Doulas have become an increasingly normal part of childbirth. These hired assistants help expectant mothers, providing emotional and practical support in the lead-up to, during and after childbirth – including speaking up for the woman.
And now doulas are growing in popularity to support people through life’s other huge transition: dying.
While home carers support physical and medical needs such as making meals, providing personal care and giving medication, end-of-life doulas do not – instead they offer emotional, practical and even spiritual support.
Their role was brought to the public consciousness in April last year when former Green Party leader Caroline Lucas left Parliament to train as one.
Alexandra Hobbs, 60, a media lawyer from south-west London, remembered the MP’s new direction as her mother Meryl, 91, became increasingly frail.
‘I knew about Caroline Lucas so I looked it up online,’ says Alexandra.
‘My mother had been diagnosed with bladder cancer in lockdown and then she broke her hip. She was doubly incontinent and couldn’t get around. But she didn’t want to move into a care home.’
Meryl only lived ten minutes away, but with a 13-year-old son and a demanding job, Alexandra worried about the burden of caring for her alone.
Then she found Helen Jenner, an end-of-life doula and community nurse in her 60s who lived locally.
Alexandra with her mum, Meryl, who had been diagnosed with bladder cancer in lockdown and then broke her hip
Meryl needed round the clock care towards the end of her life, but did not want to be put into a nursing home
Alexandra recalls: ‘Helen didn’t talk about dying or cancer or anything like that. She was very much led by my mother – it was more like having a friend to visit. She’d do her nails, help her to work iPlayer to watch telly and just be alongside her, staying for around an hour and a half. She earned her trust.’
She adds: ‘Though, the first time she came over, Mum was really rude to Helen – she was always suspicious of anyone I brought to her house – but at the end of the meeting she said, ‘Okay, I quite like you’.’
After that, Helen came twice a week. ‘She’d make sure Mum was wearing a nice cardigan, spritz perfume on her wrists or help with grooming,’ says Alexandra.
‘Mum couldn’t move to do her hair anymore and it was getting matted. Helen told us about these shampoo caps you can buy online, which make the hair damp so that you can blow dry it.
‘That really cheered Mum up and it was the kind of extra touch that I wouldn’t have had time for, as I was doing all her food, laundry, toileting.’
Helen also provided emotional support. ‘Sometimes I’d be beside myself crying about Mum – and Helen would reassure me,’ says Alexandra.
‘It was such a pressure valve because you know your parent is dying, but there is still so much to do all the time. I could call Helen and talk about the terror, exhaustion and responsibility I felt, being stretched so thin – and also the sadness and dread of seeing Mum die,’ she explains.
Like many death doulas, Helen didn’t charge for her support.
Dr Emma Clare is a death doula helping people with administrative and emotional support as they reach the end of their lives
Former Green Party leader Caroline Lucas left Parliament in April last year to train as a death doula.
Emma Clare, 34, from York, runs the membership association End of Life Doula UK.
‘Many choose to volunteer their services, others charge an hourly rate of £25 to £35 on average,’ she says. ‘However, if longer periods of support are needed such as night sitting this will be adjusted and agreed with the person and their family.
‘Doulas may also offer stand-alone support with sorting out documentation [such as advance-care planning], which is usually a set cost for the whole process.’
A psychologist, Emma trained as an end-of-life doula in 2017 after working as a home carer for terminally ill people.
‘What I hadn’t realised when I took the job was how many people would be in the last weeks of life. It was a bit of a shock, but I found that I really enjoyed spending time with them,’ she says.
‘There’s a misconception that we’re somehow woo-woo or anti-medical, but actually a lot of us are, or have been, doctors, nurses and midwives.
‘We often describe our work as filling the gaps with a mixture of practical and emotional support.
‘Some people are struggling with the admin at the end of life – such as coordinating the different services, from palliative care to social workers, if someone is dying at home – others just need someone neutral to talk to. End-of-life doulas do not provide medical support or personal care such as washing,’ she emphasises. Instead, their training focuses on being able to talk about death, which Emma says can ‘reduce people’s fear and anxiety’.
‘I worked as a carer myself and this is definitely not something that carers receive, so often they have understandable difficulty speaking about this.’
There is clearly a need for more support – an estimated 1.5 million older people have unmet care needs, with the number projected to rise to 2.1 million by 2030, according to charity Age UK.
The deficit has a knock-on effect on GPs, with many being asked to undertake life admin for the elderly, and fielding calls from lonely patients and worried relatives. This might help to explain the steady rise in those contacting End of Life Doula UK since it was set up in 2018.
And now the NHS is trialling the use of end-of-life doulas for terminally ill patients.
A pilot scheme in Leeds overseen by NHS West Yorkshire Integrated Care Board ran from May 2022 to September 2024, allotting £50,000 to fund 1,500 hours of end-of-life doula support. ‘This ranged from just the last few days and hours of life, to people who received support for over two years,’ says Emma, who was one of the ten doulas on the scheme.
A similar project – but with less funding – ran between September 2023 and December 2024, across the London boroughs of Kingston and Richmond.
There is currently another scheme in Sutton and Merton, where End of Life Doula UK has been commissioned to provide 500 hours of free support over three months.
Results from the Leeds pilot show 85 per cent of people supported by a doula died in their preferred place. (The latest official figures show that, across England, just 53 per cent of people die in their place of choice, while research frequently points to a mismatch between the number who wish to die at home who actually do so.)
Tellingly, only 13 per cent of people receiving doula support had an unplanned admission to a hospital in the last 90 days of life – by contrast the most recent government figures show 61 per cent of people had at least one unplanned hospital admission in the last days of life.
Emily Heritage, a district nurse and the end-of-life, frailty and dementia lead for Kingston Hospital, referred ‘between 20 to 30’ patients to Kingston and Richmond pilot, which had 11 doulas working on it. While the results of the pilot won’t be published until later this month, Emily says ‘it was absolutely amazing’.
‘It definitely helped keep dying patients out of hospital when they didn’t need to be there. It had a particular impact on the nights – that’s often when families panic, especially if a loved one’s breathing is slowing.’ She adds while many carers are brilliant, they’re often young without much experience of death.
‘They might not know that gaps between breathing mean there isn’t long left, whereas death doesn’t frighten the end-of-life doulas,’ says Emily Heritage.
‘It makes such a difference to have someone around with that knowledge – it’s about making the transition as peaceful, dignified and pain-free as we can.’
However, the scheme hasn’t been recommissioned. ‘It’s difficult because it brought so much comfort and reassurance, but financially you can’t really quantify that,’ says Emily Heritage.
For Alexandra, having Helen on the end of the phone was invaluable in her mother’s final weeks.
‘Helen explained the stages of dying, which I hadn’t known about – becoming bedbound, sleeping more and the reduction in appetite,’ recalls Alexandra.
Meryl’s cancer came back in July 2024, after which Helen came more frequently – although by this point she had a full-time live-in carer too, costing more than £1,000 a week.
‘I found that I needed Helen more to talk to, at the end, as the dying process is drawn out and not what you expect,’ says Alexandra.
‘Helen and I talked about the spiritual side of death and the afterlife.’ Emma explains: ‘Not everyone wants spiritual support, but we can provide it.’
She trained with the organisation Living Well Dying Well – the only certified end-of-life doula training programme in the UK. It takes around two years and involves ‘a lot of case-study work and self-reflection about your own experience of bereavement and attitudes to death,’ she says.
Perhaps unsurprisingly, Emma’s job has made her more comfortable with dying herself.
‘It’s not always lovely, but the vast majority of deaths I’ve seen have been gentle,’ she says.
‘People have had the time to tie up loose ends and say what they want to say.’
Meryl, a former jewellery and garden designer who once worked for Vogue, died in her bed at home – just as she had hoped – on September 22 last year.
‘I was able to give her what she wanted,’ says Alexandra. ‘But that wouldn’t have been possible without a team around me.
‘After Mum died, I stayed with her and held her hand for about 12 hours. We got a glass of wine and her favourite pudding.
‘It wasn’t scary or medicalised and I’m so grateful for that. As my mother had said a few months previously, “If you are holding my hand. I will not be scared”.’
