End-of-Life Doulas: Providing practical and emotional support to people living with life-limiting illness and their families

Anna Lyons is an end-of-life doula in London UK; here she explains the background to her longer article in the March/April issue of the European Journal of Palliative Care.

Anna Lyons

The profession of end-of-life doula is still very new. The reason for this is very, very old. We fear death. We don’t like to talk about it. The problem is that we need to talk about it. I’ve been doing this long enough to know that people want to talk about it. They just don’t know how.

Just as a birth doula provides support and guidance to mothers-to-be at the start of life, end-of-life doulas provide practical and emotional support to people living with life-limiting illness and their families at the end.

I will take children to the park, and I will help answer their questions. I can help create memory boxes or walk the dog. I will help keep the house clean and cook comforting food: I know it’s the last thing anyone will be thinking about but everyone will need it.

I will work on Advance Care Planning and Directives. I’ll be there to liaise with the medical team and help translate medical jargon. I will ask doctors those forgotten questions in overwhelming medical meetings. I will interact with care agencies and hospices. I will facilitate those difficult and necessary conversations with loved ones. And when the moment comes and goes, I’m there for the bereaved. I can help with funeral arrangements and if someone wants to keep their loved one at home after they’ve died, I can support them to do this too.

Sometimes I will only work with patients. At other times I will only work with family and friends, supporting them and giving them the confidence and strength to care for their loved one. The end-of-life doula role is very flexible. It’s centred around people and tailored to individuals. I won’t ever push my own agenda. I will discuss their needs and my ability to meet them. I will find out what is important to my clients. I will ask, ‘What do you want and need?’.

I will listen. Really listen. Sometimes I won’t be able to do everything myself, but I will always try to find a way to get it done.

Being a doula isn’t about any of the big things. In fact, grand gestures can be entirely out of place: It’s the simplicity of people who care – reaching out to people in need. It’s the trust to remain in the process until the end. It’s that warm smile, that sharing of a silence or a favourite song. All of these small things can help forge a path to find acceptance of the life ebbing away and can offer strength and fortitude for the necessary quiet letting go.

Doulas walk alongside and bear witness to the experience. We will never tell people what to do at the end of their life, we are only there to help them live it.

If you would like more information about my work as an end-of-life doula, please email me or leave a comment at the end of the blog post.

 

Read the full article in the European Journal of Palliative Care
This post relates to the longer article, ‘End-of-life doulas: what we can offer at the most difficult time of life’, by Anna Lyons published in the March/April edition of the European Journal of Palliative Care (EJPC) 2018; 25 (2).

If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog.

 

This entry was posted in EAPC-LINKED JOURNALS, European Journal of Palliative Care and tagged . Bookmark the permalink.

2 Responses to End-of-Life Doulas: Providing practical and emotional support to people living with life-limiting illness and their families

  1. Anne says:

    Hi Anna, I very much agree with all you say and am very interested in the death doula role. Would you mind me asking how you receive a salary? Are there enlightened health departments out there in the UK who fund such important work or are you sort of freelance?

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