Five minute read
Emma Clare, from End Of Life Doula UK, explains the who, what and why of being an end of life doula and introduces us to a new pilot project, right on Poppy’s doorstep in Richmond and Kingston, to extend this valuable care to more people via the NHS.
So, first of all, what is an end of life doula?
We get asked this a lot and it’s very hard to sum up in a sentence! A doula provides a mix of practical, emotional and spiritual support — if that's what the person wants. By spiritual support, I don't just mean religious support. It could be that the person finds meaning in being in nature, for example.
We don't just support the person who is at the end of their life. We support the people who are important to them, like adult children, so that they can then better support their parent.
What sort of people become end of life doulas? What kind of things motivate them to take on this role?
There are obviously many different reasons. But it’s often because they've had experience of supporting a relative to die.
Maybe they didn't have a good experience and want to make it better for others. Or they might have found that they came into their own whilst doing it.
That was what happened to me. I thought, wow, this is obviously a challenging situation to be in, but I feel like I could help other people with this.
Most of our members have another health and social care role. So many of us are nurses, midwives or therapists. It definitely attracts people from helping professions.
How do you train to be an end of life doula?
All our members are trained by Living Well Dying Well.
It isn’t quick! Before you can support other people with death and dying in a truly competent, comfortable way, you have to do a lot of work looking at your own mortality. The training is flexible, but I would say that you cannot do that work in less than 18 months.
There is no such thing as the finished article doula. You are always learning, always developing — that’s how it should be. You learn from each person you support and you take that to the next person.
How do you find an end of life doula?
Our website contact form comes through to our referral team. We will call you to find out what you’re looking for, and to explain what doulas do and don't do, so that everybody's expectations are clear.
Get in touch with End of Life Doula UK to find a doula near you.
We will try to find a good match. This might be around religious or cultural needs or any other qualities you are looking for in a doula.
We don’t want the ability to pay to be a barrier to accessing support. As an organisation, we fundraise so we can subsidise if the person can't pay themselves. A doula can be free if needed.
Most of the time, if people can afford to pay, they want to pay. Some people find it reassuring having a transactional relationship, as it can keep boundaries clearer.
Our members are all self-employed, so they can technically charge what they want. Most members follow our recommended rates. Some choose to volunteer.
What benefits does being supported by a doula bring?
As informal carers, people can almost lose their family role, becoming a carer instead of a daughter or son. Some of those caring tasks can be passed onto a doula.
A doula also has a lot of knowledge about local services and will be able to help navigate sometimes confusing systems.
If someone doesn’t have family or friends to advocate for them, we can take on that role, helping to make sure that they receive better care. We can also help with advance planning and making your wishes known.
Tell us about the pilot project in Richmond. How did it start, what does it offer and who is able to access it?
There’s a fantastic GP in Kingston, Dr Catherine Millington-Sanders. She really understands the doula ethos and wants to champion it, so she helped us to access funding via an NHS innovation fund to offer free end of life doula support to residents of Kingston and Richmond.
We've been doing a lot of outreach work — speaking to hospital discharge teams, nursing teams, GP surgeries, libraries, community centres and carers’ centres — letting people know that we are here.
It’s entirely self-referral, but health professionals can also signpost people to our website.
What benefits do you hope the pilot project will bring?
By working through the NHS, we hope to support a more diverse range of people, people who otherwise wouldn't have heard of us. We have a good, diverse team of local doulas available.
We’ve also already had feedback from other healthcare services saying that it's taken some weight off them. The system needs that more than ever.
There are so many brilliant healthcare professionals supporting people, but they don’t have time to do everything. Doulas and healthcare professionals work together.
What would you say to someone thinking about getting in touch about end of life doula support?
Getting the services of an end of life doula means accepting that you are at the end of life. That can feel like a big leap for people.
But we can work with people for years. Sometimes we work with people who are fit and healthy who just want to do their advance planning. It's actually all about living, not just about dying.
There can be so many services involved when somebody's dying — it's overwhelming. The thought of getting another service involved can feel too much. But I would really encourage you to have an initial conversation with us. There is no pressure. We can fit around what you need.
What is your connection with Poppy’s? What does End of Life Doulas UK have in common with us, do you think?
Poppy’s have spoken at our training sessions, and our members have visited Poppy’s, because we have the same ethos.
There’s constant pressure for death care to be standardised. Wouldn't it be easier if we just took the same approach with everybody? That’s how the big companies do it. But not End of Life Doula UK and not Poppy’s. We’re never going to compromise on that.
We are always going to be curious, to learn about someone from scratch and not think we've got all the answers. As doulas, we want to learn about the person and the life that they have lived and to honour that. And I think that’s what Poppy’s does too.
Live in Kingston or Richmond? Get in touch with End of Life Doulas.
Read more interviews on Talking Death. Hear from a palliative care doctor or a disaster response planner.
To stay in touch with all the latest news and updates from Poppy's by email, sign up here or contact us if you need help planning a funeral.