Figures of Hope in Supporting Terminally Ill Relatives

The ‘end-of-life’ notion doesn’t really make any sense to relatives who take care of a seriously ill person, even when the latter suffers from a life-threatening disease. The risks of aggravation of the physical or mental condition and the bare perspective of death always go hand in hand with a kind of hope that organizes the horizons of thinking and influences the ways of acting. This term of ‘hope’ does not here refer to afterlife or religious representations. Rather, it refers to an analytical category useful for understanding the ways these close relatives support the ill person as well as the relational balance between all the individuals concerned: as early as a diagnosis of a potentially fatal condition is made, what kind of emotions are suitable to be shared with the ill person? Is it necessary to intensify one’s presence? Is it appropriate to communicate openly with children, friends or coworkers? For how long? And on which grounds is it possible to assess the consequences of actions taken and attitudes adopted during this period of time filled with uncertainties? This presentation will address these questions. It is based on an ongoing empirical research, entitled “Supporting a dying relative: between working and end-of-life care” (September 2012 – August 2015) and financed by the Swiss national science foundation, through its national program on end-of-life (www.nrp67.ch). Drawing from about sixty in-depth interviews with informal carers who conciliate their professional activity and the support of their ill relative, this communication aims at presenting an analysis of how the various components and forms of the ‘hope’ category segment and organize the day-to-day life during this period of temporary vulnerability, a period that can be obviously associated with the ‘end-of-life’ denomination only after the ill person’s death.