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Last Updated: Thursday, 16 September, 2004, 10:23 GMT 11:23 UK
Discuss death with dying children
Image of a child
A quarter of parents regretted not talking about death
Parents regret not discussing death with their children who are terminally ill, a survey shows.

Many who could not bring themselves to raise the issue later wished they had, Swedish researchers from the Karolinska Institute found.

Yet none of 147 parents who talked to their child about death regretted it.

The findings, based on a questionnaire of 449 parents of children with terminal cancer, appear in the New England Journal of Medicine.

I have seen children with cancer respond to the idea of their dying with startling maturity
Dr Lawrence Wolf, from the Tufts-New England Medical Centre in Boston, US

They might help parents faced with the same difficult decision, the researchers believe.

Dr Ulrika Kreicbergs and colleagues asked 449 parents who had lost a child to cancer if they had discussed death directly with the child.

They then asked these parents whether or not they regretted the decision.

None of the parents who discussed death with the child had regrets, whereas 27 percent of the parents who did not talk with their child about death regretted not having done so.

Regret

Of those 27 percent, the majority regretted it because they realised that their child seemed to be aware of his or her imminent death.

Mothers were also more likely than fathers to regret not having talked about death with their child, as were parents of older children compared with parents of younger children.

Parents who regretted their decision were twice as likely to experience depression afterwards.

I always try to get families to talk about it. Often children are much more aware about what is going on than parents think
Dr Kevin Windebank, consultant paediatric oncologist at the Royal Victoria Infirmary in Newcastle

The researchers said: "It is possible that the parents who did not respond to the sense that the child was aware of his or her imminent death by talking to the child about it experienced an inner conflict, a conflict that continued after the child's death, when it no longer could be resolved."

Parents who did discuss dying with their child were more likely to be older themselves, be religious, retired or on sick leave and to have sensed that their child was aware of his or her terminal condition.

Dr Lawrence Wolf, from the Tufts-New England Medical Centre in Boston, US, said the findings should reassure parents and doctors that it is right to be open about illness with children.

"I have seen children with cancer respond to the idea of their dying with startling maturity.

"A nine-year-old boy left a legacy by giving his prized possessions to his friends, planned his funeral, and decided what he would wear to his burial."

Dr Kevin Windebank, consultant paediatric oncologist at the Royal Victoria Infirmary in Newcastle, said: "This is a really interesting thing to do and a good thing to do. It's a difficult area and to find out more is important."

He said, in his experience, families who had open discussions with the dying child, at an appropriate level, had as positive experiences as one could hope for, particularly when there were other siblings involved.

"Siblings can have happy feelings about their brother or sister earlier when the family is open about it," he said.

"I always try to get families to talk about it. Often children are much more aware about what is going on than parents think."

Alan Phillips, manager of the Alder Centre in Liverpool, which provides care and education for anybody affected by the death of a child, said: "Openness and honesty is the best policy.

"If a child asks the question then they are ready for an answer if it is appropriate.

"If parents feel out of their depth they should seek help and advice. You are not alone," he said.


SEE ALSO:
Children 'left to die in agony'
15 Feb 04  |  Health


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