Expert’s advice on what children should know about death

A passion fuelled by professional expertise and personal experience is what drives Sir Al Aynsley-Green to campaign for better support for bereaved children.

A paediatrician and later the UK’s first Commissioner for Children, his career was forged after losing his father at the age of 10. He remembers sitting alone on a bench playing with a toy truck in the waiting area of a hospital where his mother was visiting his father, who had been operated on the day before.

After several hours, he was surprised to see his aunt, who told him: “Your daddy has just died, and you have to be the man of the family now and look after your mum and sister.”

He was later to learn that his father had begged to see his son before he died, but it was hospital policy not to allow anybody under 16 to visit patients on the ward.

That day young Al’s life had changed in an instant and he resolved to become a doctor to “stop other boys’ and girls’ mummies and daddies dying”.

Some 40 years later, he was watching a TV documentary about the UK charity Winston’s Wish, which runs residential weekend camps for bereaved children. As the children let off helium balloons containing a message for the loved ones they had lost, Sir Al wept uncontrollably.

Pent-up anger

It was an outpouring, he says, of pent-up anger about not being allowed to say goodbye to his father before he died, nor to see his body when it was in their sitting room before the funeral.

“Think adult, think child,” is his mantra to professionals caring for a dying adult, as he told the recent St Luke’s symposium in Dublin, and he will be back to address the Irish Children’s Bereavement Network conference on November 18th. They need to ask what does this mean for the children of the family – “they may be the only people to ask that question”.

While the hospice movement is very good, he says, there needs to be much more focus on how unexpected death is handled in hospital emergency departments.

There is hard evidence of what’s most important for bereaved children, he says, which includes:

- For death to be seen as part of life – both in wider society and within families.

- Information and education on what death actually means.

- Careful listening to encourage them to talk about how they feel. In his experience they bottle up their feelings because they don’t want to upset their families, or they may feel guilt, eg “I wish I hadn’t had an argument with him before he went off on his motorbike…”

- Addressing of their fears and anxieties, eg “My sister has just died from cancer, will I get cancer?”

- Help to come to terms with their grief, part of this is meeting other children to share experiences of bereavement.

- Access to support but, he stresses, it is really important that bereavement and grief are not seen as medical issues. “Countless families survive very well, despite the difficulties and there is always the risk of medicalising what is a natural phenomenon.”