Who Gets to Care at the End of Life?

There’s been a noticeable rise in interest around doula work recently, with public figures such as Nicole Kidman and Chloé Zhao sharing that they are training in this field. For many, this may be the first time they’ve encountered the term “death doula.” (see also: What, exactly, is the role of a death doula?)

But while the language might feel new, the work itself is anything but.

Long before it had a name, people have been supporting one another through life’s most profound transitions; birth, death and everything in between. These roles were held within communities: by family members, neighbours, elders and those who, through lived experience, became skilled in offering care, presence and guidance at the end of life. This wasn’t always seen as specialised work. It was simply part of being human, and part of a community.

Over time, much of this care shifted out of the home and into institutions. Death, like birth before it, became increasingly medicalised and professionalised. What was once held collectively was gradually handed over to hospitals, care systems and the funeral industry.

There have been benefits to this shift, of course, particularly in terms of medical advancement and pain management. But something has also been lost…our proximity to death, our confidence in caring for one another and our recognition of the deep, relational knowledge that exists within communities.

As interest in “death doulas” grows, we are at a crossroads. Because there is a real risk that in trying to define, structure and legitimise this work within a Western framework, or dare I say, a capitalistic framework, we unintentionally side line the very traditions that have sustained it for generations, particularly those rooted in indigenous and culturally specific practices.

Not all knowledge comes with certificates, not all skill is formally taught and not all ways of caring can, or should, be standardised. If we centre only colonial, Westernised models of legitimacy, we narrow our understanding of what good non-medical end-of-life care looks like and who is considered qualified to offer it.

What does Certification mean?

On the surface, it sounds reasonable. People want reassurance that those supporting them at the end of life are skilled, ethical and safe. That matters. But beneath that conversation is a deeper question: What do we lose when we turn care into something that must be certified?

Care at the end of life has always existed within communities. It has been carried through generations as shared knowledge; practical and deeply human.

My grandmother was part of that lineage. She began working in people’s homes at the age of 14, caring for those who were nearing the end of their lives. Over time, she went on to work in nursing homes for much of her adult life. And later, she returned to supporting people in their own homes right into her seventies. Sometimes she worked alongside family members. Sometimes she was the only support a person had.

She had no formal qualifications. She wasn’t registered. She didn’t call herself a “doula,” and she didn’t need a certificate to validate what she was doing. What she had was experience, skill and instinct. She had the patience, empathy and practical knowledge to sit with people in their final moments. And she knew when to drop a casserole off for a grieving family and how to pick up a few groceries for her neighbour who was no longer able to go out shopping for themself. And that was enough. It didn’t require a qualification, it required a willingness. 

When we talk about regulating non-medical end-of-life care, we have to be careful not to unintentionally erase people like her, and the countless others whose knowledge doesn’t come with paperwork. We’ve seen this pattern before. Ways of caring and healing that exist outside of dominant Western systems become reframed, standardised and controlled. What was once community-held becomes something that requires permission.

And in that process, entire ways of knowing risk being dismissed. This isn’t an argument against learning, training or accountability. Those things matter. People deserve thoughtful, informed support at the end of their lives. But formalised regulation is not the only path to that. Mentorship, community-based learning, peer support and lived experience are approaches that don’t close the door to those who have been doing this work, often invisibly, for generations.

There’s also something else at stake. If we position non-medical end-of-life care as something that must be delivered by registered professionals, we risk reinforcing the idea that ordinary people are not capable of caring for one another in death; that we need to outsource one of the most fundamental human experiences. And that comes at a cost. Because at its core, this work is less about skill than it is about presence.

Professional frameworks can support that, but they shouldn’t replace or restrict it. So perhaps the question isn’t: How do we regulate this work? But instead, How do we ensure safety and integrity without disconnecting care from the communities it belongs to?

A personal final thought

I completed the End-of-Life Doula foundational course with Living Well Dying Well last year as a way to deepen my knowledge in service of my community. 

As a Creative Community Facilitator, my work is centred on helping people feel more connected to their lives, less fearful of death and more able to engage with it as a natural part of being human.

I also spent many years working within a hospice setting, where I was first introduced to the realities of end-of-life care, grieving families and the structures that exist to support people through life’s final transition. Seeds were planted at that time that eventually, over a decade later, are blossoming through This Mortal Life. 

I don’t position myself as an authority on any of the things I write about here, but I do believe it’s important to question what I see emerging and I am particularly concerned when I see people pushing to gatekeep. When conversations around training, standards and legitimacy begin to centre white, colonial frameworks, particularly through a capitalistic lens, we need to pause and ask who is being included, and who is being left out. And for what purpose?

Because when care at the end of life becomes something that must be formalised, registered or verified through specific governing bodies, we risk dismissing the many cultural pathways through which this work has always existed. And that matters, because this work does not belong to any one system, framework, or profession. It belongs to all of us.

We need more open discourse about this. I welcome thoughtful conversation, challenge and reflection; if something here resonates, or doesn’t, I’d genuinely value hearing from you.