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Death doula reveals what the dying fear most

Article By: Michaela Chirgwin

Death is the ultimate unknown and as an end of life doula, Aly Dickinson's hardest job is helping people with a terminal illness face the unknown and come to terms with the fragility of life.

She has found one of the biggest fears dying people have is that they are going to have to face pain. “They are also worried that things are going to happen to them – that they might cease to be a person.That they become an illness, or just a patient, and things are going to be done to them,” she says.

Credit: UMB-O

Their other big worry is they fear their illness or dying might be a burden on family and friends, and Ms Dickinson finds one of the most rewarding parts of the job is that she can help alleviate some of this. She says: “We can release family from some of the ‘grotty bits’ and let them focus on the ‘quality bits’ of being with the person.”

Many people will be familiar with the role of a birth doula - a person that helps a mother prepare for the birth of her baby. However, the death doula is becoming increasingly in demand due to the pressures of the NHS and adult care system.

Death doulas are often seen as an end-of-life ‘guardian angel’. Somebody who can take care of the final worries and arrangements of someone nearing death - helping them to navigate that final journey in life.

In fact, the job of end-of-life doula is quite a practical one and is a mixture of care worker, counsellor, errand runner, friend, life coach, and much more.

Ms Dickinson quit her job as an HR director four years ago to become a death doula after reading an article in the national press. She says: “I’d been an HR director for thirty years, and I was ‘soul sick’, although I didn’t really know it at the time.”

‘My mother was a great role model for dying’

Around this time, her mother had been very ill, and when she passed away, her way of dying was an inspiration to her daughter.

Ms Dickinson explains: “I was with my mother who had a long dying really, and I think she showed me how it could be done. She was such a great role model. She knew what she wanted, she knew how she wanted it to be, and she told me, and I could then support her.”

The ex-HR director knew that she wanted to help other people in the way that she’d helped her Mum. She says: “About four years ago, I saw an article in the Guardian, about end of life doulas, and it was like a lightbulb went off, and I thought, ‘Yes! That’s what I want to do’."

“So, then I did lots of Googling and researching about how you could train to do this work, and I came across the organisation Living Well, Dying Well. I spoke to the director, Hermione Elliott on the phone and she explained what the training and what the work involved was, and I signed up for the training.

Living Well, Dying Well is the only industry body that trains end of life doulas with an externally certified qualification, for quality assurance, something which was key for Ms Dickinson. She explained it was “massively important when I started thinking how I wanted to do this, as you are working with vulnerable people.”


Crisis in social care means doulas are becoming carers too

An end of life doula is a very unusual role and requires a varied skill set. Ms Dickinson says: “It really varies tremendously depending on the individual.

“We establish a relationship that is entirely person-centred. So, we don’t go in with a set list saying we do this and that. We spend a lot of time trying to find out what the person would like; and for the people around them as well.”

The role is adapted from when the doula is first paired with a client, to when they are very ill and then a different approach is required. Ms Dickinson clarifies: “So, for me, I’ll do anything for them that’s helpful really. In the early days it's anything from the absolute mundane; from helping shopping to walking the dog.

"Then there’s sitting and talking and getting to know the person; find out what their concerns are, what their fears are. And then as things progress, which they do, I can be there for them a lot more.”

It’s a service that’s becoming very much in demand, partially due to pressures on the NHS and social care. Ms Dickinson explains: “Because health and social care services are really stretched, increasingly we are finding that we are helping the person navigate social and health care to get them the support they need – financially and practically”.

It also means that many end-of-life doulas will also do personal care as well. They can work at a person’s home or a care home. Some doulas specialise in helping dementia patients and will work with homes that specialise in looking after dementia patients.

'I like helping people map out how they want their death to be'

For Ms Dickinson, her favourite part of the job, and something that she is well known for in the community is the practical part and perhaps not too far away from her original career as an HR director. She says: “I really like helping people map out how they want their death to be, and then supporting them – not just having it written on a bit of paper. Helping to make things happen”.

Birth doulas often help an expectant mother put together a birth plan, which may or may not go as it should, depending on the actual circumstances of the birth. In a similar way, a death doula will help an individual plan for their death – although they don’t specifically call it a ‘death plan’.

Ms Dickinson explains some of the things that they can help with: “We talk to a person to find out what they would like and what they wouldn’t like for their dying. For example, planning the place where they would like to die, or whether they want a do-not-resuscitate order (DNR).”

“Sometimes there may be rows that have gone on in the family; unresolved issues. You can help people to say what they need to each other; with things they need to say, like ‘I forgive you', or ‘I love you’.

Some doulas have more involvement in spiritual matters, depending on whether that client has certain beliefs or not. Ms Dickenson says she will try her best to support an individual with their belief systems, although it is at the original consultation stage, when a doula is chosen that a spiritual doula is likely to be chosen for a religious client.

“There are doulas in our network that are very spiritually inclined, so they will work with people on that basis. There are other people who are not spiritually inclined, who are not going to want to go there at all.”


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Jeannie Bunt

Jeannie Bunt

05 Mar 2018 9:06 PM

Thank you so much for this article ... I've been searching for the direction I want to take in my care work, and I knew I wanted to do end of life care but didn't know there was such a thing as a death doula. My daughter is training to be a birth doula - she says we will be the 'bookends of life'. JB