Elsevier

The Lancet

Volume 350, Issue 9073, 26 July 1997, Pages 251-255
The Lancet

Articles
Medical end-of-life decisions made for neonates and infants in the Netherlands

https://doi.org/10.1016/S0140-6736(97)02315-5Get rights and content

Summary

Background

Advances in neonatal intensive care have lowered the neonatal death rate. There are still some severely ill neonates and infants, however, for whom the application of all possible life-prolonging treatment modalities may be questioned.

Methods

We did two studies in the Netherlands. In the first we sent questionnaires to physicians who had attended 338 consecutive deaths (August-November, 1995) within the first year of life (death-certificate study), and in the second we interviewed 31 neonatologists or paediatric intensive-care specialists and 35 general paediatricians. The response rates were 88% and 99%, respectively.

Findings

In the death-certificate study, 57% of all deaths had been preceded by a decision to forgo life-sustaining treatment; this decision was accompanied by the administration of potentially life-shortening drugs to alleviate pain or other symptoms in 23%, and by the administration of drugs with the explicit aim of hastening death in 8%. A drug was given explicitly to hasten death to neonates not dependent on life-sustaining treatment in 1% of all death cases. No chance of survival was the main motive in 76% of all end-of-life decisions, and a poor prognosis was the main motive in 18%. The interview study showed that parents had been involved in making 79% of decisions. The physicians consulted colleagues about 88% of decisions. Most paediatricians favoured formal review of medical decisions by colleagues together with ethical or legal experts.

Interpretation

Death among neonates and infants is commonly preceded by medical end-of-life decisions. Most Dutch paediatricians seem to find prospects for survival and prognostic factors relevant in such decisions. Public control by a committee of physicians, paediatricians, ethicists, and legal experts is widely endorsed by paediatricians.

Introduction

Medical decision-making about the end of life for neonates and infants is under debate in the Netherlands. In 1995, 190 000 babies were born alive in the Netherlands, and 1041 died within 1 year of birth. The neonatal death rate in the Netherlands is among the lowest in the world, which reflects favourable economic circumstances and high-quality health care for mothers and children. 29% of neonatal deaths occurred on the day of birth, and another 28% occurred within 1 week. Of all babies who died during the first week of life, 9% were born at gestational ages of less than 25 weeks, and 37% at gestational ages between 25 and 30 weeks. The cause of death was a perinatal disorder (such as perinatal asphyxia or complications of low birthweight) in 48%, and congenital malformations in 34%.

Although advances in medical knowledge and in neonatal intensive care have increased the possibilities of treating seriously affected infants, whether the application of every possible technique in all circumstances is appropriate is questionable.1, 2 For neonates who are seriously ill and have a very poor prognosis for neurological function, the benefit of extending life is doubtful. In 1992, the Paediatric Association of the Netherlands issued a report on the different circumstances under which life-sustaining treatment may be withheld or withdrawn from neonates.3 It was recognised that there are very exceptional circumstances in which the intentional ending of life by administration of a lethal drug may be considered; the administration of potentially life-shortening drugs may be necessary for adequate terminal care. The intentional ending of life should, under Dutch law, be reported to the coroner to enable judicial examination. In 1995, three cases of intentional ending of life in neonates were reported.4

The Netherlands has 110 general hospitals that provide clinical paediatric care. Eight university hospitals and two large general hospitals have neonatal intensive-care units. Paediatricians attend about 80% of all hospital deaths among neonates and infants.

The aims of the present study were to give an overview of practices and attitudes about end-of-life decisions for neonates and infants in the Netherlands. The study paralleled an assessment of the judicial notification procedure for physician-assisted death, and was commissioned by the ministers of health and of justice.4, 5

Section snippets

Methods

We did two studies. In the first study we sent questionnaires to physicians who attended 338 consecutive deaths of neonates and infants to obtain estimates of the frequency of end-of-life decisions and their main characteristics. In the second study we interviewed 66 paediatricians in a stratified sample to obtain descriptions of the patients, physicians, and situations involved, and to investigate opinions about public control in end-of-life decision-making among Dutch paediatricians.

Death-certificate study

Of all deaths among children aged under 1 year in this study (n=299), 36% occurred in a neonatal intensive-care unit, 51% in a hospital but not in a neonatal intensive-care unit, and 14% not in hospital.

In 24% of cases, death occurred suddenly and unexpectedly, and in 14% treatment was continued until death. In the remaining 62%, an end-of-life decision preceded death. This percentage varied with the place of death; for neonatal intensive-care units it was 87%, for deaths in other hospital

Discussion

This overview is based on two national studies with high response rates. The willingness to cooperate in this study may have been increased by letters that were sent before the start to all paediatricians by the president of the Royal Dutch Medical Association and the Chief Inspector for Health Care, and by the president of the Paediatric Society of the Netherlands. These letters explained the aims of the studies and emphasised the importance of cooperation. Immunity from legal prosecution was

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