Monday 4th July - Thursday 7th July 2005
Mansfield College, Oxford

Conference Programme, Abstracts & Papers

Session 4: Patient Autonomy, Social Justice and Social Systems
Chair: Betty Bednarski

Disease in the Information Age
Laura K. Kerr
Institute for Research on Women & Gender, Stanford University, Stanford, CA, United States of America

In the 1960’s, Georges Canguilhem wrote an addendum to The Normal and the Pathological in which he addressed the impact of conceiving life according to the concepts of information theory. He described a new social order in which the concepts used to articulate disease are as significant for determining health as the diseases themselves. According to Canguilhem, health is no longer “life lived in the silence of the organs,” as the French surgeon René Leriche stated in the nineteenth century. Instead, it is now plagued by the necessity of the continual search for information about disease. No longer are we truly healthy, since we can never abandon our anxiety about being diseased; we now know health only in relation to the possibility of falling ill. The person in this conceptual environment, Canguilhem argued, suffers from chronic health in which “the menace of disease is one of the components of health.”
This paper presentation outlines Canguilhem’s conception of chronic health and discusses its occurrence forty years after his original depiction. While his characterization of chronic health remains accurate, the situation is nevertheless changed by the sheer amount of information now available, the accessibility of this information to consumers via mass media and the world wide web, as well as rapid changes in conceptions of health and disease that require an almost hyper-awareness of medical advances. Living with uncertainty about health and disease has become an unquestioned norm as people reflexively ask themselves ‘Am I that disease?’ in their encounters with medical information. Unforeseen by Canguilhem, medicine has come to rely on consumers’ reflexive responses for its own production of knowledge. As a result, medicine has become reflexive like the people it treats, a point that is explored in this depiction of chronic health in the new millennium.

The Discursive Production of ‘Solidarity’, ‘Health’ and ‘the Patient’ – The Case of the German Health Care System
Sebastian Bechmann
Graduiertenkolleg 'Märkte und Sozialräume in Europa', Otto-Friedrich-Universität Bamberg, Bamberg, Germany

This paper deals with some ways in which discourse impact on social production of ‘solidarity’ and ‘health’ taking policy in respect of health care insurance system in Germany as a case in point. General models often see welfare policy only as a response of functional needs or as the result of conflicts, but mostly neglect the influence of discourse on policy: there is not only one response to functional needs and there is not only one possible result of conflicts. This paper points to this aspect of welfare policy. For identifying continuity and/or stability the analysis covers – as a first step – an reconstruction of the legislation of health care system in Germany such as it is told by the dominant socio-historical discourses in the view back. Like an archaeologist it identifies – using existing literature – the historical discursive foundation as well the institutional cornerstone the discursive formation of ‘solidarity’ and ‘health’ is built on. The result of this analysis is the discursive produced and mediated ‘historical truth’ subject to our present understanding. As the second step this ‘historical truth’ will be constrasted with the present discursive production of ‘solidarity’ and ‘health’ in the German health care syteme taking the last projects reforming the German health care system. This paper uses a relational perspective of the German health care system. This perspective sees institutions – as the health care system is one – as arrangements of political regulations of social relations. So the historical produced social relations and the discursive produced and mediated conceptions of the right social order determine both the point of view the German health care system is analysed. This paper tries to answer following questions: Which institutional structure of meaning can be identified in the German health care system (concepts of ‘solidarity’, ‘health’ and ‘the patient’)? How these structure are produced by political discourses (procedures, actors)? How they are be able to affect social structure (social relations between relevant social actors)?

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On My Own?: Where Autonomy Ends and Justice Begins
Alison Roberts Miculan and Lisa Schwartz
Department of Philosophy and Health Sciences, and Department of Clinical Epidemiology and Biostatistics, McMaster University, Canada

It is an interesting irony that the Hippocratic Oath does not contain the words "First Do No Harm", yet it remains the most commonly "cited" phrase from the oath. Perhaps this is because physicians, in fact do harm all the time. They cut into the body, administer foreign elements, poke, prod and otherwise intrude. But all of this is justified by the fact that the physician's "harms" are sought out by autonomous agents, and by the greater good of health that these harms are intended to procure. Indeed, the intention behind most of the treatment is assumed to be restoring autonomy to the recipient.
Autonomy, then, is fundamental to the ethics of healthcare provision.  This move is well intentioned but flawed because it places the burden of complex decision-making on the individual seeking help and implies that her choices will be exclusively self-regarding with limited relevance to the impact of the decision on others and the impact of others on the decision. Individuals are thus being asked to act autonomously just as they are at their most vulnerable and in the face of highly complex information. Moreover it is assumed that the individual is able to act voluntarily, rationally and free from social necessities such as responsibilities to loved ones and colleagues, or economic and social pressures.
We maintain that even a relational-autonomy model does not go far enough in reflecting the complexity of the patient's context and that a social-justice model would be more appropriate. We also maintain that the multi-faceted obligations of healthcare providers not only to individual patients, but broader communities requires the expanded perspective that a social justice model would facilitate.
Certainly the most serious concern with a social-justice model may be that patient autonomy will be compromised in favour of an overarching social good, but we argue that, by including a comprehensive notion of rights, individuals can be protected from the tyranny of the majority.