Recent end of life care policy in the United Kingdom emphasises the importance of patient choice regarding place of care, and in particular promotes dying at home . This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person (we use the National Institute for Clinical Excellence’s  broad definition of family carers as people with a close social and emotional bond, not just those related by kinship or marriage). Within Europe there are estimated to be 100 million family carers whose contribution to care often exceeds the financial expenditures of their countries on formal nursing services, although it is difficult to estimate exactly how many are engaged in caring for a person near the end of life . Despite the important work that carers contribute, there is increasing evidence that they are often unprepared for the many demands they might face and that they experience considerable physical, psychological, social and financial challenges .
In the United Kingdom, 83.5% of all deaths occur in those over 65 years and evidence suggests that older people are ‘the disadvantaged dying’, with less access to health and social care services than younger people . There is a divergence in reported preferences for dying at home (approximately 50-60%) , and actual deaths at home (which happen for less than 20%), although there are marked regional variations. The recent End of Life Care Strategy  puts emphasis on enabling patients to make choices about place of care and increasing home death rates. However, there is a growing critique that these policies fail to acknowledge the needs and preferences of older people , and that older people themselves may not regard home deaths as feasible or appropriate [8, 9].
The availability of family carers able and willing to provide care at home is a key determinant in achieving a home death for cancer patients [9, 10] and a major reason for admission to hospital is breakdown in family care. While this central role for carers is increasingly recognised, knowledge gaps remain about how to provide appropriate support to them during the dying phase . When the home becomes the site of care for dying older people, the relocation of care work from institutional to domestic settings can create tensions between home and these types of work environments that can fundamentally challenge the meaning of home. Formal care workers, such as nurses and care assistants, need workspaces that are clean, hygienic and efficient for the purpose of delivering care . This frequently requires the reorganisation of domestic space to accommodate the ‘paraphernalia of care’ , (for example, a hospital bed, commode, syringe driver, etc.). Whilst such artefacts are routinely available in institutional settings, these spaces can be organised to conceal some of the more disconcerting features in ways that cannot be easily achieved in domestic settings . There has been only limited investigation of the ways in which the importation of artefacts associated with institutional care can affect the meaning attached to the domestic home [8, 15]. Yet older people and their carers are unlikely to welcome the reordering of the home as a clinical work space, instead placing value on the home as a private, comfortable and aesthetically pleasing space that is imbued with personal memories and a sense of history and belonging .
The differing requirements of home and work for older people, informal and formal caregivers mean that the physical and symbolic meaning of the home must constantly be negotiated as both a site of care and of social and personal life. The significance of home as a social space, for example, points to why healthcare providers may encounter resistance from older people and their families in their attempts to reorganise domestic settings to accommodate the end of life care needs of the care-recipient  (for example the provision of Hospice at Home services). Hence the desire to improvise or subvert the logics of care-aids in order to retain a sense of home produces an ambiguity of place for both carer and care recipient – one that brings home and care into tension as the aesthetics of health care systems jostle against the aesthetics of home.
So while professional care within the home may be beneficial to the carer and care-recipient, they also transgress the social space and ‘normal’ domestic functioning of the home, creating a change in the meaning and sense of home. Work around end of life care and ‘place of death’ [8, 9, 17] suggests that whilst older people may initially prefer to be cared for by carers within the home, as levels of care needs intensify, the nature of home changes such that many would prefer to be cared for elsewhere. Any attempt to understand the implications and experiences of policies designed to support the home death for older people and their family carers thus brings into focus the complexity of the home both as a site of social interaction and personal meaning – and as a site of care that brings both the public and the private into tension . These ‘felt’ changes in the home environment may have important embodied health and psychological effects for family carers.
The ‘Unpacking the home’ study was designed with the primary aim of gaining an in-depth understanding of ‘home’ and the issues faced by family members caring for a dying older person at home. Through the accounts of bereaved family carers this research will also examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths and how they impact on family carers during the period of care and into early bereavement. The specific objectives of the study are:
To elicit the accounts of family carers about witnessing the dying in the home of an older person;
To elicit views about the practical and other types of support that made this possible and their sources;
To elicit views of deficits or gaps in support;
To identify how the social and emotional ‘space’ of home is transformed during the process of care-giving, and how this is ‘felt’ in an embodied sense;
To elicit perceptions of how the dying process and associated memories have impacted upon the use and feelings about ‘home’ during early bereavement; and
To critically evaluate these carers’ accounts to identify the practical benefits and drawbacks of current policy, especially for family carers and dying older people.