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In their recent article, Das and Mulley (September 2005 JRSM1) highlight the value of an ethics history—a questionnaire to clarify with patients their preferences for information and for involvement in future healthcare decisions. In doing so, they have identified an important preliminary step in the process of communicating information and reaching decisions; that of establishing the patient's preferences for information and involvement. Clinicians widely recognize this necessity, and the original ethics history described by Sayers and colleagues2 was developed in a clinical context. Despite this clinical awareness, most research has focused directly on the communication and decision-making itself, with little exploration of the role of patient preferences in this area.
We have evaluated such an ethics history, developed from that of Sayers and colleagues,2 with hospice inpatients: an evaluation that is shortly to be published in the Journal of Medical Ethics.3 One of the major ethical questions raised by the use of such a questionnaire is the extent to which patients are able to decline information, if that is their preference. A variety of government initiatives are leading to greater public expectations of choice and autonomy.4,5 An underlying assumption of these initiatives is that better information and more choice is desirable. In general, we welcome the move from a more paternalistic approach to greater respect for autonomy—but it is important to recognize that it raises a number of ethical issues. This is especially true in palliative care; in our study, over 30% of patients preferred limited or no information about their illness and treatment.3 Patients are often trying to process difficult and distressing information in a way and at a rate they can manage. This can leave the healthcare professional in a difficult position when trying to gain the necessary informed consent for an intervention when the patient has previously identified that such information may be harmful to them.
These are issues which concern clinicians on a daily basis. The use of an ethics history (or patient preference tool) in our study did lead to improved patient satisfaction,3 but wider ethical debate about the costs and responsibilities associated with increased choice and autonomy needs to take place, as well as further research on understanding patient preferences for information and involvement in decisions.