ABSTRACT
The men and women in our study had been forced to address difficult questions about treatment limitation. Theirs were not theoretical opinions but those acquired through bitter experience: they should be heard. Although many parents expressed their amazement at the capabilities of modern medicine, one father felt that things might be simpler and better if the technology did not exist for such heroic measures in some instances. Three main reasons were given for withholding treatment – if the child was severely damaged, if death was inevitable, or if the baby was suffering Although only nine families (15%) specifically cited suffering as a reason to stop treatment, many more expressed their anxieties about the effect on babies of aggressive treatment and prolonged damaged lives. Clearly the family suffered, too, but this was always a secondary consideration. Although rigid boundaries could not be set, the clearest concept to emerge was that of dependence.
