Just as midwives and doulas help bring life into the world, it makes perfect sense that there should be people to help and support us leave it, says Felicity Warner, the founder of the award-winning Soul Midwives, a movement to make dying a better experience.
A recent report commissioned by Co-op Funeralcare underlined how opening up conversations about dying is an opportunity to reduce the emotional burden, social isolation and unspoken fears of people who are bereaved or facing death.
Ever since Felicity started volunteering at a hospice, 25 years ago, she has made it her goal to support those facing death. “I spent many hours sitting with people who were dying – particularly those with no family or friends to visit them,” she says.
“I realised many people facing death felt frightened and isolated. While clinical care can take care of a lot, tenderness and human touch is often missing.”
Felicity’s background is complementary medicine and she found that massage, essential oils, music and creative visualisations helped to soothe and reassure patients.
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Hospice staff also noticed a difference, so Felicity began informally training them before officially starting Soul Midwives.
“The work is not aligned with any particular faith or religion,” says Felicity.
“Patients are called friends from the point of diagnosis. We advise them of their choices and help work on an end-of-life plan. This often enables people to really enjoy life until their health deteriorates.”
At this point Felicity and her team offer holistic support and gentle therapies to complement the clinical care. At the end of life, they offer to sit at the bedside.
“We dim the lights, play gentle music and hold their hand gently – being there until the end,” says Felicity.
“Everyone I work with is treated with the same the level of love I would give to a dying member of my family.”
Caroline Roberts, 55, from Surrey, knows this from personal experience.
“I heard about Soul Midwifery in 2017 and it changed my life,” she says.
“My mum, Diane, had been diagnosed with a complicated form of Parkinson’s (Progressive Supranuclear Palsy) the previous year and then had a major stroke. It seemed like divine intervention when I found that Krista Hughes, who ran the course, (krista.soulmidwife.org.uk) lived nearby,” says Caroline.
Krista began visiting Diane every week, building a relationship and discussing her end-of-life wishes.
Diane wanted to stay at home to die so the palliative care team, community nurses and health-care assistants cared for her physical needs, while Krista looked after her emotionally and spiritually.
Diane, 76, slipped into unconsciousness in June 2019 and, because Krista was on holiday, she arranged for her colleague Yvonne to step in.
“Thanks to them I knew exactly what to expect,” says Caroline.
“A week later as mum drew her last breath, my dad, Alan, and I were by her bedside, holding her hands. It was very calm and peaceful.”
Yvonne then helped Caroline wash and dress Diane, in readiness for the undertaker.
End-of-life doulas work in a similar way to soul midwives. But the training is quite different, explains Emma Clare, 31, who has a degree in psychology and worked as a carer before becoming a doula four years ago after training with Living Well, Dying Well (lwdwtraining.uk).
As well as supporting those with a terminal diagnosis, doulas work with elderly people and those living with dementia.
“We are there at any stage – from the beginning when a person is told they have a terminal illness through to the final months and weeks, and beyond to funeral planning,” says Emma.
The arrival of Covid meant unwelcome changes for both services as they weren’t recognised as key workers.
“We had to think outside the box and got to grips with Zoom, Skype and FaceTime so we could continue to be a listening ear and comfort loved ones,” says Felicity.
End-of-life doulas continued to offer face-to-face support wherever possible but also switched to remote support and set up a 24-hour helpline (eol-doula.uk).
Referrals increased by a whopping 53 per cent.
“Pre-pandemic, we usually received referrals at diagnosis, so we had months to get to know the person and their relatives,” says Emma.
“But because health and care services were so stretched, we received calls right at the end of life, asking for help.”
Both doulas and soul midwives educate people on the dying process and what to expect. Midwives tend to have a more spiritual and therapeutic role while doulas fill gaps and offer specific support depending on the situation, explains Emma.
Support can be anything from making the bed and walking the dog to helping to navigate through the labyrinth of health, social care and government agencies, and making funeral arrangements.
Overstretched NHS services are far more open to collaborative working and now end-of-life doulas have received funding to officially work alongside NHS trusts.
As part of a pilot scheme, every NHS community hospital in Dorset is now offered end-of-life support.
“Ensuring people feel special and loved until the very last breath is what we hope to achieve” says Felicity.
“If we manage to help one person experience a better death, it’s all worth it.”
