We are doulas of death. A birth doula provides support and guidance to the birthday mother and the brand new life. End of life doulas have forged an innovative approach to the care of the dying by putting emphasis on the importance of relationship and accompaniment. What we do is support. Practical and emotional support for those dying and their families. We should all treat the dying with dignity, but also with deference. Our elderly and our ill should be allowed this as much during death as after birth. Our final moments should be treated with the same importance as those first few moments of life. Let us embrace the end as we embraced the beginning.
– Anna Lyons –
Anna is a Living Well Dying Well trained End of Life Doula. She worked in acute mental health and palliative care for years and can sometimes be found giving lectures in fine art.
We will die. No one can escape that inevitability. Considering it’s something that universally links us, it’s strange that so many of us feel unable to talk about death. It’s a simple fact; everything has a shelf life. Everything dies. Rocks erode. Landscapes change. Metal rusts. Our bodies wrinkle, creak and bend. We will die.
During pregnancy we are revered as birthing goddesses; our fertility is lauded and our ability to ‘grow’ a human child is pawed over in wonder. We are ‘life givers’ in the truest sense of the word. Our babies are welcomed into this world with fanfare and excitement. Baby showers are thrown, cakes are baked, booties are knitted and blankets embroidered. The second our scared newborns whimper they are soothed and fussed and fed and changed. Every tiny milestone – those first sounds that eventually turn to words, that first crawl that eventually turns to steps. What it is about a baby – their fragile vulnerability – that draws us towards the beginning of life is mirrored at life’s end. We find it difficult to protect and celebrate life then, however, and care for our sick and elderly.
We are doulas of death. A birth doula provides support and guidance to the birthday mother and the brand new life. End of life doulas have forged an innovative approach to the care of the dying by putting emphasis on the importance of relationship and accompaniment. What we do is support. Practical and emotional support for those dying and their families.
We should all treat the dying with dignity, but also with deference. Our elderly and our ill should be allowed this as much during death as after birth. Our final moments should be treated with the same importance as those first few moments of life. Let us embrace the end as we embraced the beginning.
I am an end of life doula. I often have this moment – when I tell someone for the first time what I do for a living – where I’m met with silence, like I’ve opened up a previously ‘forbidden’ dialogue. The questions, when they come (and they do, many of them) are things the asker treads carefully around. I love answering them, because it’s the very dialogue we should all be having. And if I’m honest, I delight in the reactions I get.
‘Isn’t that just really sad?’ (sometimes. Sometimes it’s heart-breaking. Mostly, though, it’s life-affirming).
‘Isn’t it really grim? (it’s beautiful)
‘You must be so brave and strong.’ (I’m not; they are. I’m just there to help.)
I’m not a new age, hippy do-gooder. I’m not religious or spiritual (although some doulas are). I’m just someone who has watched too many ‘bad’ deaths and wants to redress the balance.
For me, a ‘good death’ is about someone dying the way they want to. I’ll never tell you what to do at the end of your life. I’m only there to help you live it.
I volunteer, alongside my freelance work, for an organisation called Living Well Dying Well (LWDW). I work on behalf of the certified and in-training doulas and manage their social media to help raise our profile and to get our services out in the public domain. Check us out on Twitter and Instagram on @LWDW_EOL_DOULA.
LWDW was set up by the doyenne of end of life doulas, Hermione Elliott. Hermione has worked at both ends of life, as a midwife, in palliative care and now as an end of life doula and a trainer. LWDW pioneers work with individuals to live as full a life as possible right up until the end. Our initiatives include training end of life doulas and the training of health care professionals and services to help people think, talk and prepare for end of life in a safe and supportive way.
The role of end of life doula is one of supporter and companion, in a non-medical capacity, to people living with life limiting illness. We work with the dying person, their families and their friends. We hope to provide practical, emotional, psychological and, if requested, spiritual support. As end of life doulas we can help with the practical. Everything, from walking the dog, housework and preparing meals, to Advanced Care Planning and Directives. We can liaise with the medical professionals, care agencies and hospices. We perform advocacy with government agencies. We’ll even help arrange the funeral.
Often, we give emotional support. We spend time with the dying. We hold the space for conversations to take place, so death can be approached without fear or loneliness. We can help settle unresolved issues in relationships. We can hold vigils. And when the moment comes and goes, we are there for the bereaved.
The profession of end of life doula is still very new but our network is growing and we are witnessing a real surge in end of life matters being discussed in the media.
The reason that this is such a new profession is very, very old. Talking about death, really talking about dying is still all too taboo. I believe that it’s something people want to talk about. As a society, we don’t equip ourselves with the tools to do so. I give people a free pass to engage with death. My openness about my role allows them to ask questions they often don’t feel able to ask in polite company.
One particular thing I have noticed from my work surprises many people: Children, who we shelter so much from this subject, are – always – so much better at talking about death and dying than us grown-ups. We create the fear of death. They’re our dark fears and bleak anxieties. Honest, helpful, open talk about death and dying can be normal, if we let it.
We talk about death and dying a lot in our house. I know what colour my three girls want their coffins painted if anything ever happens to them. They know where I want my ashes sprinkled and they know I don’t want to be kept in a mortuary after I die. I want to stay at home. In my bed. Surrounded by Waitrose essentials frozen veg and ice packs with my dog at my feet and the windows tightly closed. My eldest knows that I want full-on hair, make-up and nails. I don’t care what I’m wearing but I want to go into the fire with excellent eyebrows. When we talk about it, we do so with smiles at our (sometimes) silly wishes and suggestions for each other. (My eldest wants her coffin to be decorated in all her various snap-chat selfies!) We discuss it together, united in the optimism and hope that we’ll have one of those things that is so unnecessarily rare: a good death.
Now you. Go on. I dare you. Take someone you love to one side and talk. Talk about death and dying. Think about death and dying. It’ll happen one day. Don’t live in fear. Take steps towards making death something you can live with.
Postscript: 3rd October 2015
When Lucy asked me to write this blog about the work I do my intention was to keep it fairly factual and not especially personal but today changed all of that.
My end of life care career journey began in 1992 with the death of my best friend, Paul. As I write this Chloe from X-factor is singing Amazing Grace A cappella on the TV. Hugely fitting as this was the song we all sung at his funeral. Today, a wonderful friend, was killed in a cycling accident. It’s fitting that he was riding for charity and that he died doing something that he loved. He made the unbearable, bearable and the good, wonderful. It’s not an exaggeration to say that his love and support got me through some of the toughest times of my life.
Paul’s death was long. It was long and excruciatingly painful. The medical profession threw everything they had at giving him longer than his 23 years. They didn’t give up ‘actively’ treating him until he died. He died clinging to the belief that he was going to live. The last year of his life was a tragic mess of chemotherapy, life-saving operations and hospitals. He spent most of his time in high-care units, unable to breath by himself or walk or talk. He was never given the opportunity or the option to live as good a life as possible up until the end, they were too busy trying to ‘save’ him to notice that their treatment had destroyed any quality of life and the very essence of who he was long before his heart played out its final beats.
Today, my friend died, pretty much, on impact. His bright shining light was extinguished in an instant. He died whilst living the best possible life, quite literally, right up until the very end.
Why am I telling you all this?
Probably because I’m feeling sad and vulnerable and I’m in the beginning stages of grief for a beautiful human being who I loved dearly. Probably because we never listen to advice about living life to the full because we don’t know when our time will be up. Probably because I’ve realised that even working within the world of end of life care, nothing prepares you for the unexpected and shocking death of someone close to you. Probably because I’m sitting here wondering if he had those end of life conversations with his family that I do my best to facilitate. Probably because I’m hoping that they knew what he wanted and how he wanted things to be after he was dead. But also because through all of the desperate sadness I’m feeling, the one thing I’m left with is the normality of death. Even sudden and unexpected death. We are born to die. We need to wholeheartedly embrace the end of life in the same way as we do the start. Let’s talk about life and death with the same ease. It’s normal. It’s life. Life can be painful and messy and difficult. Life can be gorgeous, magical and wonderful. Life is all encompassing: it is birth, and death and everything in between. Let us be born with deference. Let us live our lives with humility and love and understanding. And let us all die our deaths with deference.
An end of life journey marks the final time we’ll get to do things for them, so let’s make it the best we can.