Introduction

I first met the wonderful Aly Dickenson back in 2022 when I wanted to learn more about the role of EoL Doulas. Talking with Aly resulted in the podcast The role of End of Life Doulas in Advance Care Planning and a valued connection.

Aly’s passion for Advance Care Planning is at the heart of her work; in this blog Aly describes her role as an EoL Doula and how she supports Advance Care Planning. Aly closes the blog with a powerful message calling for death and dying to be re-established in the heart of communities.

Thank you, Aly.

Clare: Hi Aly, thank you for writing this blog, can we start with an introduction to you and your role as an EoL Doula?

Aly: The first question I was asked by Clare Fuller to do this blog was ‘can you tell me about yourself’. In the role of End of Life Doula it is never about us and always about the person we are supporting and those close to them. Having said that sitting at my desk on my laptop in East Devon, in my two up two down with two cats, today I am struggling to get a big dented ego under control. As the Co - Founder of End of Life Doula UK https://eol-doula.uk/ I was interviewed by a journalist from the Telegraph about what we do. I am now looking at some of the comments from their readership which say things like ‘flaky’, ‘sanctimonious’ and ‘she gives me the heebie jeebies’. Do I mind? Yes! I care because I believe that the End of Life Doula movement (not me as an individual) makes a real positive difference to the experience of death and dying - that we can be alongside a person to enable they live the best life possible until that very last breath. So thank you Clare for the opportunity to speak up for the role and put my sweary, ego driven reactions to the personal comments to one side.

Clare: How do EoL Doulas fit into the healthcare system?

Aly: We are never ‘professionals’ or ‘experts.’ Instead we collaborate with health and social care professionals so that the absolute focus is on the person who is dying; freed from avoidable distress and discomfort; with their wishes, preferences and choices at the heart of all we do. We work in a person’s home, hospitals, care homes and hospices. We fill in the gaps in underfunded and overstretched health and social care systems. This is sometimes funded by the NHS (an increasing trend) but mostly by way of people paying for themselves or in some case through subsidised support or volunteer effort if they have limited funds

Clare: Can you talk me through the role of an EoL Doula please

Aly: You can see more on our website about what we do but to summarise we can

· Be an advocate when your wishes need to be upheld

· Open up conversations so death is approached with reduced fear or loneliness

· Advance Planning for end of life – assistance to discuss and record your wishes and preferences

· Help you and those close to you find your way around the health and social care services in your area

· Support important decisions and choices such as where you would want to die, how you would want to be cared for, and by who

· Be practical – run errands, do some housework, prepare a meal

· Act as a point of contact and coordinator for other services

· Support people in their home on an ongoing basis, and regularly work alongside other health and social care professionals in hospitals, hospices, care and nursing homes

· Organise offers of help and respite to allow unpaid carers to rest

· Take time to sit with the dying person, to ‘hold the space’

· Guide and support through the formalities after a death including registration and funeral planning

· Continue to provide emotional support for the bereaved after death

As well as providing one on one support, our aim is to bring dying ‘home’ in our communities as we believe it is all of our business and not the sole preserve of experts and professionals. We work in our communities in many ways, including providing information and guidance, facilitating workshops on caring for a person at end of life and planning for end of life.

Clare: How do EoL Doulas support people with Advance Care Planning?

Aly: Advance Planning for End of Life is the foundation of much of what we do. When a person reaches out to us for support, wherever possible, we build a trusting relationship. This is done by tender and in depth conversations to understand the life they have lived; their values and beliefs, their likes and dislike; who and what is important to them; how they want to be cared for and where. The conversation on its own is key to making sure that what we do is totally person centred but it also means we can provide them with the support they need to write an Advance Decision to Refuse Treatment, to establish their Lasting Power of Attorney for Health and Welfare and Property and Finance; to communicate with their medics on what they would want on their medical records about care and treatments at end of life. With this in place we can advocate on the person’s behalf to make sure their wishes and preferences are respected. This is the point where I can express gratitude to Clare Fuller for all she has done to further educate End of Life Doulas on the legalities of planning for end of life.

Clare: Thank you Aly, it’s been a real pleasure delivering education sessions for EoL Doulas, great sessions and discussions!

Clare: What training do EoL Doulas receive?

We receive in depth training to be au fait with the legalities and complexities of making an End of Life Plan. This is so we can truly understand and appreciate this in detail and in turn make the process of a person developing their own plan fulfilling, un-burdensome and freeing. The result is that the person has expressed what they want, have exercised choice and others involved understand what they want and do not want.

Clare: How can people find out more about your work?

Aly: Anyone wanting to find out more about what we do or to obtain support can make contact via https://eol-doula.uk/contact-us/. We respond very quickly so that you can speak directly to an End of Life Doula to find out more about how we can meet what you are looking for

Clare: What key message would you like to share?

Aly: Clare asked for a key message I would like to share and I think today it would be this. The two most important transitions we make are when we are born coming into this world and when we die and leave this world. Both experiences should be surrounded by love; with our body, mind and spirit tended to. End of Life Doulas exist for this very reason. My dream, though, is that through our work in bringing death and dying back into everyday life and sharing our knowledge and skills in an open hearted way in our own communities one day we will no longer be needed. I doubt if I will see this dream become reality before I die but End of Life Doula UK will keep on keeping on concentrating on making a positive difference to how we die in our communities.

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