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Kerosuo, H. (2003). ‘Auctioned Orphans’ – Learning from patient experiences of ‘homelessness’ and ‘abandonment’ in health care provision. 3rd International Management Studies Conference. Critique and Inclusivity: Opening the Agenda. 7-9 July, 2003. Lancaster University Management School, Lancaster, Conference Proceedings.
Patients’ experiences of ‘abandonment’ and ‘homelessness’ tell what it is to be a patient in the present health care system. Experiences are analyzed as societal action from the activity theoretical perspective. The focus of the research is to discover what kind of experiences of ‘homelessness’ and ‘abandonment’ the patients report. Secondly, how the patients explain these experiences observed. Thirdly, the kind of learning challenges the experiences represent to the care providers was clarified. The patient experiences of ‘abandonment’ and ‘homelessness’ are studied through the research interviews as a part of ethnography. Altogether data from twenty-six patients is included in the analysis. Patient experiences are identified through keywords such as ‘abandoned’, ‘homeless’, and ‘cast-a-drift’ that the patients used when describing their relationship with their present care provision. I named the experiences described by the keywords according to culturally-derived metaphorical representations of ‘orphanage’, the lives of ‘auctioned paupers’, and ‘societal outcasts’.
The patient experience of ‘orphanage’ appears as feelings of uncertainty and un-trust in the care provision. Orphanage’ is represented as feeling a lack of professional concern, ‘not being cared for’, the provider is ‘not taking interest’ in the patient, or even ‘not looking after the patient’. Besides being an ‘orphan’, the patients are ‘cast adrift’, ‘in a state of emergency’, or simply ‘abandoned’. The experience of ‘orphanage’ seems to concern mainly the relationships between the patient and the providers, not the system of health care, or society. The system of health care and society are addressed in the experience of ‘of an ‘auctioned pauper’. The patients report a lack of coordination and overall responsibility in the care provision. According to some patients, the ‘system’ seems to deliver them to the ‘wrong care providers’, and some patients are being ‘tossed around’ between care providers. When patients explained the experience of ‘abandonment’ and ‘homelessness’ in their care, they excluded themselves as a pensioner, old patient, female and/or indigent. Consequently, the conduct of power, and the powerlessness of a patient emerges as social exclusion in these positions of ‘societal outcasts’. The patient rebellion indicates ‘breaks’, or ‘ruptures’ in the prevailing practice of care provision. As such they represent a change in the positions of those patients that receive care from multiple providers.
The study of the patient experience provides tools for the professionals in the analysis of the gaps during the care provision. Observation and working out the gaps in the care provision is a central part of the ‘negotiated knot. Moreover, the experiences of patients raise ethical and moral questions for the professional and public discussions. In many cases, paying attention to this kind of patient experience could even prevent the patients from claiming their rights through official patient complaints.
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