ABSTRACT
Clinical medicine has shifted from paternalism to models of care that emphasize respect for autonomy and “patient-centredness.” These ideals are embedded in clinical work as practical innovations like informed consent, shared decision-making, and patient education. Drawing on two studies of bone marrow transplantation, we show how tensions between ideal and actual practice are experienced by medical professionals. Tensions manifest as “blame games” and frustration and as “difficult scenarios” that arise where patients and professionals disagree. We argue that patient autonomy endures the rigours of illness and treatment in partial, distorted, and sometimes disruptive ways and that the scope of shared decision-making is bounded by legally protected zones of unilateral decision-making–notably, futility determinations, withdrawals of consent, and refusals of treatment. When it comes to formalizing ideal models of care, it is useful to know how principles and ideals take hold and the limits within which they are possible.
