Over mugs of tea in her Lewes office, Hermione Elliott is telling me about the first time she watched someone die. It was the 1950s in semi-rural South Wales, and an elderly neighbour, waving her stick to catch the postman’s eye, slipped in the street and fell. As a thin trickle of blood formed on her forehead, Elliott’s mother and other women gathered around. One woman pulled out a mirror and held it under the old lady’s nose to test for breath. She had died. “They weren’t fazed, panicked in any way. They just knew what to do. I don’t see that anymore. Of course it was shocking, but there was a familiarity with death, some level of skill.”
Elliott has made it her mission to retrieve society’s forgotten death know-how. More than 15 years ago, she founded the not-for-profit company Living Well Dying Well, which trains end-of-life doulas—people who befriend the dying, much as birth doulas at life’s other extremity guide women through childbirth. Among the end-of-life doulas-in-the-making studying its diploma course is former Green MP and leader Caroline Lucas.
A former midwife and palliative care nurse, Elliott is emphatically not anti-medicine. Yet she worries that we have slipped, almost by default, into an acceptance of clinical interventions that prolong life, but not “any quality of life”. The deaths of three loved ones reinforced her sense that, whatever makes a good death, for the very elderly and frail it is not undergoing chest compressions in a hospital ward.
Convinced that we could “do death better”, in 2007, she began holding public workshops. She realised: “Okay, people do actually want to talk about this.” She watched with interest the growing popularity of birth doulas, and later learned of end-of-life doulas doing similar work in America and Australia. “It was almost like the idea landed in several places at the same time and several of us picked it up and ran with it.
Two days after we meet, the announcement that the MP Kim Leadbeater will introduce a bill to give the terminally ill the right to end their life catapults dying into the limelight. Over email, Elliott says she is wary of a debate that has become so polarised. “We prefer to quietly do our thing.”
So, what is that thing? Much of it is practical. When someone wants to die at home, a doula will work with the palliative care team to help make that possible. Sometimes the focus is supporting the family. Go back a few generations and “there was usually a woman in the village who people would call on at a time of dying.” By stepping in as the capable neighbour, a doula can give the “confidence boost” that says to those struggling to care: you are not totally alone.
For some, the end of life is a last opportunity to make peace. “It’s almost as if there are certain emotions that people have to burn off,” Elliott says. Yet, when the dying are distressed, the clinical response is often to sedate. One time, Elliott was sitting with someone who was agitated but unable to say what was troubling them. “I said: ‘Would you like to tell me, in a whisper inside? Tell me inside.’ So, they whispered inside what it was they wanted to say. I had no idea what they were actually saying but the process of communicating what was troubling them somehow really seemed to help,” Elliott says. “They were witnessed even though they weren’t heard.”
Another time, Elliott was beside a woman who had been hovering between life and death for some weeks. The woman’s daughter was curious about Elliott’s background in midwifery. “I said: ‘Birth and death are very similar… ultimately, you must go into the experience. They are both about letting go.’” A few minutes later, they realised the woman’s breathing had changed. Then it stopped.
“In that moment she taught me that sometimes people don’t know how to die.” It was as if, she reflects, “I’d said something that she needed to hear.” Now, when people ask: “‘How do I die? What do I do?’ The best I can say is, well, when it comes, you let go. You just have to let go.”
