A survey of self-directed dying attended by proxies in the Dutch population

Abstract

Physicians may hasten death by medical decisions to end life (MDEL) that have been extensively researched. However, outside the medical domain, some individuals hasten their death by Voluntary Refusal of Food and Fluid while receiving some palliative care (VRFF) or by Independently taking Lethal Medication attended by a Confidant (ILMC). Both dying trajectories are more or less under the control of the individuals themselves. No survey data are available on how often these self-directed deaths occur in the Dutch population. We have isolated VRFF and ILMC from other dying trajectories in a population-based study employing after-death interviews with relatives, friends or nurses. Members of a research database that is representative of the Dutch population (n=31,516) were asked whether they had been a confidant in someone's decision to hasten death by VRFF or ILMC. In this sample, 144 deaths that conformed to our definitions were reported by proxies. We have computed an annual frequency of 2.1% VRFF deaths and of 1.1% ILMC deaths. The annual frequencies of VRFF and ILMC appear to be roughly the same as the yearly frequency of physician-assisted dying (1.8%). In seventy percent of those who had died by VRFF or ILMC, a diagnosis of cancer or a serious illness was reported by the informant. The proxies retrospectively described the self-directed hastening of death by both methods as a dignified death in about 75% of deaths. Both VRFF and ILMC require strenuous efforts and reflect a strong desire to control the process of dying. End-of-life research has shown that some control over the time of death is an important aspect of a 'good death' in western countries. We therefore presume that these self-directed methods for hastening death in consultation with proxies occur in other countries as well.