End of life Doula: Meet the person who helps prepare someone for death

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A doula is most commonly associated with the start of someone’s life. Birth doulas are hired by expectant parents to provide practical and emotional support through pregnancy, labour, birth and straight after childbirth.

However, doulas can also be used by someone approaching the end of their life.

End of life doulas support a person who is dying as well as their family. The doula, not medically trained, is there to help talk through practical requirements or can just act as an “informed companion”.

Lizzie Neville, 44, from Salisbury has been a qualified doula with Living Well Dying Well for a year but essentially did the role of a doula for many years before in hospitals and hospices.

“Really what we’re doing is being fully present with them,” she tells The Independent. “Our time with them is devoted solely to them and nothing else. We are offering a compassionate presence to them. There are no boxes to tick, forms to fill, we are purely for them.”

Lizzie might be hired be someone as soon as they have been told they have a terminal illness, in other cases she might only be requested for the last week of their life.

Often Lizzie encourages her clients to do things they have never tried before, re-connect with an old friend, spend time doing a hobby they enjoy or visit a place that brings back fond memories. She recalls a time when a dying woman wanted to see the ocean for the last time, so a mobility vehicle was arranged and the family and Lizzie visited the seaside.

“We are trying to encourage people to live right up until the end,” she explains. “Death is hidden away now, it is sort of a medical procedure. This is a way of bringing it back and giving people ownership of it again.”

The jobs Lizzie has to do ranges from helping to facilitate difficult conversations between family members about what someone might like to do, wear or listen to in their final days to how much medical intervention the person wants (which is often laid out in the legal document of advanced directives).

“We lay it on the table, we are not advising them. We just say, 'here are the choices you’ve got'. Talking about these things is very difficult and a lot of people don’t like it but once it is done there is a relief it is all sorted and they can carry on living.”

Other duties might be just doing the washing up, walking the dog or going to doctors appointments.

“Other times it might just be sitting with a client and nothing is said,” Lizzie says. “You are just sitting and maybe holding a hand. You are just being fully present with them.”

Her clients range in ages and her youngest was in their forties which imaginably must make for a difficult and emotional experience.

“You don’t show emotion while with the client,” she says firmly. “A doula’s role is to remain grounded. We are the one constant through their journey.

“Afterwards, privately, sometimes it is very upsetting. If it is a really bad one sometimes you come home and you have to let it go. So yes, we do cry. I’ll go out in the garden and dig, I plant lots of seeds, flowers and vegetables. You deal with it – you have to let it go.”

Lizzie has been there several times when a person has died, either in the room or just in the house: “Some people want the security that somebody is about who knows what’s going on,” Lizzie explains.

After the client has passed, Lizzie may stay around a bit longer to support the family but she says this is dependent on their needs.

“Sometimes they might not want you to be around because they associate you with the death of your loved one, others might want you around a bit longer. You play to whatever the family want, it is not about us.”

Lizzie’s own view of death is undoubtedly much more accepting and peaceful than most people’s.

“It is a part of life, we are all going to die but I think it is nice if you can have a little bit more control about where and who is about when you die.”

While for many this would be a particularly difficult – and at times unpleasant job – Lizzie is adamant she loves it. Death can be thought of in such a scientific, medical and practical way whereas a doula is there to provide a break from that. They dedicate their time to that other person, some of whom have no close family or partners left, and work to make it meaningful. Then, when they are gone they are there to offer emotional and practical support to grieving family members.

“It’s a job I love... I’m so proud and honoured to do this job,” Lizzie says.