RESUMO
OBJECTIVE: To establish whether the practice of end-of-life decision-making for neonates and infants under the age of 1 in the Netherlands in 2000 was different from that in 1995. DESIGN: Retrospective descriptive and comparative study. METHODS: In both years, all deaths of children under the age of one year that took place in August-November (1995: n = 338; 2001: n = 347) were studied. The response rate was 96% in 1995 and 84% in 2001. The questionnaires which were sent to the physicians who reported the deaths, included structured questions about whether or not death had been preceded by end-of-life decisions, i.e. decisions to withhold or withdraw potentially life-prolonging treatment or to administer (potentially) life-shortening drugs, and questions about the decision-making process. RESULTS: The proportion of end-of-life decisions increased slightly from 62% to 68% of all deaths in the first year of life, but the difference was not statistically significant. The large majority of these decisions involved withholding or withdrawing life-sustaining treatment. The frequency of decisions to actively terminate the life of an infant who was not dependent on life-sustaining treatment remained stable at 1%. The proportion of decisions that had been discussed with the parents increased slightly, from 91% in 1995 to 97% in 2001; similar percentages of the decisions had been discussed with other physicians. The percentage of decisions that had been discussed with the nursing staff decreased from 40 in 1995 to 28 in 2001. CONCLUSION: The findings suggest that the practice of end-of-life decision-making in neonatology was rather stable between 1995 and 2001. The frequency of the active termination of life had not increased, despite the new euthanasia regulation in the Netherlands.