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Talking about childhood death

News and comment

We are now in the 7th year of Dying Matters, with the coalition established in 2009 to promote public awareness of dying, death and bereavement. As each year passes I hope that there will be a sudden transformation and we will all be able to talk about death and dying comfortably or be able to have the important conversations with family and friends about our wishes in relation to our own deaths.

How often do we hear that there is only one certainty in life. . . that we will all die? Yet still we find it hard to discuss death, especially when we try to talk about the death of a baby, child or young person.

Is it because we want to get it right? Do we avoid causing any additional distress by avoiding talking about childhood death? We push the subject back into the shadows, just as society has pushed death into the background, hiding it away behind closed doors, often within institutions, effectively professionalising a natural process.

Avoiding the conversation

As a result of this distancing of death, we have taken away the natural, human skills of caring for the dying. And along with that, we have taken away the natural, human skills of talking about dying – both with those facing death, and more widely with each other.

For those anticipating the death of a loved one, avoiding the conversations doesn’t take away the hurt, doesn’t stop the unimaginable happening. Avoiding the conversation just makes it harder for those affected to talk about their lives and their loved ones, it makes it harder to ask the questions you know you really need to ask.

And yet, it is incredible that we can use the terms death and dying so easily in other conversation – “I could’ve died of embarrassment” “I am dying to/for xxxx” – while we clam up when we are talking about the actual death of a person, finding euphemisms easier to use.

For example, a couple of years ago when writing some end of life resources I found myself puzzling over the word to use when a child comes to the end of their end of life care. Oh yes, I realised, I meant when the child died. Why was it so hard? When did using that term become so difficult?

Recent media coverage on end of life care and conversations about impending death have highlighted the need for training for professionals involved in the care of dying people, but it isn’t just the care professionals who need these skills.

It is the teachers who deal with the bereaved brother or sister, the human resources team who pave the way for the bereaved mum or dad to return to work, the work colleagues. Surely it is all of us who might play a part in supporting someone who has lost a loved one. In fact, only those who never come into contact with a bereaved person are excused the responsibility for preparing to be able to talk to a bereaved person.

The death of a child

It is important that children, young people and their families have choices in the care they receive as they approach the end of their life. This should include where they/their child receive care and support; the preferred place of death and preferred place of care; issues relating to resuscitation and organ and/or tissue donation, and should ensure that a symptom management plan for end of life is in place.

Throughout the conversations, it should be clear that plans can change – because people can change their mind. End of life planning helps prioritise people’s wishes, it helps them think about the choices they have, it should involve all members of the family as they prepare for the death of their child, their sibling, their grandchild.

There are a range of different resources to support families talking to children about death and dying, taking into account the child’s level of understanding, from younger children to young adults.  And of course a range of resources available for professionals on our website.

Alongside the conversations about death and dying and as part of advanced care planning we could usefully introduce the considerations of how to get the young person’s digital affairs in order, such as how to transfer photo’s and film clips to another person, or how to use iTunes playlist to find an appropriate funeral music. Dead Social are raising awareness around digital end of life planning and digital legacy issues and have a range of information and resources to support these conversations.

Preparing for death

In the past century, child mortality in high-income countries has fallen to very low rates, as a result the experience of childhood death is something unfamiliar to us. If we find it so hard to talk about death and dying, then it becomes even more difficult to talk about childhood death and dying, but here in the UK about 5,000 children die each year and each death will impact on many others.

If we can’t talk about death and dying, how can we plan and prepare ourselves for the reality of death happening? All the planning in the world won’t make the moment of death any easier, but it helps to build plans for that moment, so in that mind-numbing time of loss and grief, some of the decisions have been thought about, talked about and may already have been made.

Katrina McNamara is Director of Practice and Service Development at Together for Short Lives.

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