What is an End of Life Doula?
An End of Life Doula is a supporter or companion who accompanies people living with a life-limiting illness, their families and those who are important to them. We are a consistent, flexible presence, able to take on various roles in supporting practical, emotional and, if desired, spiritual needs. We like the term ‘a friend in death’, and for us this means we put the person who is dying, their family and their close network at the centre of everything we do. We work in an open-hearted way to create an atmosphere of loving support, kindness, respect, dignity and normality for all concerned. We aim to help people feel safer and more at peace with death and dying, giving guidance, confidence and support in any way it is needed. EoL Doula support can make it possible for the person who is dying to stay at home if this is their preference, but we also work in care homes, hospices and hospitals.
What do End of Life Doulas do?
The type of support depends on the individual Doula, however in general Doulas can:
- Guide people through all the decisions and choices that need to be made at the end of life
- Be a point of contact for other services and kinds of support
- Be an advocate
- Coordinate personal visits
- Organise offers of help such as giving family carers a break
- Take time to sit with the dying person, to hold the space
- Have conversations so death is approached with reduced fear or loneliness
- Accompany the person to appointments to assist them in understanding their options and getting the information they need to make informed decisions
- Be practical and walk the dog, do some housework, prepare a meal or make a cup of tea!
Where does the word Doula come from?
Historically the word is Greek for ‘woman of service’, however today the term is much broader and not all Doulas are women. The word Doula came into common parlance with the growth of Birth Doulas – a person who gives support, help, and advice during pregnancy and during and after the birth. For us, we are that person at the other ‘bookend’ of life.
What does the training involve?
Living Well Dying Well pioneered the training of End of Life Doulas in the UK. Click here to go to their website. All Doulas complete a 21-day training over a minimum of around 18 months (with additional supervised hands-on experience). The course is Quality Assured by Crossfield’s Institute.
What sort of people become End of Life Doulas?
Doulas come from a whole range of backgrounds: carers, teachers, accountants, journalists to name a few. Some may already have experience in palliative care, others may have a therapeutic or counselling background; others have worked in a corporate environment and so on. All are drawn to this work because they are comfortable with death and dying and feel they have something to contribute.
How many of you are there?
As of today there are approximately 1000 people who have been through the Living Well Dying Well training and our numbers are growing rapidly. As a community of practice we currently have around 300 Members and this is growing monthly. Some work as volunteers, others are paid a fee for their work, and this is arranged with each person they support
At what point do you start to support people?
We are called at any time from the point of diagnosis of a life limiting illness up to the final days. Some Doulas have accompanied a person for a number of years, others just in the final weeks. We may remain involved with those close to the person for weeks or months after the death if it will bring benefit and support them through the early days of bereavement.
How do people get to hear about you?
Our Doulas spend time in their Communities talking to individuals and groups to raise awareness. Increasingly we are becoming recognised by care homes, hospices and hospitals as a resource that can be called upon and in some areas we are NHS commissioned. We are always very happy to present or talk to community groups and health and social care professionals so please complete our contact form if you would like to arrange this.
What sort of organisation are you?
We are a Community Interest Company (CIC) and a membership body. We are a not-for-profit organisation and the majority of our income is derived from grants and awards from funding bodies, donations and membership fees
Are you involved in Assisted Dying?
All of our Doulas work within our Code of Practice, which includes working within the law. In this country as the law currently stands, assisted dying and euthanasia are illegal. Doulas will always respect an individual’s views and choices and while they may be involved in supporting people during the final phase, they would not be able to practically support a person with assisted dying or euthanasia.
What else do you do?
Once trained, we go out into our communities and develop our practice. As well as being ‘a friend in death’ to others we may also work in their communities to inform and empower people to exercise control and choice in death and dying. This work can include running events, festivals and seminars; hosting Death Cafes; running community engagement workshops on topics such as Advance Planning for End of Life; Caring for a Dying Person at Home and so on. We are passionate about supporting people to take ownership of death, so we take our role in increasing understanding and awareness of what choice and control can be exercised, very seriously.
We also disseminate information though Newsletters and host a Facebook page with topical and interesting information.
How can I find out more information?