do?