Family members' perspectives on potential discussions about life prolongation for their older relatives

Abstract

Family members (or health-care confidants) of incapacitated patients are often consulted by doctors when making life-prolongation decisions. Little research has been conducted on confidants' views on life prolongation and advance care planning. This study investigated the health-care confidant's view on life prolongation and their involvement in being a potential decision-maker for their relatives in the event of incapacitation. Confidants (N ¼ 12) were interviewed and interviews were analysed using Interpretative Phenomenological Analysis. The analysis revealed three themes relating to their perception of being a potential decision-maker for a relative's life prolonging measures: ''good'' and ''bad'' death based on past experience and perceptions of quality of life, a sense that discussions were inappropriate at present, and strategies which might be used to encourage discussion. The implications of these findings for family involvement in life-prolongation decisions and how to encourage family discussions about life prolongation are discussed.

“I just think that we should be informed” a qualitative study of family involvement in advance care planning in nursing homes

“…In line with this, Brown and Walter [55] argue that if end-of-life care shall be truly ‘holistic,’ the need to see dying patients as well as their relatives as “fully social beings, living, dying and caring within naturally occurring social networks” (p. 2378) is essential. Even if we have studied only nursing home patients and their close relatives, we find that both groups talk about a bigger circle of significant relatives and friends [56]. …”

“…Drawing on past experiences of the suffering and death of others can also be a way of talking about ‘good’ or ‘bad’ deaths. Garnett et al [56] describe how confidants (relatives) tended to draw on their past experiences with illness and death when thinking about what might be acceptable when it came to questions concerning life-prolonging treatment, and the authors conclude that powerful past events affect relatives’ understanding and thinking.…”

Understanding gender differences in older people's attitudes towards life-prolonging medical technologies

“…The paper analyses data collected as part of a larger UK study on the attitudes and values of healthy older people and their confidants regarding the use of life-sustaining medical technologies (Vandrevala et al 2006, Garnett et al 2008. Older men and women living in the community in south-east England were recruited from four general practices with socio-economically diverse populations.…”

A scoping research literature review to assess the state of existing evidence on the “bad” death

“…Another category of commonly identified factors for bad deaths was sudden and unexpected death, which was considered bad by a number of sociocultural and other groups (Borbasi et al, 2005; Costello, 2006; Good et al, 2004; Hanson et al, 2002; Joarder et al, 2014; Kim & Lee, 2003; Ko et al, 2013; 2015; Garnett et al, 2008; Pierson et al, 2002). Sudden and unexpected deaths were considered bad because there was little or no opportunity to prepare for the death and ensure that a good death occurs (Adesina et al, 2014; Borbasi et al, 2005; Costello, 2006; Good et al, 2004; Luxardo et al, 2014; van der Geest, 2004; Vig et al, 2002).…”