‘I’ve no idea what happens when you die – but often it’s magical’

Aly Dickinson is a death doula who provides end of life support to people who are dying and their loved ones
Aly Dickinson is a death doula who provides end of life support to people who are dying and their loved ones - Dale Cherry

When Aly Dickinson is dying, she wants to be at home, watching her favourite box sets, eating and drinking exactly what she likes, with the odd visit from a good friend. “I don’t want a lot of people around me,” she says. “I want to have space to get on with it.”

Like most of us, Dickinson used to avoid contemplating death, particularly her own. But when she gave up her job as an HR director to become a death doula, supporting the dying, the D-word lost its stigma.

“I learnt that death isn’t a drama, or at least it doesn’t have to be,” she says. “It’s perfectly normal and natural and I’m no longer frightened in any way. I still have no idea what happens when you die but, in the majority of times it is very gentle – and so incredibly magical.”

Dickinson is not alone in this choice of unusual career path. This week, the Green Party MP Caroline Lucas announced that she too is training to become an end-of-life doula, or death doula, now that she is taking a break from politics.

There are less intense ways, one would imagine, to fill a career break from politics but Lucas, who over the past five years has lost her father, Peter, and mother, Valerie, is determined to help the dying and their families. “In the UK and the West in general we are rubbish at dealing with and talking about death,” she said. “It is the last taboo.”

Dickinson, who is one of the founders of End of Life Doula UK (eol-doula.uk), a membership association for death doulas, agrees that we need to get more death-savvy.

Her job title earns her some funny looks, she says, but that’s only because most people don’t know what a death doula is or what a difference they can make to the experience of bereavement.

Former Green Party MP Caroline Lucas; 'We are rubbish at dealing with and talking about death'
Former Green Party MP Caroline Lucas; 'We are rubbish at dealing with and talking about death' - Andrew Crowley

The word doula derives from a Greek word meaning servant or caregiver and is more commonly associated with birth; birthing doulas are non-clinical companions guiding pregnant women through labour and new motherhood.

Death doulas, who undergo a two-year training through Living Will, Dying Well (eol-doula.uk/our-training), do the same for the dying and their families, counselling them after a terminal diagnosis, answering practical questions about what happens when you die and keeping vigil at their deathbed to allow their loved ones to rest.

Dickinson will even help prepare their dead body and be there for the family for six weeks after the death, helping with “sadmin” and supporting them in their grief.

She first read about it in a newspaper and immediately knew she wanted to train. “It’s tremendously rewarding; when you’re with somebody who is coming towards the end of their life, everything that is peripheral drops away and they confide in you about their life and their hopes and fears for dying,” she says.

“Sometimes we’re called at the very final stages but if we have the opportunity, we’ll help make a plan for their death, which can be therapeutic for them but also for their loved ones.”

Louise Piper, who switched from a career in finance to found Better Endings, an end-of-life doula provider, after her mother died (betterendings.co.uk), believes that during the early stages with each client she is akin to being an NCT teacher.

“When my mother was given 12 weeks to live, I didn’t know what to say to someone who was dying and I didn’t know that her body could stay in her house for a day after her death rather than being whisked away in a black bag four hours later. If I’d been more prepared, I’d have felt less raw afterwards,” she says.

She encourages her clients to compile a folder containing instructions for their death – what they want to wear, any music – along with documents such as wills and financial details, letters for loved ones and online passwords. “You don’t have to call it a death folder; I call mine my ‘When I’m not here folder’,” she explains. “It’s so helpful to have all your documents in one place and to have tidied up your digital legacy. It removes a lot of the stress of the dying process.”

Unlike a birthing doula, who has a specific due date to work to, a death doula’s remit is more open ended; Penny Merrett, a former counsellor who is now director of End of Life Doula UK, works with her clients for anything from a few weeks to a couple of years before their death. During initial conversations, which tend to be over the phone or a video call, she’ll offer practical advice – but in almost all cases her clients will soon want to talk about death.

“We don’t like to think about death until we’re dying and then we can’t stop ourselves,” she says. “This is why End of Life Doula UK runs death cafés for people to come and talk to others in the same situation. Contemplating death becomes easier the more you do it. People come back again and again – it’s not something you can just talk about once.”

These are difficult conversations, though; death doulas are trained to talk helpfully and reassuringly, without saying the wrong thing. “There are things you can say that are helpful after a terminal diagnosis and some that aren’t; you want to help take the fear away from dying but you need to take your cue from your client rather than trying to offer a solution,” explains Piper. “People will often say something like ‘my friend found that hydrotherapy really helped’ when a better approach is ‘I’m really sorry, how can I help?’.”

Navigating heated family dynamics also goes with the job. For the most part loved ones behave beautifully, Dickinson explains, but sometimes the stress and grief gets to them. “I remind them that this is their chance to do their best, to do it well, it is not the time for conflict,” she says. Piper has mediated reconciliation between family members with unresolved issues around the deathbed. “I helped them talk it through and both sides reached some kind of closure,” she explains.

The more deaths you support, the better prepared you are to face the unexpected, Dickinson says, as no two deaths are the same. Doulas only take on between two and four clients at once, being mindful of timings to make sure they can be there at the end with each one of them.  “It suddenly becomes intense; you have to be able to be flexible and step in and step out,” she says.

While all her work is poignant, it is particularly challenging with younger clients, particularly those with small children. “Their loss is incredible: they are not going to see their child growing up or do any of the things they wanted to do with them; I try to talk through what is scaring them and make sure we’re supporting the children, too, linking them with organisations that work with bereaved youngsters,” she continues.

Death doulas are not religious or spiritual but are guided by the beliefs of their client. Dickinson makes sure she’s always familiar with her client’s faith or spirituality before she starts working with them and will happily work alongside religious or spiritual figures. “Our job is to integrate with everyone around – which means being sensitive and astute,” she says.

Often her clients will say they’re not spiritual yet as death approaches will want to explore particular paths. “I listen and I learn from them; if they want to dip their toes in the sea, I’ll do everything I can to make that happen,” she says.

Managing pain is another element of a death doulas role. While they’re not medical (although some are trained carers), they will be in close contact with doctors and nurses to ensure that their client is comfortable – suffering, according to Dickinson, is one of her client’s biggest fears.

She explains how clients have pleaded for an assisted death, which is of course illegal in this country, and bemoaned the fact that they didn’t book into Dignitas in Switzerland while they were still mobile. “Every death doula will have a different view on assisted dying laws; mine is that if it could be a truly autonomous act then it would be wonderful,” she says.

“The loss of independence can be insufferable for people as is the confusion and distress accompanying dementia.”

Aly Dickinson
A death doula must be both sensitive and astute, says Aly Dickinson - Dale Cherry

One of the most common questions she’s asked by both clients and family members is, how long do I have left? Impossible to answer, of course, although death doulas come accustomed to the signs of ordinary dying and will explain them to their client and the family so nothing is a shock. “We describe the breathing changes, the sleepiness, the fact that when you’re about to die you stop eating and drinking and your skin tone changes,” Dickinson says.

As death approaches, clients will often start speaking metaphorically: they’ll tell her they’re packing their bags or catching a train. When the moment arrives and their breathing stops, there’s often a sense of calm and stillness in the room, she says.

“Sometimes the temperature changes and there’s absolute stillness; sometimes I feel the person is still around, as if they haven’t quite gone yet.”

She doesn’t like to talk about giving someone a “good death” as she feels it puts pressure on relatives who might feel they’ve failed – the sad fact is that death is not always painless, she says. “Our job is to facilitate the best death possible; to make it peaceful and dignified and to respect the wishes of the dying.” When a death goes well, the whole family feels a sense of achievement, she continues, which helps them with their grief.

It’s this sense of doing the very best for the dying that motivates death doulas rather than any financial reward. Once Caroline Lucas has completed the two-year training, she can charge around £30 an hour for her work, although some death doulas decide to work voluntarily in the community to ensure no one has to die alone. Dickinson says she doesn’t charge the family for her time during the six weeks after the death; “I don’t have the heart to”, she says.

The writer and broadcaster Adrian Chiles recently wrote, “If witnessing someone coming into the world is a privilege then it’s surely not a great stretch to feel the same way about being there when someone leaves the world at the other end of their lives.”

A privilege is how Dickinson regards her work as a death doula. After a client has died, she goes home, watches box sets, eats chocolate and has a good cry. “It’s like finishing a very lovely book,” she says. “It’s still up there on the shelf, but it’s finished.”