Sheila Payne and Jane Seymour
It might strike readers as rather strange to start at the beginning of a patient's experience of illness when palliative care is usually thought of as being about services provided at the end of life to people with a serious illness like advanced cancer. We have already challenged this view in the Introduction by examining new and emerging models of palliative and supportive care. This chapter explores what it means for people who become ill to take up the social role of 'patient' and the implications this has for family members and friends who will be designated as 'carers' or 'care-givers'. We examine various perspectives on the self and introduce models of illness drawn from anthropology, sociology and psychology. In each case, we examine how they inform our understandings of palliative care nursing and how they have influenced the development of palliative care both over time and across geographical boundaries. In addition, we draw upon current conceptualizations of palliative care to consider how very ill and dying people are perceived by different societies, how the 'good death' has been constructed and reshaped over time, and what is considered to be 'normal' care for those with end-stage disease. For example, in developed societies, people with diseases such as heart failure are more likely to be treated with intensive medical and nursing interventions like artificial ventilation in intensive care units right to the end of their lives, whereas others with conditions such as dementia are less likely to receive such treatments (Seymour 2001).
In the latter part of this chapter, we discuss the impact of disease and illness upon those people who are in close relationships with the ill person. These are usually assumed to be family members or relatives, but the changes wrought by divorce, geographical mobility, increased longevity and declining birth rates may mean that friends or employed care workers provide more significant and meaningful relationships. Human beings are social animals and are embedded within social systems, kinship networks and cultural groups: the lack of such networks is potentially problematic for those reaching the end of their life, particularly the socially excluded, such as