Meet the death doulas: the women who stay by your side to the end

They are not medical experts, but they work alongside NHS staff in hospices or the community to help patients take control over their final days.

In the upstairs room of Blighty Coffee in north London, two women greet their guests as they file in with cups of tea or glasses of wine. On each table are menus, with delicate morsels of suggested topics for the evening ahead. "What things make for a good death?" reads one. "Can you prepare for death and dying?" says another.

As a joint host of the "death cafe", a monthly event aimed at breaking taboos on the issue, Caroline Dent tells her 20-strong audience in Finsbury Park of her belief that dying has become "over_medicalized". "We've lost control of one of the most significant events we'll ever have to face."

She and her colleague, Liz Wong, are among a tiny but growing number of people in Britain trained as end-of-life or death doulas, a concept akin to traditional childbirth doulas but at a very different time of life.

There are at least 100 end-of-life doulas in Britain, according to Living Well Dying Well(LWDW), an East Sussex-based organisation that trains doulas and has organized the London death cafe's fifth such event. They are not medical experts, but often work alongside NHS professionals in hospices or in the community to help the dying and their families live their last days as meaningfully and with as much control as possible.

That there is a market for such personal care is in little doubt: research published in January this year by the British Medical Association identified not being able to choose where final days were spent or care is provided, as a key concern. 

Most commonly, death doulas come from nursing, palliative care or social work backgrounds, as well as those who have worked as carers. All but a handful on the books of LWDW are women.

For Wong, 37, personal trainer from north London, the decision to become a doula began with the death of her best friend four years ago. "Her unexpected death, in India, really shook my world and it made me very fearful of death," says Wong. "I began reading about it and went along to a death cafe in Hamstead where I met Caroline, who told me about the doula course." 

Wong, whose elderly parents are from China, says part of her motivation was to support her parents and help them plan for death. "Actually," she smiles, "One of my friends told me I was always a bit obsessed with death."

She now gives talks on advanced care planning in London's Chinese community, where discussing death is taboo, and is helping a client whose husband recently died, in addition to her day job in a gym. Her clients come via word of mouth, or through social media. "We're all figuring out the doula role," she says. "I see a hole in the NHS where we could fit in."

GPs, for instance, often don't have time to properly discuss "advanced care planning directives", legal documents that incorporate a patient's last wishes concerning medical treatment.

Hermione Elliott, a former nurse, midwife and counselor and director of LWDW defines the role as an "amicus mordis", meaning a "friend in death". "Amicus mortis has a beautiful ring to it, "she says. "Who wouldn't want to have someone special for them who was consistent and present?"

The UK ranks as the best place in the world to die, according to a survey last year, a testament to the integration of palliative care into the NHS and a strong hospice movement, mainly funded by charities. But Elliott believes it still has a way to go. She cites research from the Dying Mattes coalition showing that while 70% of people would prefer to die at home, about 50% die in hospital.

The needs of the dying, or even the fact that they are dying, can often be missed in a busy ward, Elliott says. "Their medical needs are met, but there is a lot more going on for someone than just managing their symptoms. A doula has the luxury of being present consistently, whereas many health professionals dip in and out. You can often pick up on language, for instance people  start to talk in a metaphysical way, about going on a journey. Most people in palliative care will also recognize these signs."

For Teresa Letimier, a nurse and palliative care specialist from Fordham in Cambridgeshire, the key driver to become a doula was witnessing loneliness among dying patients.

Letimier says: "I used to see a lot of patients who were alone, either with no family or with family living far away and I could see the need for someone to be with them. People fear dying along. There's a lot of loneliness in society now. People are more isolated and living longer."

The most rewarding part of her work is empowering the dying, or allowing them or their family's last wishes to be granted. In the children's hospice where she worked, close attention was paid to this, she said. For instance, she cites the case of a mother who took her dying baby outside to experience snow for the first time, or the boy who, despite his grave illness, was allowed a stockcar racing trip. She feels more attention should be paid to the last wishes of adults.

"Nobody wants to die," says Letimier. "But it can be about giving permission to express what is worrying them. Many fear too much medication or not enough. It is very persona;. If people are younger, with children, you can talk about making memory boxes. It's about allowing them to live life the best way they can with an illness."