Death and dying are rarely discussed in our society. As the quality of end-of-life care in public services is diminishing, these women are pushing for a radical rethink of how we deal with death

Alex Watson has always considered herself to be a spiritual person. Although she grew up in a strict Christian household, her interests have always leaned more towards “new age ideologies, for want or lack of a better word.”  

“I’ve been living on a very particular spiritual path for quite a long time,” says Alex. “I’ve done a lot of self-reflection, being able to live in the moment, take it one day at a time, getting your ego out of the way.”   

Alex led what she describes as a “rebellious” life, partying and battling with issues of addiction which have followed her ever since. “I was young, wild and crazy in the 90s. Then I got on the straight and narrow.”

She discovered the gift of meditation by reading the ‘Tibetan Book of the Living Dead,’ a famous, ancient Buddhist text that teaches the meaning of life. “That’s one of the things that Buddhist monks do in certain practices; they meditate on their own death every day,” Alex tells me. 

It was when she was away on a meditation retreat in the summer of 2019 that she first discovered what a death doula was. “Someone was giving a talk, and she was a death doula. She’d done the soul midwife training, which is a slightly different training, it’s a lot more esoteric, sort of on the spiritual side.” 

Alex wasn’t a stranger to death. She already had a job as a care worker in a home for elderly people and had looked after her own father, mother and aunt as they were dying. “I’d helped with quite a few different elderly relatives before they died, and I remember thinking: ‘Gosh, I feel really drawn to this.’ I didn’t find it scary, looking after people towards the end of their lives or caring for elderly people with dementia.” 

Later that year, Alex began training as a soul midwife, offering assistance to dying residents at the care home where she worked in Norfolk. She decided to train as an official end-of-life doula in 2021 after the passing of her mother, seeking a more “professional” qualification.   

“I was reading and learning about end-of-life doulas. I thought actually, that training looks really good because it’s a bit more practical and there’s more of a mentoring support system, you become a member of the professional body, it just felt a bit more in depth and well-known,” says Alex. 

Although death doulas seemed to be “well known” to Alex, the practice isn’t necessarily familiar to the average person. End-of-life doulas, also known as death doulas or death midwives, offer non-medical, holistic support to people with serious or terminal illness as well as their loved ones. This can entail assisting them during hospital appointments and planning for death, both practically and emotionally. 

According to End of Life Doula UK, a death doula is a ‘compassionate, trained companion who supports individuals with a terminal diagnosis and those important to them.’

“I like to call us professionals with a small p,” says Emma Clare, a Chartered Psychologist and end-of-life doula in training who also works as Chief Executive Officer at End of Life Doula UK. “Doulas are not experts, but another person within the community that can support people, who is confident and has more knowledge about end of life, death and funerals.”  

End of Life Doula UK is a registered charity and membership association which provides training courses for end-of-life doulas. The training isn’t free, costing £790 for a foundation course.  “It is a little bit of a barrier that you have to pay for the training,” says Alex. Once they have completed training, the doula can decide if they want to start charging for their service or continue to work voluntarily.   

Currently, End of Life Doula UK has around 400 doulas, with approximately 15 new members joining each month.  The membership shot up during the pandemic as the reality of dying moved from spaces such as hospitals and hospices to inside people’s homes during lockdown, says Emma.  

“I think a lot of people during the pandemic either had a really negative experience of death, and thought I want to help other people avoid that happening to them. Or they had quite an upsetting but positive experience, they supported their own friends or family or neighbours, and they thought, do you know what? I was alright at that. Maybe I can help other people.”

The word ‘doula’ is mainly associated with maternity care and free birthing practices. Generally, it refers to somebody who supports pregnant women through and after their birthing journey.  

For those who are familiar, the doula may spark the image of a mystical, ancient community caregiver. The term derives from the Greek word for ‘woman who serves,’ and dates back to prehistoric times.  

“The work we do isn’t really new, it’s probably existed since humans started living in communities,” says Emma.

“The doula is bringing back the ancient wisdom from hundreds of years ago that just would have been a woman in the village that everybody knew who would come and do the births and deaths,” says Alex.

It is a predominantly female-dominated field, for every ten members at End of Life Doula UK, one of them is male. Emma has observed that more trans and gender non-conforming people have signed up to train as doulas. “It tends to appeal to people who, for whatever reason, feel like they have additional needs that aren’t recognised by the system.” 

In recent years, the doula industry has exploded. Divorce doulas, bereavement doulas and transition doulas (for transgender individuals) are all services available for those seeking care and others who are looking to provide care.   

Alex has completed the foundation course of a training programme consisting of four separate modules. Doula-ing is something she describes as a “gentle role.”  

“I’m just around, getting coffees, giving lifts, being the person people can talk to about death,” she says. She describes the primary function of her role as “advocating for patients to actually talk to their doctors.”  

“The healthcare workers are very busy, their family and friends are absolutely devastated, and they don’t want to talk about it. Often, they just needed someone to talk to, do their planning and talk about their legacy, what they want to leave behind for their children, like memory books, recipe cards, you know, stories.” 

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Gloria Ferguson was reading a newspaper article whilst on a city break in Krakow in the summer of 2021, when she discovered what an end-of-life doula was. “I just thought, wow, that’s really what I would like to do,” she says. Three weeks later, she signed up for a course and has been in training for the past two years.  

Like Alex, Gloria pinpoints the passing of her own family members as well as her spiritual upbringing as experiences that brought her closer to death. 

“The experiences that I’ve had with my family enabled me to step into the role,” she says. “I was lucky when I grew up because my mum was quite spiritual, she had an auntie who was a medium, so death was not never discussed, and that made an understanding that death is a part of life.” 

Gloria, who is 68, was in the room during the death of both her parents, the experience changed her outlook on life forever. “It was one of the biggest privileges of my life,” she says. “I just knew that I had to be there as far as possible, at the last breath. I think doing that helped me with my grief and moving forward.” 

Dealing with death is as much a task for the doulas themselves as it is for the people they’re supporting. “What we need to do is apply it to ourselves,” says Gloria.  “We have to be comfortable to park our own beliefs and values, to just be present for that person and their family, but then have the skills to know the dynamics within families and relationships.

“I went through four deaths within a few years. My parents, my auntie and my uncle. Then two of my closest friends died as well. So, it’s sort of helping me at the same time,” says Alex. 

Death is one of the only certainties in life. For many, it is an abject horror; a frightening reality that they would rather push to the back of their minds, than confront head on.  But for the doula, death is reconstructed and conceptualised as an immersive experience. 

Emma describes doula training as “really in depth, graphic even.” During training, doulas are encouraged to step into the role as if they’re taking part in an experimental acting class: imagining their decomposing body, the experience of being in a coffin, the sensation of cremation. “There’s no stone unturned,” says Emma. 

To Gloria, a culture that is death-shy is one that is detrimental to society’s overall well-being. “This culture that we live in, in this country particularly, is that death is medicalised, it’s sanitised, it’s held at arm’s length. People don’t want to discuss it. They feel it’s morbid.” 

When asked how she copes with being surrounded by the dying, she pauses and says in a hushed tone, “I absolutely love it.”  

But for Alex, the fear of death hasn’t escaped her. “Sometimes I’ll feel terrified of death,” she says. When asked what she thinks will happen once we die, she ponders the idea of reincarnation.  “I’d like to think my soul will just become part of the next soul, and then it’ll be someone else’s turn to have a life, and that’s ok.” 

The doula’s role is to stand as both a practical guide as well as an emotional support system. This can involve planning an advanced statement for a client, which Alex calls a “living will”, outlining the preferred circumstances of death as well as formalities such as Do Not Resuscitate (DNR) forms. 

Gloria is based in Newcastle and has supported four people as a doula; two had an end-of-life diagnosis, and two were family members of the deceased. “It’s the business of supporting family as well as the person who is dying or has the end-of-life diagnosis and helping them navigate health and social care services,” she says.   

The profession is “unregulated,” she says. “Sometimes part of the challenge is that doulas who’ve been trained for a long time are met with suspicion like, who are you? What are you doing? I’ve never heard about it,” 

However, the position of a doula as a third way between familial relationships and healthcare professionals is precisely part of their appeal. “There’s more of an openness to speak about those sorts of things with doulas rather than relatives or psychologists or nurses,” says Gloria. 

“I think sometimes relatives are too close and they don’t want to share their deepest fears or feelings. They don’t want to worry their relatives particularly.”

But the sense of “powerlessness,” particularly when it comes to supporting relatives of the deceased, is the biggest challenge for Gloria. “If somebody has a terminal diagnosis, we can’t fix it. All we can do is just be present.”  

“Grief will come like a tsunami when the time comes. There’s a powerlessness and helplessness that I have because I can’t do anything. It’s their grief, and they have to navigate it.”

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Ten years ago, the UK was ranked as the best country in the world for end-of-life care. The 2015 Quality Death Index said that the services provided by the NHS were “second to none.” A similar study from 2022 also placed the UK at the number one spot among 81 different countries worldwide. 

However, those who work in the industry say that the state of palliative care in the UK is rapidly deteriorating.  

A recent report by Palliative and End of Life Commission, also published this June, stated that there is a ‘strong and widespread concern across all submissions regarding inadequate, inconsistent, and unsustainable funding for palliative care services.’ 

Last October, there was an estimated shortfall of £60mn in funding towards the Hospice sector from the government, leading to staffing cuts and bed shortages.  

Research by King’s College London reported that ‘more than 100,000 people die in the UK with unmet palliative care needs’ every year. Marie Curie estimated that ‘around 1 in 4 people currently do not get the end-of-life care and support they need’ 

The topic is heightened as the House of Commons have narrowly backed a vote for the assisted dying bill this June, a decision that health secretary Wes Streeting has criticised, saying that the palliative care sector is not “where it needs to be to give people a real choice.” 

Emma, who is based in York, experienced the felt effects of this firsthand, working as a home carer after completing her bachelor’s degree in psychology. “I was driving around, helping people to get washed and dressed, making meals and things,” she says. 

It was a job Emma describes as both “beautiful” and “frustrating.” “Most people that I would visit who were dying, were in the last five or six weeks of life normally. I constantly saw how poor communication massively impacted the end of life that somebody had.”  

Before training as an end-of-life doula, this experience led Emma to academic pursuits. She began studying for a master’s and Phd in health psychology, researching how people deal with death competency, the confidence and ability to deal with death and dying. “I found that end-of-life doulas were much more death competent than doctors and nurses,” she says. 

As medical professionals are restrained by time pressures, insufficient funding and professional regulations, Gloria says that doulas can fill the gap.  “What we bring is time,” she says. “I’ve sat in a multidisciplinary team meeting where there’s been a social worker, a district nurse and a palliative care nurse, and they’re all time and task-driven, and I get that completely.” 

“Doctors are trying to save lives. That’s their job,” says Alex. “So there can be a gap in them feeling comfortable to talk about death and dying, and support people to understand their illness journey. That could be talking about it being terminal, being honest with someone, it’s a wobbly, shaky ground.” 

In May 2022, Leeds became the first city in the UK to commission end of life doula support through the NHS. The feedback reported that ‘the involvement of an EoL doula reduced pressure on unpaid carers and on other health and social care professionals,’ highlighting the increase of ‘well being’ and ‘cost-effectiveness’ of end of life doulas ‘filling the gaps’ in the health and social care system. 

The same initiative is currently taking place in the London Borough of Richmond, operating through a scheme of self-referrals. 

Emma thinks that the fault isn’t just underfunding within health services. The issue lies within the assumption that the bureaucratic nature of these services can provide the “continuity of care” for those who are dying. She argues that the emphasis placed on physical and psychological symptom management overlooks the importance of social, spiritual and holistic styles of care. 

“I honestly don’t think that more services are the answer. People need some services; they need medical support. But the majority of what they need is coming from their communities, we need better joined-up care and communities. 

“Somebody just cannot have a good end-of-life experience without a full range of different services supporting them. We really need a radical rethink of what people need at the end of life,” she says.

Dr Marian Krawczyk, a lecturer in Health and Social Policy at the University of Glasgow has researched how end-of-life doulas could be integrated into public health services and makes a similar argument to Emma. ‘End of life doulas offer real potential. This is what dying people ask of us—to create and explore forms of care that are as diverse and dynamic as the lives that this care seeks to honour,’ writes Krawczyk

However, there are ‘problematic’ elements, notes Krawczyk. Framing doulas as ‘para-professional’ risks the danger of blindsiding formal aspects of professionalisation that are integral to the sphere of health and social care. It also runs the risk of casting doulas into the role of ‘women’s unpaid domestic labour.’ 

Alex says that there is a “grey area” in healthcare, and establishing “boundaries” is something she has learnt on the job. “I’m not a friend or family member,” she says. “We’re solo workers going out into people’s homes, into the community, into care homes, and so, we need to have our boundaries.

“You’re not just going to someone’s house to do their garden – not that there’s anything wrong with that. That’s hard work, I’ve done it. But you are helping someone because they’re dying or they’re mum is dying. It’s too easy to let the boundaries blur because you’re just doing something so sensitive.

“Otherwise you’re just rescuing them and you’re martyring yourself, you’re depleting yourself, and that is beneficial in the end to no one.”