In the first study of its kind, a majority of paediatricians questioned about deaths in Irish neonatal intensive-care units (NICUs) said they actively withdrew or limited critical care, including resuscitation, to babies thought to have a hopeless outcome.
Despite advances in medicine that make it possible to prolong the lives of very ill babies, 77% of NICU deaths occur as a result of decisions by doctors to withhold or withdraw treatment from premature babies born with congenital defects.
“It is a very difficult area,” said Brendan Murphy, a consultant neonatologist who last week endorsed new guidelines for Irish doctors treating critically ill infants and children.
Murphy, who is chairman of the neonatal sub-committee of the Irish Faculty of Paediatrics, which produced the report, said: “This study reflects what is happening on the ground every day of the week.
“Most parents want every effort made to save their baby, but unfortunately there are a small number of babies who just won’t make it. These decisions are very difficult, but sometimes it is more humane to withhold treatment. The welfare of the infant is at all times paramount.”
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End-of-life decisions within NICUs have been studied internationally, but there has been no data available until now on modes of neonatal deaths in Irish hospitals.
The topic is an ethical and legal minefield for paediatricians who fear it is only a matter of time before a right-to-life legal fight — like the British Charlotte Wyatt case — is brought before the Irish courts.
Wyatt, an infant who has been disabled since birth, is being treated at St Mary’s Hospital, Portsmouth. In February, a High Court judge ruled that doctors could let her die, despite pleas from her parents to keep her alive. Wyatt has since defied medical experts and is expected to leave hospital shortly.
Many doctors believe it is unethical to give intensive care to “futile” babies, but fear their humane decisions may be construed as involuntary euthanasia by parents and colleagues.
Almost half the doctors surveyed as part of the neonatal mortality questionnaire refused to give the reasons why babies had died in their care. There are no national guidelines on the right-to-die issues surrounding infants and young children.
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“It is a huge problem for parents and medical staff alike,” said John Murphy, a consultant paediatrician at Holles Street maternity hospital and editor of the Irish Medical Journal, which will publish the report.
“We are always hopeful, but you have to be realistic about a baby’s chance for survival. We do have miracle survivors and we give every baby a fighting chance. Compared with some countries, Irish doctors are very conservative.”
Premature babies who require months of intensive care have been the focus of an international row between medics, some of whom have labelled sick babies “bed blockers” and others who say babies born at 25 weeks and under should be refused treatment.
Earlier this year, the Royal College of Obstetricians and Gynaecologists in Britain caused an outcry when it said weight should be given to the economic considerations of “bed blocking” in neonatal units by “extreme preemies” — babies born between 22 and 25 weeks — half of whom have significant learning and physical disabilities by the time they reach school age.
In Holland, doctors do not routinely administer intensive care to babies born before 25 weeks of pregnancy. The Nuffield Council, a British think tank, is investigating the costs of raising the disabled children that premature babies often become as well as the expense of neonatal intensive care.
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Irish doctors say cost is not an issue, but concede that it is expensive to prolong the life of very ill babies. A neonatal intensive care bed costs about €1,500 a day and premature babies can require intensive care for weeks or months.
“As a mature society, we have to ask is it fair to keep these babies alive, and at what cost,” said Siobhan O’Sullivan, scientific director of the Irish Council for Bioethics.
Last year the council released details of a consultation that revealed that one-third of Irish adults believed the lives of severely premature babies should be preserved even if there is a risk they will have a very poor quality of life. Four out of five of these people felt parents should make the decision on whether to prolong life.