By Anna Lyons
Most people know what a birth doula is, but not many have heard of an end of life doula.
Sometimes we’re called death doulas, death midwives, end of life companions or soul midwives. While a birth doula provides support and guidance to mothers at the start of life, an end of life doula provides practical and emotional support at life’s end.
Often I’m called in at diagnosis when there’s an element of disbelief and panic but sometimes it’s at the last minute when someone is actively dying. Their needs can change, too – someone who doesn’t require much support in the beginning can need a lot more assistance as their illness progresses.
No two days are ever the same. One day I might be going to hospital appointments with someone I’m working with or advocating on their behalf with their medical team. Another day I might be helping children say goodbye to their mum or dad. Some days I’ll be attending funerals.
There’s a very practical side to my job. I might help someone write an Advance Directive, a will or a do not resuscitate order (DNR), and help anyone thinking about appointing a lasting power of attorney.
Disbelief often accompanies a life-limiting diagnosis. Often, in the stiflingly small consultant’s office, any words spoken after a devastating prognosis fall onto ears that are powerless to hear any more. I take extensive notes in consultants’ appointments because I know my clients will be too distressed to process it all.
One client I worked with had an amazing medical team, an incredibly supportive and present family and a big group of friends.
She contacted me because she needed someone to offload to without making her amazing support network feel inadequate or unappreciated. She wanted someone she didn’t feel she had to protect from the harsh realities of her illness and her feelings about it.
They never knew she’d sought extra help. I only found out she’d died from an online obituary.
Yet some people don’t have family and friends who can help them, or who can’t take time off from jobs that pay the bills.
Illness can also drive our friends and family away. These losses can be isolating and frightening at a time when you most need company and reassurance.
At 17, I found myself standing at the graveside of one of my nearest and dearest friends. Despite being ill for a long time, we didn’t know that he’d been diagnosed with an incurable cancer.
He knew he was going to die but didn’t feel able to tell us any of us. There was a stark clarity to sitting in that packed congregation knowing he was barely out of their teens. His death shaped my life and his silence made me decide that I wanted to help people at the end of their lives.
When I first meet people we’ll talk about what a good life looks like to them and what they would consider to be intolerable.
They’ll set out boundaries around what they consider will be the limit of their suffering, and as their illness progresses, those boundaries almost always shift.
People have described their illness as being like a huge magnifying glass, augmenting what matters most and sometimes allowing them to let go of things they realise don’t really matter.
Others have described to me the lucidity that can come with a short prognosis, how things taste and look different when you know you’ll only ever get to eat or see them a few more times. Of course, this isn’t always the case, and depression can go hand in hand with being physically unwell.
With some clients it’s more important to acknowledge just how sh*t the situation is. There’s no fix for end of life. There’s no cure. Sometimes all someone needs you to do is acknowledge how unfair what’s happening is. The most fundamental part of my job is listening: to really hear what life is like for someone, to bear witness to their pain, to sit with them in their darkest moments and to be there.
That said, I am always amazed at how people are able to find humour in the darkest of situations.
I once helped a young woman say goodbye to her father. She hadn’t been able to get to see him before he died and I accompanied her to the funeral directors.
She was distraught. She’d told me that he had always been a joker and while his lame jokes drove her to distraction during his life, they would be one of the things she’d miss most.
She started crying so I handed her a box of tissues, which she dropped. She then bent down to get it, stood up too soon and knocked his coffin, rocking him like a dingy on a rough sea. I looked up in concerned horror to find her giggling hysterically. She said he’d have loved the sitcom silliness of the moment and felt they’d shared one last laugh.
That people can smile despite, in spite, of all they are facing, that family and friends can demonstrate and show a love that’s pure and deep, is humbling to bear witness to.
I don’t really believe in the idea of a ‘good death’. Describing death as ‘good’ makes me feel I’m doing a disservice to life, to loss and to grief. My job is about helping people live a good life and that ‘living’ includes dying.
The dying, we all hope, will be as gentle and as painless as possible but it’s the living of a good life right up until your last breath, that what it’s all about.
Talk to your children about life and death, dying and grief – it is as important as talking to our children about sex and relationships. And do it now. It’s so much easier to have those conversations when everyone is well. Every adult should write a will, we should all have an Advance Directive, appoint a lasting power of attorney and sign a DNR.
I have regular supervision and therapy to help me do this job. I take time out, and I would prefer to work with fewer people and do an excellent job than take on too much and buckle under the emotional weight.
Hanging out with my three daughters and walking our silly one-eyed dog helps me keep my emotions in check. Gelato helps a lot too.
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