TY - JOUR T1 - Dialogue, death, and life choices: a parent’s perspective JF - Archives of Disease in Childhood JO - Arch Dis Child SP - 1314 LP - 1315 DO - 10.1136/adc.2005.084087 VL - 90 IS - 12 AU - Julia Glyn-Pickett Y1 - 2005/12/01 UR - http://adc.bmj.com/content/90/12/1314.abstract N2 - This article is based on a talk I gave at the Institute of Child Health, London, in June 2005. When preparing it, I visited the auditorium and when I first entered, it reminded me physically—with speakers placed at the front and rows of chairs arranged “to sit and listen” in a hierarchy stretched upwards to the back—of the pattern of conversation our family frequently experienced within our medical system. Through the uncertainty of Emelia’s illness, life, and death, the structure of these conversations was often mutually frustrating and unhelpful. Their linear shape, defined by the expert and scientific search for answers and solutions and unable to provide either, led us down many a dead end. The conversations typically involved a lot of talking, the expression of set opinions and flexing of positions, and rarely valued our mutual ability to listen, in the moment, with the attention of both heart and mind. Reflecting on the verbal content and pattern of these conversations, I am reminded of the words of the Buddhist Thich Nhat Hanh: “he who speaks does not know, and he who knows does not speak”. I am reminded too of the mother of another little girl, a child who today is happy and healthy, and how this mother wept in a group meeting arranged by the hospital concerned, at the memory of how she had been ordered to leave her critically ill daughter, so the doctors could “better do their job”; at how she was talked at, not with; at how she felt her power and expertise as a parent and mother denied. It doesn’t have to be like this. We—Emilia’s family and medical carers—managed to grope our way out of what seemed initially to be a kind of verbal darkness. We found through the relationships we built … ER -