What is an End of Life Doula?
An end of life Doula is a supporter or companion who walks alongside people living with a life-limiting illness, their families and those who are important to them. They are a consistent flexible presence, able to fill the gaps and take on various roles in support – practically, emotionally and, if desired, spiritually. We like the term ‘a friend in death’ and for us this means we put the person who is dying and their family at the centre. 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. Having a Doula to walk alongside makes it possible to stay at home, but we also work in nursing homes and hospitals – it’s all about what you choose.
What do End of Life Doulas Do?
- 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 when families need
- 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 without fear or loneliness
- be practical and walk the dog, do some housework, prepare a meal or make cup of tea!
Where does the word Doula come from?
It is Greek for ‘woman of service’. Not all our 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 end of life.
What does the training involve?
Living Well Dying Well has pioneered the training of End of Life Doulas in Britain. All Doulas complete a 20-day training over 12-18 months (with additional supervised hands-on volunteering experience). The course is Quality Assured by Crossfield’s Institute. Doulas are not expected to take the place of health professionals, rather we work alongside them.
What sort of people become End of Life Doulas?
Doulas come from a whole range of backgrounds: housewives, carers, teachers, accountants, journalists, 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 feel comfortable with death and feel they have something to contribute.
How many of you are there?
As of today there are approximately 350 people who have been through our training and our numbers are growing with the network developing organically. There are about 100 of us who are in active practice at this current time. Some work as volunteers others are paid a fee for their work and this is arranged with each family. 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 up to a year, others in the final weeks. We may remain involved with a family 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?
Slowly our work is becoming known and until now we have relied on word of mouth; referral through our web site and individual Doulas promoting conversations, connections and making themselves known within their Communities.
What sort of organisation are you?
Living Well Dying Well is the training organisation and End of Life Doula UK is the membership organisation which people who have trained with LWDW join once they begin to work with people at End of Life. We are a not for profit organisations.
Our income is derived from training fees, membership fees, grants and awards from funding bodies and donations.
Are you involved in Assisted Dying?
All 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 actively support a person with assisted dying or euthanasia.
What else do you do?
Once trained, we go out into their Communities and develop our practice. As well as being ‘a friend in death’ to others they may also work in their communities to inform and empower people to exercise control and choice in Death and Dying. This work has included running events, festivals and seminars; hosting Death Cafes; running Seminars 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.
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All media enquiries and requests for articles, interviews etc contact details should be addressed to Lizzie Neville firstname.lastname@example.org 07825 795808 or Aly Dickinson email@example.com 07887 840663