ArticlesMedical end-of-life decisions made for neonates and infants in the Netherlands
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the Netherlands issued a report on the different circumstances under which life-sustaining treatment may be withheld or withdrawn from neonates.3 It was recognised that there are very exceptional circumstances in which the intentional ending of life by administration of a lethal drug may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
References (20)
Death as an option in neonatal intensive care
Lancet
(1986)- et al.
No resuscitation and withdrawal of therapy in a neonatal and a pediatric intensive care unit in Canada
J Pediatr
(1993) - et al.
Forgoing intensive care treatment in newborn infants with extremely poor prognoses: a study in four neonatal intensive care units in the Netherlands
J Pediatr
(1996) - et al.
Euthanasia and other medical decisions concerning the end of life
Lancet
(1991) Decison making in the neonatal intensive care environment
Br Med Bull
(1996)Ethics and the care of critically ill infants and children. American Academy of Pediatrics Committee on Bioethics
Pediatrics
(1996)Doen of laten?
Grenzen van het medisch handelen in de neonatologie (To treat or not to treat? Limits for life-sustaining treatment in neonatology)
(1992)- et al.
Evaluation of the euthanasia notification procedure in the Netherlands
N Engl J Med
(1996) - et al.
Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990–1995
N Engl J Med
(1996) - et al.
Moral and ethical dilemmas in the special-care nursery
N Engl J Med
(1973)
Cited by (103)
Neonatal euthanasia in the context of palliative and EoL care
2023, Seminars in Fetal and Neonatal MedicineNeonatal euthanasia: Lessons from the Groningen Protocol
2014, Seminars in Fetal and Neonatal MedicineCategorizing Neonatal Deaths: A Cross-Cultural Study in the United States, Canada, and The Netherlands
2010, Journal of PediatricsAn analysis of the "slippery slope" of assisted death
2022, Revista Medica de ChileEnd-of-life decisions in neonates and infants: A nationwide mortality follow-back survey
2022, BMJ Supportive and Palliative Care