Spain's Roma community has its own cultural and moral values. These values influence the way in which end-of-life decision-making is confronted. The objective of this study was to explore the perspective of Roma women on end-of-life decision-making. It was a qualitative study involving thirty-three Roma women belonging to groups for training and social development in two municipalities. We brought together five focus groups between February and December 2012. Six mediators each recruited five to six participants. We considered age and care role to be the variables that can have the most influence on opinion regarding end-of-life decision-making. We considered the discussion saturated when the ideas expressed were repeated. Data analysis was carried out according to five steps: describing, organizing, connecting, corroborating/legitimating, and representing the account. The main ideas gleaned from the data were as follows: (1) the important role of the family in end-of-life care, especially the role of women; (2) the large influence of community opinion over personal or family decisions, typical of closed societies; (3) the different preferences women had for themselves compared to that for others regarding desired end-of-life care; (4) unawareness or rejection of advance directives. Roma women wish for their healthcare preferences to be taken into account, but "not in writing." The study concluded that the success of end-of-life healthcare in Roma families and of their involvement in the making of healthcare decisions depends upon considering and respecting their idiosyncrasy.
La aprobación de la ley de eutanasia supone un reto para la medicina y culmina un proceso de maduración cívica de la sociedad ante el morir. Existen desafíos que la aplicación de la ley deberá solventar. Buscar una solución médica objetiva e irreversible a un sufrimiento subjetivo, donde pueden existir determinantes sociales condicionantes, implica un grave riesgo de inequidad que requiere políticas que establezcan un marco pre-decisional garantista. La eutanasia debería ser una excepción gracias a la existencia de fuertes salvaguardas clínicas, informativas y relacionales que solo pueden garantizarse en el contexto de una atención primaria solvente que acompañe a las personas a lo largo de sus vidas. En este contexto primarista y comunitario, la eutanasia puede ser el último recurso de un profesional comprometido con el no abandono de un paciente con sufrimiento grave e irreversible que la solicita.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.