The end of life presents the most challenging site of informal care in modern societies. Scholarly work in the area has tended to purport the value of participation in informal caring roles, at times reifying informal care as a virtuous social practice. Here, drawing on interviews with carers who are providing care in the last few weeks or days of life, I develop an understanding of informal care as a disruptive and often morally ambiguous social practice, framed by social relations of duty, virtue, reciprocity, sacrifice and stoicism, and often encapsulating experiences of failure, loathing and uncaringness, shame and guilt. Such a contradictory understanding of informal care as fraught has often evaded social scientists; a form of scholarly concealment linked to the valorisation of care in modern societies. Given broader structural conditions offering diminishing state resources and social conditions increasingly challenging relations of informal care, I argue for renewed critical analysis that reveals its nuanced character and that links everyday experiences to the changing social conditions within which it is produced/enacted.
Alex Broom is Professor of Sociology at the School of Social Sciences, UNSW Australia. He specialises in the sociology of health and illness and works regularly with a wide range of industry partners (e.g. hospitals, community groups) with a focus on understanding and improving people's experiences of illness and the delivery of healthcare. His program of research melds the conceptual richness of sociology with the value of applied, translational health research. He has published over 190 publications including 12 books and is an investigator on over AU$8 million in competitive research grants. He currently holds Honorary/Visiting Professorial positions at Brunel University, The University of Westminster, The University of Queensland and the University of Technology Sydney. He recently published a sole-authored monograph entitled ‘Dying: A Social Perspective on the End of Life’ (Ashgate, 2015) which offers a critical sociological examination of the different spheres of the dying process, drawing on qualitative fieldwork with patients, families and professionals in end of life care settings. He is currently working on a co-authored monograph entitled Bodies and Suffering: Emotions and Relations of Care (Routledge) with Ana Dragojlovic.