The proportion of chronically ill young children dying in intensive care after being admitted to other hospital wards has steadily risen year on year since the end of the 1990s, reveals a study in the Journal of Medical Ethics.
The researchers analysed the records of one large children's hospital, to find out where children had died, and of what causes.
The period of analysis spanned seven years from 1997 to 2004 and included all age groups from 0 to 18 years.
During the seven years, 1127 children died, over half of whom (58%) were younger than 12 months.
Congenital malformations, perinatal disease, cardiovascular disorders, and cancers formed the bulk of the causes of death.
There were no major changes to overall admission rates to the hospital or to intensive care over the study period, nor did overall death rates vary.
But the numbers of children dying in intensive care rose from around 80% in 1997 to almost 91% in 2004.
Among children who died in intensive care, the numbers of those who had been admitted from wards within the hospital almost doubled over the same period from just under 15% to 25%.
Children spent almost two weeks elsewhere before admission to intensive care.
Infants with congenital problems or perinatal disease were more than twice as likely to die in intensive care, while older children with cancer were more than six times as likely to die in other hospital wards.
The authors say that guidance from the Royal College of Paediatrics and Child Health, published in 1997, specifies what sorts of conditions merit withdrawing of life support or active treatment.
But the rising numbers of children dying in intensive care suggests that it is not being followed and that terminally ill children are still being actively treated.
This might be because the course of acute bouts of illness in children with chronic problems may not always be clear, suggest the authors.
"It is equally possible that parental and societal expectations regarding children's good health and long life spans prompts them to seek aggressive curative care despite the benefits of such a course being unclear," they say.
But they conclude that death in intensive care is a highly distressing experience for both the child and parents and that early involvement of a symptom care team could be helpful.