Living well, dying badly

"What people are afraid of is dying badly rather than actually dying". Inaki Olaizola has observed how Basque society feels about euthanasia and the process of dying, and how the perception has changed since the 1970s. For this purpose, he interviewed all kinds of people and has been able to conclude that the fear of dying badly is widespread. In his thesis, defended at the University of the Basque Country (UPV/EHU), he stressed the need to guarantee a dignified death by means of legislation: "We in the Basque Country, and in the West as a whole, basically live well, but we die badly. And this is something that can be improved". His work his entitled Transformaciones en el proceso de morir: la eutanasia, una cuestión de debate en la sociedad vasca (Transformations in the process of dying: euthanasia, a matter for debate in Basque society). As it was a piece of anthropological research, the in-depth interview was the most significant technique in this work. Specifically, Olaizola interviewed fifteen Basques: "The sample is made up of more women than men. The fact is, as people live longer the need for care has also increased, and women have always shouldered greater responsibility in this task." He chose ordinary people, in other words, he did not set out to interview people with specific knowledge about euthanasia or about the processes of dying. "It is everyone's concern; the process of dying is not something exclusive to specialists, let alone doctors. Once certain decisions have been taken, the doctor is essential, but as far as the reflection, the debate, the value of the life, the point of it, etc. is concerned, it is not the responsibility of the doctors, but of everyone," he explains. From the traditional to the biographical Olaizola has studied the process of dying by dividing it into three phases: disease and dependency, dying, and the ritual that takes place following death. As he explains, the three phases have undergone profound changes over the last few decades. Basque society has evolved from the traditional model to the "biographical" one. As the author points out, "in the traditional one religion exerts a tremendous influence, we have to go on living for as long as God wants. Death is understood as a long process, like a part of life. We do not have control over our lives. But then appear people who start to reflect more deeply and who are aware of their own lives. New ethics, models and practices emerge... I call that the biographical model." In other words, to take control of our life and death. As this piece of research concludes, the turning point between the two models takes place in the 1960s and 1970s. This is due to various changes. As regards social changes, Olaizola points to demographic evolution and the increase in life expectancy: "Now it is expected that we will be dependent for five or six years before we die. Dependency signifies a need for extreme care which usually results in a terrible burden for women. What is more, the family setup has changed; in the past, up to three generations used to live under the same roof." In any case, Olaizola says that cultural changes have exerted the greatest influence on the evolution in the way we perceive death. He refers to "reflexive individualisation" as a clear example of this change. In other words, our health is our own affair, so there is no reason why it should be other people's responsibility: "The right not to care emerges. It asserts that people, above all women, are not obliged to look after patients to such extremes, that they are people and that they have to live." Legislation is also ushering in that cultural change, as in the case of the Spanish Law on Patient Autonomy (2002): "Each person is the owner and master of his or her own process, the medical system is not authorised to look after you if you do not want it to. The cultural change is huge: our autonomy has turned into the fundamental principle. And another important change as far as the legislation is concerned is the possibility of drawing up a declaration of advance directives, in which you can specify, for example, your wish not to go on living beyond a specific point." No to suffering Nevertheless, Olaizola concludes that there remains much to do in legislation; in the process of dying as well as in the burden shouldered by the carers. In connection with this last point, he highlights what was said by the women interviewed for the research: "They in particular do not want their relatives to look after them during their years of dependence. They suffered so much when it was their turn to be the carers that they do not want a similar burden placed on their daughters. They would rather go into a nursing home." Apart from the exceptions mentioned already, the author of this thesis has complained that there is a great lack of specification as far as the legislation is concerned. He says that "a huge step" has to be taken: "Nowadays no one attaches redemptive value to suffering. All the people I interviewed said that pain is unnecessary and that it has to be eliminated. Legislation has to be passed on that right to a dignified death, there must be guarantees. The quality of death needs to be improved because it is still bad."