Autonomous Until the End. An Ethnographic Study of Needing to Control Death and Dying in the Netherlands.

Abstract

Based on an ethnographic fieldwork done at the Dutch “right to die” organisation in the Netherlands, I explore and discuss the Western perception on autonomy, identity, and independency in relation to old age. After about thirty years of debate, the Netherlands legalised assisted dying in 2002. The law was first and foremost for those who were terminally ill or had a chronic illness. The Dutch “right to die” organisation, NVVE, had an essential role in the legalisation of assisted dying in the Netherlands. With influence within politics and frequently having a place in the Medias spotlight, NVVE has grown to be an organisation that expands all over Netherland. are an essential part of this thesis. To be able to receive assisted dying, one needs to fulfil the due care criteria. Several groups within the Dutch society feels discriminated because of the criterions. By making the law available for those who experience unbearable suffering, the people diagnosed with dementia, individuals with a mental illness or those who are tired of life, are not able to request and receive assisted dying. The baby boom generation will be and are responsible for the biggest group of elders in our time. Their ideals concerning independency, identity, and autonomy tends to influence the way we think about our health and becoming old. What happens when these factors are threatened by old age? The fear of dying without autonomy, control, and identity has led to a new conception death. The fact that many Dutch citizens cannot reives assisted dying has led the NVVE to invent a new legitimised concept - the autonomous route. This method is especially relevant for elders in the fourth age. Consequently, the society could lose some of its diversity were the elders or people diagnosed with dementia will be ones who suffer. To be in control and keep autonomy are important factors when dying a good and dignified death. However, the need to state what is considered a “good” or a “bad” death has led the organisation to push boundaries.