Sharing values, sharing ends: A role for ‘value-proxies’ in substituted decision-making

Anson Fehross1

1 Centre for Values, Ethics and the Law in Medicine, The University of Sydney, Level 1, Medical Foundation Building K25, NSW, 2006, anson.fehross@sydney.edu.au

In recent years advance directives have been increasingly emphasised, in part due to a rise in prevalence of dementia and other progressive cognitive disabilities among Australian patients. Those championing directives often claim that they are vital for providing clinicians with the information required to make a decision which respects patient autonomy. Such documents have proven, however, to be an inadequate tool for clinical decision making, largely due to the inability of any one document (no matter how detailed) to adequately anticipate and address relevant clinical scenarios.

Bioethicists and government have often responded to this problem by suggesting that the appointment of a proxy decision-maker can bridge the gap between the directive and the context in which it is implemented. The role of a proxy, as commonly understood, is to draw upon knowledge of the patient’s past decisions and preferences and make the kind of decision that the patient would have made under the circumstances.

I will argue that this understanding of proxy decision-making is insufficient. I begin by defending the claim that the principle of respect for autonomy draws its normative force from the notion that autonomous decisions are expressions of patient values. Next, I claim that substituted decision-making requires a proxy to weigh the available options in the light of the values that the patient themselves would call upon. Finally, I will demonstrate that proxies will be best placed to do this interpretive work if they share key values with the patient, and hold them in much the same way. The role of ‘value proxy’, as I propose it, is an attempt to guarantee what we want out of an advance directive—that our values be honoured.


Biography

Anson Fehross is a PhD student at the Centre for Values, Ethics and the Law in Medicine at the University of Sydney. Anson joined VELiM in 2015, after completing an MSc at the Unit for History and Philosophy of Science (USYD).

His current project is an attempt to develop an account of proxy decision-making in medical and psychiatric contexts which emphasises the central importance of values. His research  draws upon metaphysics (especially the distinction between practical and personal identity), personal autonomy and ethics. His supervisors are Chris Ryan and Sascha Callaghan.