I recognised a huge gap in care of the dying and need for the doula role, says Hermione Elliott
When I tell people I am a doula for the dying, I’m met with either bright eyes and complete recognition: “Oh yes, I wish I’d had one of those when my mum/dad/husband died” or, in contrast, some confusion: “Why do we need doulas? Isn’t that what hospices do?”
In response to the second reply, I tell people that hospices do a fabulous job. The level of care and symptom control is usually excellent. However, only 5-6% of people die in a hospice.
I first became interested in the possibility of death doulas as opposed to birth doulas when I heard the term amicus mortis (a friend in death). It touched something deep within me and, as a former palliative care nurse, I recognised a huge gap and need for this role. It’s as if my internal sat nav became set to take this direction. In 2005, prompted by three deaths close to home, I began to change my practice and at the same time develop training for people wanting to become doulas for the dying.
“We have time to be with the whole family bringing continuity”
The best way of describing what we do is to say it’s a role where we walk alongside. We have time to be with the whole family bringing continuity and we are a consistent loving and compassionate presence. We provide back-up and add confidence to families encouraging their participation, or sometimes facilitate difficult conversations. We offer information, we bring trust to process and hold the awareness of the profound and mysterious journey that death is.
If needed, we uphold and advocate for the dignity and wishes of all involved, sometimes coordinating and drawing on all the resources in the family’s social network; we may liaise with other professionals or support people in simple, ordinary ways to maintain a sense of normality - of a life lived, right to the end.
Doulas have a non-medical and non-denominational role. Through this work I’ve seen that many families have never met anyone who is dying, witnessed a death or seen a dead body. They feel unprepared and it creates a lot of fear and uncertainty. Since the majority of deaths happen in hospitals (more than 60%), people imagine that death is a medical event and not a human one, as it used to be. So it is natural for people to look to the medical and nursing professions for all the answers and for the emotional, psychological and spiritual support they need. This places a huge demand on hospital staff, which is unrealistic and can cause a lot of distress on both sides.
For me death is natural and normal and, if well handled, can be the fulfilment of a life. It is an exceptional nurse or doctor who feels comfortable entering the emotional or spiritual terrain required to engage with people to help them face up to death or to prepare for it, with the aim of creating the best conditions possible for a good death. This is where doulas can come in.
I am heartened that report after report in recent years has highlighted the need for a companionship/advocate/mentorship role such as this, perhaps easing the pain of loneliness or the inner distress of an unreconciled life or fear of the unknown or what lies ahead. The role is not to replace medical and nursing care but to complement it.
One of the aims of Living Well, Dying Well, the charity we set up to further this work, is to foster communities of people who feel comfortable around the subject of death and are more prepared for it, ultimately to make sure those who would like to die at home (surveys suggest 70% of us) can. Perhaps, we may even see doulas in every neighbourhood, hospital, hospice and nursing home.
Hermione Elliott is director of Living Well, Dying Well