A celebration of life
Sam, from our communications team, reflects on her beloved stepmum Jilly’s (both pictured here) cancer diagnosis and how an end-of-life doula may have helped them both.
Sam and Jilly
When my beloved stepmum, Jilly, was told her cancer couldn’t be cured, it was her wish to spend her final days at home.
We all supported her choice, but when she had a nasty fall it became clear my Dad couldn’t cope with looking after her. We found care for her at a wonderful local hospice, where she stayed until she died.
I remember feeling in a whirlwind at that time.
I yearned to spend those final days talking to her, holding her hand, giving her a spritz of her favourite perfume. But there were practical things to consider: I needed to go to M&S to get nightwear, update friends and family, transport my Dad to and from the hospice, arrange childcare for my daughters. Life lurched from the practical to the emotional, and when we eventually said goodbye to Jilly, I realised how consumed I’d been with the practicalities of her cancer diagnosis. There had been so much: the hospital visits, the chemo, scans and blood tests, the side effects, helping out around the house, that I hadn’t really told her how much she meant to me or asked her how she felt about dying. I didn’t know if there was anything she needed to say, or anyone she wanted to make peace with. I didn’t know what her funeral wishes were or whether her Will was up-to-date. I regretted the missed opportunities.
Introducing Lizzie
When I heard that our Bournemouth cancer support centre was hosting a visit from Lizzie, an end-of-life doula, I was intrigued to find out more. I’d never heard of one before and arranged to speak to her. She explained that doulas are the bookends of life. Just as a birth doula is there at the beginning, an end-of-life doula is there for the end.
“We’re very much about reframing the end-of-life experience,” Lizzie tells me. “Death still feels like a taboo word, but it’s a natural and normal part of life. By encouraging people to think about, and communicate, their needs and wants, the more living they can do. It means that the last months, weeks or days are as compassionate, calm and natural as they can be. Dying isn’t just medical, it’s emotional and can be spiritual, too.
Taking control
There are at least 250 practising doulas throughout the UK, all trained and insured through EoLDUK, who adhere to a code of practice. They work alongside hospice staff or in the community to provide non-medical support for those with an end-of-life diagnosis, or their loved ones, and help them take control of their final days. For someone who has no one and fears dying alone, a doula can offer companionship and be there throughout. Equally, someone who has lots of close family and friends may benefit from having an impartial confidante they can speak freely and honestly with.
The lady with the lamp
“There’s no right or wrong way to feel if you receive an end-of-life diagnosis,” Lizzie explains. “You might feel, ‘oh well, that’s life,’ or you may think it’s now or never and go and do something you’ve always wanted to do, or you might be struck with a sense of bravado and carry on with life as normally as possible. You might experience all different sorts of emotions, too; ranging from fear and anger to even relief, and these can change from day-to-day. My role is to be the lady with the lamp; guiding someone through a thick forest, helping them decide what’s most important to them and which path they’d prefer to travel.”
Lizzie will take the time to find out what each person needs. This might be emotional support – for example talking through what they fear the most; or it could be practical things like taking the dog out or washing up. If needed, she can help people plan their deaths: talking to them about their wishes and how they would like to spend their last days. A doula can sit with the person, or be a reassuring presence in the background.
A natural fulfilment of life
I know from my experience of supporting someone I loved dearly through a terminal diagnosis just how scary, rushed and medical it can all feel. I wish I’d known about Lizzie before. I know she would have helped Jilly’s last days feel like the natural fulfilment of her life, and a time to be cherished.