The experience of being next of kin to an older person in the last phase of life

Abstract

Being next of kin to an old person at the end of life means being a devoted companion during the transition toward the inevitable end, including the feeling of bearing the major responsibility and the need to be acknowledged by professionals. This study points to the importance of having access to professional care when it is needed, to complement and support the next of kin when his or her own resources and strength falter. This also includes support to enable the next of kin to remain involved in the care of his or her loved ones, thereby fulfilling their own wishes.

Having to focus on doing rather than being—Nurse assistants’ experience of palliative care in municipal residential care settings

“…Prior to the very last phase of the residents' lives, relatives were not included as important partners in the care, which in turn limited the possibility of building a trusting relationship that could develop over time. This is further supported in studies focusing on relatives' experiences, showing that relatives feel that they are not seen, and feel like outsiders (Andershed, 2006, Andersson et al, 2010, Brobäck and Berterö, 2003 which can mean that they become critical and distressed, feel unsafe and that they have to 'keep on eye' on both the resident and the staff (Whitaker, 2004). It thus seems important to increase the focus on relatives and their needs from the moment the resident moves into residential care, which involves acknowledging them as competent partners in care provision.…”

Palliative care services for people with dementia: A synthesis of the literature reporting the views and experiences of professionals and family carers

“…Being a carer at this time may entail bearing major responsibilities for the wellbeing of another person which may not be acknowledged by professionals. It is important for carers to have access to timely care and support to enable them to remain involved, to fulfil both their own and their family members' wishes (Andersson, Ekwall, Hallberg, & Edberg, 2010). This paper is an interpretive synthesis (Dixon-Woods et al, 2006) of opinions and experiences of a range of professionals and carers (care-givers), including medical practitioners, nurses, social care staff, family members and volunteers, of providing or observing palliative care (or its absence) for a person with dementia.…”

Confronting the Forthcoming Death: A Classic Grounded Theory

“…Embracing life show the importance of being with loved ones and enjoying life. Previous findings have similarly emphasized families' experiences of being present and living in the moment with their loved ones as a way of generating a sense of stability and peace [50]. Other studies pointed out how patients often seize the opportunity to live in the present as a way of "living while dying" and "dying while living" by celebrating life [51].…”