Patient Education and Counseling 88 (2012) 354–355
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Reflective Practice
Hidden beauty§ Thorsten Langer a,b,* a b
Helios Centre Wuppertal, Children’s Hospital, Wuppertal, Germany Witten/Herdecke University, Department of General Practice and Family Medicine, Witten, Germany
A R T I C L E I N F O
Article history: Received 14 November 2011 Received in revised form 6 January 2012 Accepted 7 February 2012
She was the first patient this morning and I saw her already waiting as I unlocked my office prior to starting my work day. She was sitting in the waiting area which was still abandonded and would soon be a lively place filled with playing children and their caregivers. The baby that I was supposed to examine soon was in the pram in front of her. The woman had a slightly stooping stature, dry dishevelled hair, wore glasses, a yellow, bloomy shirt and brown pants. She looked older than most of the mothers we usually talk to in the developmental clinic to follow up former pre-term or at-risk babies. When I asked her to come in, she came over and I got a closer impression. I realized that her skin was covered with dark spots, small scars and little knots on her arms and her face. Her voice sounded twanged. Her appearance made me step back and I must admit I felt a bit repulsed in the first instant which was not yet controlled by my professional attitude. Then, I wondered what the reason for presenting her child would be. Would her appearance be of any relevance for the consultation? And if so, how should I address it? We sat down and she took her three-month old baby out of the pram, held her in her arms as we started talking. The girl, let us call her Emma, did not look at all like her mother. Her skin was smooth and even, her hair was brown. Her large dark eyes seemed to search the room and became attracted by the bright window. Emma was a beautiful baby. She was relaxed, calm and looked perfectly healthy and normally developed at first sight.
§ For more information on the Reflective Practice section please see: Hatem D, Rider EA. Sharing stories: narrative medicine in an evidence-based world. Patient Education and Counseling 2004;54:251–253. * Correspondence address: Helios Centre Wuppertal, Children’s Hospital, Heusnerstr. 40, 42283 Wuppertal, Germany. Tel.: +49 202 896 3792; fax: +49 202 896 3848. E-mail address:
[email protected].
0738-3991/$ – see front matter ß 2012 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2012.02.007
When taking her history it became clear that mother and father both had Neurofibromatosis Recklinghausen, a genetic disorder characterized by exaggerated growth of fibroblasts in different sites of the body. I realized now that this was the reason for her appearance. My initial reaction of revulsion was transformed by this information. Her appearance – and thereby herself – became a medical condition and less of an aesthetic and relational challenge. The idea of fibroblasts caught my attention and provoked questions of possible complications. I started thinking about what I needed to pay attention to in Emma’s physical examination. Emma’s mother told me that she had been diagnosed as late as age 30 and received laser treatment of her skin nodules after three decades of not knowing why she looked differently than all other people around her. The scars were results from the laser treatment. Fortunately, she continued, she had no other manifestations of neurofibromatosis, no knots in the brain or other organs, no other symptoms. She was well informed about her condition and told her story in simple words, calm and with dignity. I guess she was used to knowing more about her condition than most doctors she encounters. As she told me her story she was holding Emma on her lap. As she realized my interest in (and limited experience of) her condition she offered to show her scarred back as she rightly assumed that I had never seen such an impressive clinical finding before. The reason of her visit she ended was to find out whether her baby-girl had Neurofibromatosis, too. While she shared her story and her concern about Emma my inner relation to her changed yet again. Listening to her words and seeing Emma so close to her looking around I became aware of what being the mother of Emma may mean to her and how deep her concern may be rooted. The fibroblasts on my mind were suddenly gone. Instead I could see her love for little Emma, at least I could clearly feel it. It was simply beautiful and I was touched by this moment. The examination of Emma revealed no signs of the condition and I recommended a re-evaluation in six months. When she left I thanked her for coming and her openness in talking to me. I would be glad to see her again in my clinic, I said. Probably yes, she replied, and left with Emma in the pram. All these changes in how this mother appeared to me became clear to me days after the encounter. I feel fortnuate having met her. Indeed, this was one of the special moments of being a paediatrician for me. But what was so special about this encounter? I think it revealed in a very short time several modes of perception that are characteristic of being a physician, that strongly influence our relationship with patients and that make
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this profession so rewarding. In the following section I want to explore this further. In the beginning there is the routine of an appointment: the first – yet unknown – patient in the morning. We meet as strangers in our roles as mother and primary caregiver of the baby and as doctor, respectively. Role expectations form our encounter before we even say the first ‘‘hello’’. We assume that she will seek advice and that I will try to help her [1]. My own unfamiliar feeling with regard to Emma’s mother was even more pronounced by her marked appearance. Thus, we start our conversation in a formal and routine manner as we both were probably pretty used to. In the instant she told me her diagnosis, another mode of perception took over. In dependence on Foucault’s medical gaze my perception of Emma’s mother was considerably occupied by the idea that excessive growth of fibroblasts in her skin was responsible for her nodules and scars [2]. Actually, my imagination of the microscopic structure in this woman’s tissue changed my relationship with her. Her appearance became less important and the scientific explanation rationalized my primary affective reaction. At the same time I felt that the relational distance to her increased because the symptoms of her disease came to the foreground. When Emma’s mother started to tell me her story, again I changed modes. Storytelling means sharing experiences and by this means I became a witness and was pulled into her world [3].
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Her diagnosis gained an individual face and an impression of how the disease had shaped her life and her narrative of it [4]. In addition to many encounters in adult medicine, meeting her with her baby allowed me not just to look back with her but also to understand what this meant for her new role of being a mother. The multitude of perceptual and relational approaches embedded in one single encounter makes our work often challenging but sometimes beautiful in itself, at least at a second glance which requires the opportunity for reflection [5]. Maybe this is an aesthetic quality sometimes neglected in our educational efforts to teach communication skills to medical students when we solely focus on the delivery of bad news or exploration of more or less existential problems. The beautiful moments need to be discovered, too. References [1] Parsons T, Shils E. Toward a general theory of action: theoretical foundations for the social sciences. New Jersey, USA: Transaction Publishers; 2001. [2] Foucault M. The birth of the clinic. An archaeology of medical perception. New York, USA: Vintage; 1994. [3] Hick C. The art of perception: from the life world to the medical gaze and back again. Med Health Care Philos 1999;2:129–40. [4] Kleinman A. The illness narratives. Suffering, healing and the human condition. New York, USA: Basic Books; 1988. [5] Bolton G. Reflective practice. Writing and professional development. London, UK: Sage Publications; 2010.