‘On being both professional and human’: one woman's journey

Abstract

Introductory note by Paul Komesaroff The following reflection was written by the wife of a patient who died in the intensive care unit of a large public hospital after a stay of nearly 5 months. The author has chosen to remain anonymous to protect her privacy.The article is presented because we believe it offers deep insights into the experiences of relatives and other carers of patients with serious illnesses. Caring for carers or relatives is usually considered to lie outside the boundaries of the doctor–patient relationship. Although meticulous attention is often given to providing information and consulting about medical decisions, clinicians rarely consider that they have a responsibility to those closest to the patient, even though it is these people who will carry the burden of the experiences of the illnesses of their loved ones, perhaps for many decades.Clinical communication is concerned not only with the transmission of information. It is not a purely formal process of conveying facts or data. It is also about engaging another person in a dialogue about fears, uncertainties and hopes and, where appropriate, negotiating with him or her about priorities, goals and values. In many cases the perceptions of the health‐care team are very different from those of patients and their relatives; accordingly, there may be no way of avoiding the need for such dialogue and negotiation.This article draws attention to the importance of ‘recognition’ as an ethical act: recognition of the roles carers and relatives play in the lives of their loved ones, and of the pain and loss they themselves are suffering. When a physician cares for a patient it is not just an isolated individual who is being treated but the full, complex network of social relations in which he or she is embedded.Recognition also entails acknowledgment of error or of bad outcomes. In the world of someone undergoing bereavement, such acknowledgment might acquire great intensity. Small gestures can make a big impact. Where appropriate – for example, in the case of an adverse outcome – a formal apology, independent of any admissions of legal liability, may play a powerful therapeutic role. This article emphasises the fundamental healing potential of the apology.The voices of patients and relatives must be acknowledged and interpreted in their proper contexts. It is not suggested here that these expressions are of greater validity or authenticity than the perspective of the medical team. Nor should they be regarded as demonstrating the existence of a pathology within the psyches of patients and relatives that can only be understood through the instrumental discourses of medicine1. Rather, as this case demonstrates, patient narratives constitute a supplement to the medical ones, but also offer a commentary on them and provide insights from which clinical practice can be enriched and refined.