I’ll never forget the moment when I received a telephone call from Great Ormond Street Hospital telling me that it was time to consider “the place of death” for my daughter, Margot.

Up until that time, I had desperately clung onto the hope that Margot’s treatment would somehow come good, that she might unexpectedly make some sort of miraculous recovery. 

Initially, I found the idea of even speaking to the palliative care team abhorrent – I regarded it as an admission of defeat – but the more I learned, the more comfort I derived from the knowledge of what was likely to happen. Confronting the fear head on and understanding that their “symptom management” approach would help Margot be as comfortable as possible helped me prepare myself with what was coming.

In itself, coming to that personal realisation was a surprise to me.

One of Team Margot’s aims is to seek to provide comfort and hope to families or carers of child cancer patients. Recently, we had the pleasure of meeting Stephanie Owens from Dying Matters, who works to create an open culture that talks about death, dying and bereavement.

Much of what Stephanie talked about resonated with me and with Margot’s story, so I invited her to write a blog post in the hope that it might help others who find themselves in a similar situation, with a terminally ill child. 

Thank you Stephanie.

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A mother with cancer has lost her hair from chemotherapy and is wearing a bandana. She is reading a book to her daughter in their home.

Talking about death is never easy. It can be even more difficult if you are facing the death of a child.

It can open up a lot of sadness, doubt, denial, awkwardness and anger. 

But it is important. 

Talking about and planning for death can actually be a boost to wellbeing. It will never take the pain or the grief away, but it can help you understand what may happen, what processes might be involved and what you would like for yourself or a loved one.

Some gentler ways to introduce death as a topic could be to talk about music or food. For example, what kind of songs do you want played at your funeral? Or what would you want your last meal to be? Something every day and ordinary helps make it seem easier to discuss and brings people together. Many people that Dying Matters has encountered over the years have gotten really behind these topics as it helps them to feel involved and connected. Death is part of life after all, and it should be discussed in the same way. 

If you are talking to a child about death – maybe they have a sibling or friend who is dying – it is important to remember to be honest. Children understand a lot more than we think they do! And if you are feeling sad and apprehensive, the best thing to do is explain why and what is happening in language that is appropriate for their age, but without using euphemisms. (No saying “they have gone to sleep” or talk about someone being “lost” or “passed away”, as this could be confusing and seem scary). Dying Matters have this helpful resource that provides tips on talking to children about death. 

Another really key factor is to listen. Listen to those who want to talk about death or their fears or their worries. If you are supporting someone who is grieving, then you may not know what to say. It is important to remember that they would likely rather you admit this than say nothing at all! In fact, some research from 2020 shows that many people would rather you said the wrong thing than nothing at all. 

Everyone grieves differently. Some prefer to be alone, some want someone to simply listen, some want company. There is no right or wrong way. 

Finally, it is important to remember you aren’t alone. There is help and support out there for those going through a bereavement. Many hospices provide bereavement support, even after the death and there are many groups where you can connect with those who have similar experiences.

Dying Matters has this resource for people experiencing a bereavement, as well as a list of organisations that are also able to provide more dedicated support. 

The Dying Matters campaign runs all year round with a dedicated Awareness Week every May. The campaign aims to break the taboo and generate an open culture that talks about dying, death and bereavement. If you have a story to share or want to get in contact with Dying Matters, you can email info@hospiceuk.org or find them on Facebook, Twitter and Instagram under @DyingMatters

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Stephanie Owens 

st.anna.owens@gmail.com

Yaser

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015), Humphrey (2017) & Margot (2012-2014)