Anna Lyons is an end-of-life doula, and the co-director and curator of Life. Death. Whatever. She lives in London with her three daughters and their dog. In this extraordinarily beautiful interview, she explains the importance of her work, what it has taught her about life, and why it is vital that we talk openly to children about death…

CP: What is an end of life doula?
AL: Atul Gawande wrote “Our ultimate goal, after all, is not a good death but a good life to the very end.” This is the very heart and essence of what an end of life doula hopes to do. 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 you and bear witness to the experience. We’ll never tell you what to do at the end of your life, we’re only there to help you live it.
I provide practical and emotional support people who are dying, and their family and friends. I’ll take their children to the park, and help answer their questions. I’ll help create memory boxes. I’ll walk the dog. I’ll help keep the house clean and cook comforting food: I know it’s the last thing anyone will be thinking about at this stage in someone’s life, but everyone will need it. I’ll be there to liaise with the medical team and help translate medical jargon. I’ll ask doctors those forgotten questions in overwhelming medical meetings. I’ll interact with care agencies and hospices. I also spend time with the person who is unwell. I can facilitate those difficult and necessary conversations with loved ones. And when the moment comes and goes, I am there for the bereaved. I can help with funeral arrangements and plans for the wake. If you want to keep your loved one at home after they’ve died, I can help you do this too. I’ll 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.

CP: How did you come into this line of work?
AL: I worked in end of life, psychiatric and educational settings for years and then went to doula school. There is no regulatory body for doulas and no actual accreditation or registration but I went on a course to learn the ins and outs of the role – another point to mention is that regulation is essential and we need it.

CP:How has your approach to death and life been affected by your work?
AL: I appreciate the small things in life more. Every time I say goodbye to someone (even if it’s just a brief parting) I wonder if I’ll ever see them again. I’m not afraid to tell the people I love how important they are and how loved they are. I eat too much gelato and I always try to take the most nourishing path rather than the path of least resistance. I value time in a way I’m not sure I would if I didn’t work in this environment but I’m just as guilty as anyone for not putting myself and my happiness first and I’ve got lots of regrets over risks I didn’t take and things I didn’t do.

CP: Are you less impacted by the prospect of death, and by grief itself?
AL: I think it’s impossible to be ‘less impacted’ by grief. The grief we all feel is believed to be directly related the amount of love we had for the person who has died and this does not lesson because I work in the world of death and dying. I perhaps understand grief better than I did because I am surrounded by it and open to discussing it, but it certainly does not impact me less. The grief model I think best encapsulates true grief is ‘Tonkin’s’ theory of ‘growing around grief’. The belief is that we don’t ever ‘get over’ significant loss and the grief does not lesson but that we grow a life around the grief. Some days the grief can be felt as acutely as ever, and other times the life we have grown around our loss cushions and bolsters us from it.
In the medical profession many health care professionals deliberately distance themselves from their patients – and this can be in part to prevent becoming emotionally involved. It’s impossible to have this kind of distance as a doula. In order to do the work I do I have to have in place support structures and supervision so that I’m able to ‘manage’ my own feelings. Zen Hospice in San Francisco has a beautiful ceremony where when one of their residents die they bring them out into the garden and everyone who works there and has been involved in the person’s care sprinkles flower petals onto them and says a little bit about what they meant to them and the impact they had on their own lives. It’s essential to acknowledge that people who work at end of life also grieve the loss of those they help. We rarely do that in the UK and I think that’s a real shame and failing. We don’t emotionally care for the people who work at end of life enough, especially doctors, nurses and HCAs. I spoke to an A&E doctor recently about what happens when a patient dies – they said they go and stand outside, smoke a cigarette and then walk back in and start all over again. By not supporting our HCPs and looking after their mental health we run of risk of preventing them from being able to do their jobs properly, or even at all.

CP: You are co-curator of Life. Death. Whatever. This is an award-winning festival run by yourself and Louise Winter, which you have run at places including the National Trust’s Sutton House in East London, Winchester University, Dulwich Picture Gallery, as well as online, and you are in the process of collaborating with Redbridge Libraries. What is it and why did you create it?
AL: There are three basic things we can rely on to be true in this life of ours; we’ll be born, we will live and we will die. These three events are fundamental to our existence, and can sum up our finite lives. The mess of birth and life are acknowledged, if not always understood. We talk of our fears about childbirth, we talk about a lot of the issues and struggles we face in our day to day lives, but very rarely do we volunteer to talk about death and dying, especially our own.
Life. Death. Whatever is trying to change that. We position all three things together and challenge people to consider all three as one; the three parts creating a whole. We cannot have life without birth, and we cannot have life without death. We’ve been working to redesign the dialogue about death and dying, to engage the public, and to find new approaches to understanding the end of life. ‘If we can face up to death, we can face up to anything.’ This is a quote I love by Jon Underwood, founder of Death Café – a movement set up years ago by Jon Underwood (who died suddenly last year in his mid 40s) and his mother. People come together to drink tea and eat cake and discuss death and dying. Jon’s ethos was all about creating a safe space where people could freely discuss death and dying. In accordance with this ethos, we host an eclectic line-up of events, installations and workshops, encouraging creative reflection on life, death and everything in-between. Sutton House played host to an art exhibition and a playful and lively line-up of artists, performers, academics and funeral world professionals, including an exciting series from The Good Funeral Guide, with chemists, poets, perfumers, puppeteers and DJs meeting to celebrate, contemplate and reflect on the inevitable.

CP: With the recent publication of books like Julia Samuels’ Grief Works and Max Porter’s ‘Grief is the Thing With Feather’, and online conversations such as your own Instagram project ‘Unsaid’, which encourages people to share their unspoken feelings about those who have died on Instagram @allthatsleftunsaid and Twitter @u_n_s_a_i_d_ and also atwww.left-unsaid.com, it feels like we are shifting towards a more honest dialogue around birth. Do you agree?
AL: In all honesty, I don’t think attitudes are changing and I don’t think people are more open and are talking about things. There are lots of fabulous people out there now trying to open up the conversation but we have got a very long way to go. I believe it’s essential that we introduce ‘death, dying and bereavement’ as a mandatory PSHE topic in all schools from primary age. We don’t have a hope in changing the attitudes of the masses now but if we change things for our children and their children we stand a real chance of making death and dying something we can all live with. Children aren’t generally afraid of death, the fears they have are usually projected from the fears of the adults around them. If we can teach honest and open communication in children as young as 3 or 4 and continue to teach and discuss end of life and grief issues frequently right the way through until the leave school I think we have a real chance of fundamentally changes attitudes to death and dying.
We need to teach people how to talk about it and how to do it. We should have the equivalent of antenatal classes for end of life. It’s so terrifying because we have no idea what it’s like and what to expect. It’s the ultimate unknown. And people who are in the depths of grief need to understand that what they are feeling is ‘normal’. By refusing to discuss and acknowledge death and dying for so long we have effectively marginalised and isolated people who are grieving – no one knows what to say to them so they avoid them and the bereaved have no context or framework for their feelings: many just don’t understand that what they’re feeling is normal. (complicated grief is a whole other subject).

CP: I’m sure you get asked this all the time, but what are the main rerets and achievements you hear from people who are at the end of their lives?
AL: Regrets are almost always the things people didn’t do. It’s always the risks and chances they wished they took and didn’t. People want to know they’ve made a difference and they’ve left a legacy of some sort. They want more time to spend with those they love, not to finish that business plan for that client they don’t even really like. It’s not about stuff and items accumulated and amassed, it’s really truly all about love. To love and be loved. To have lived and not just ‘survived’. Not just to say they’ve been happy but actually felt true happiness and given true happiness.
Allowing people to live their own lives right up until the point they die is a basic human right. Everything in our powers should be done to facilitate this. We should treat people at the end of their lives with deference. When someone is dying, it’s all of our jobs to help them do what really matters to them. One of the questions I most frequently ask is ‘what really matters to you?’ and we will do all we can to make sure that gets done.

CP: What has all this taught you about how you live your own life?
AL: When someone is told their life is limited, time becomes hugely precious. But the truth is all our lives are limited because we are all mortal beings. All time is precious. No one has all the time in the world. At end of life this is so much more acutely felt. I worked with someone who disagreed with people having children out of wedlock and as a result had refused to see or acknowledge her beautiful great grandchildren. She died in a hospice surrounded by her immediate family and the day before she died one of her granddaughters brought in photographs of those great grandchildren she had denied. The old lady stared at the images and traced the outlines of their faces with her fingers. She talked of her regret, her stubbornness and her ingrained prejudice preventing her from having these gorgeous humans in her life and she wished she’d got over herself and her ridiculousness while there was still time. She didn’t ever meet her great grandchildren but she did make peace with the grandchildren. It’s a cliché because its true – life really is short and we really shouldn’t take it for granted.