Deep brain stimulation (DBS) involves using a pacemaker-like device to deliver constant, carefully targeted electrical stimulation to areas within the brain. It was first approved in the late 1990s as a therapy for managing the symptoms of Parkinson’s disease. The initial success of DBS led clinicians and device manufacturers to explore other possible applications, and in 2003 it was approved as a therapy for managing dystonia, a neurological disorder characterised by painful and crippling body movements and postures. Other available interventions for dystonia are generally considered to be crude and ineffective. Medications can provide some relief, but for many sufferers they are inadequate or the side-effects are intolerable. Ablative therapy, which involves carefully destroying specific areas of the brain, can provide some therapeutic effect, but this is often short term and the therapy will need to be repeated. There is a great deal of hope among clinicians and sufferers, then, that DBS will prove to be a more effective and safer means of reducing dystonic movements. By 2010 over a thousand individuals, mostly adults, had received DBS for dystonia.
In 2011 I began an ethnographic study of a novel multidisciplinary clinical team in the UK providing DBS to children with dystonia. It is one of few teams worldwide providing DBS to children, and unlike adult DBS services, most of its patients have a complex movement disorder, where dystonia co-exists alongside other manifestations of neurological trauma such as spasticity. Indeed the team (which I refer to as the Paediatric Motor Disorder Service, or PMDS), is considered to be pioneering the delivery of DBS to children with complex movement disorders. For me as a sociologist, it has represented an excellent opportunity to witness the development of a new clinical therapy, and to explore how various social and institutional factors can shape the development of new clinical therapies.
It has also provided me with an opportunity to explore how young patients and their chronic illnesses are rendered intelligible within a clinical context based around a novel neurotechnology. Previous studies have illustrated that new medical technologies tend to reify biomedical-based understandings of health and illness, in which a patient’s experience of illness, and the social aspects of illness, are elided. As Andrew Webster has argued, new medical technologies have tended to facilitate the emergence of health identities based around biomedical criteria (Webster 2002). Neurotechnologies, particularly MRI and other neuro-imaging technologies, have been implicated in this, with some commentators suggesting that they are leading us to an era of neurocentrism in which the essential dimensions of the self are equated with neural circuits and neurochemistry (Vidal 2009). An aim of my project, then, is to determine whether this was the case with the PMDS. I’ve been exploring how children and their illnesses are ‘enacted’ (to borrow a term from Annemarie Mol, (2002)) in various interactions during their time with the PMDS. Here is a team that relies heavily on neuro-imaging technologies and puts electrodes into the brains of children; surely they are, in some way, involved in this ‘neurologisation’ of personhood.
During the very first team meeting that I observed it became apparent that this was not the case. A feature of the meeting initially struck me as peculiar (although I soon realised that this was characteristic of all PMDS team meetings). This is the way in which members of the team refer to, and speak about, their young patients. While there is some talk about MRI images, brains, the basal ganglia, electrodes and DBS stimulation parameters, much more time is devoted to talking about a child’s progress at school, their relationship with their siblings and parents, their mood, and their ability to access computers, iPads or assistive technologies. Such considerations seem to have a bearing on the decisions that are made during the team meeting; they are certainly not immaterial to clinical decision making. Indeed, the team subjects their patients to what could be called a ‘broad clinical gaze’; a clinical interest that extends from the shapes and structures of the brain, to the subjective thoughts and emotions of their patients, to the internal dynamics of family life. The patients who were being discussed in team meetings, then, were not the impersonal biomedical entities that have been the subject of so much critical attention from social scientists. Given the various professional backgrounds of those involved in the team (which include occupational therapy, physiotherapy, clinical psychology, speech and language therapy, and neurology), I should not have found this surprising: proponents of multidisciplinarity in healthcare have argued that it leads to a more ‘comprehensive’, ‘patient-centred’ approach.
I have witnessed various manifestations of this broad clinical gaze throughout my fieldwork. Due to the novelty of therapy they are offering, the PMDS team has had to devise new clinical routines for identifying appropriate candidates, for measuring the effectiveness of the therapy, and for managing the expectations of their patients and families. In doing this, the team has employed a wide range of tools and resource from a range of disciplines, particularly occupational therapy. Occupational therapy as a discipline has often been highly critical of the reductive biomedical model of illness, and many occupational therapy tools have been developed in order to support a more ‘social’ and ‘patient-centred’ approach to clinical practice. Several of these tools are routinely used by the PMDS. One is the Assessment of Motor and Process Skills, which the team uses to measure a patient’s disability. During the assessment, the patient must attempt to perform several ‘activities of daily living’ that they feel are important to them. These can include brushing teeth, preparing a bowl of cereal, or dressing oneself. The patient’s performance is video-recorded, and these video-recordings are used by the team’s occupational therapist to grade aspects of the patient’s body movement and body position as they perform each task. The assessment is carried out before and after the DBS system has been implanted, enabling any DBS-induced improvements to be clearly identified. In effect, various aspects of a patient’s domestic life are foregrounded during the assessment, and dystonia is rendered intelligible in terms of its impact on the patient’s ability to use their body as an efficient implement for undertaking culturally-mediated tasks.
A similar tool from occupational therapy is used as a means to manage the expectations of patients and families. Many patients and families who arrive at the PMDS have unrealistic hopes about what DBS can do for them – this is due, in part, to media-generated hype surrounding DBS. In an attempt to ensure that patients and families have realistic expectations before consenting to the procedure, members of the team hold a goal-setting session with each family. This session is based upon the Canadian Occupational Performance Measure, a standardised, ‘semi-structured’ interview in which patients and families are asked to identify the aspects of their day-to-day life that they would like to improve with DBS. The Canadian Occupational Performance Measure encourages patients and families to be explicit about their hopes, and importantly, it prompts team members to convey their predictions in reference to these hopes. In one session I witnessed, for example, a 16-year old patient stated that he hoped that DBS would provide him with sufficient mobility to use the public bus system. A team member replied that this is not a realistic goal for DBS – his inability to use public transport, she told him and his family, was due to muscle weakness around his pelvis and this would not be directly improved with DBS. In this way, by foregrounding specific aspects of the patient’s day-to-day life, family members and patients collectively construct an account of a ‘likely’ future. Patients are again rendered intelligible in terms of their ability to, and desire to, perform culturally-mediated tasks.
The ‘broad clinical gaze’ of the team is a consequence of its multidisciplinary composition, and it is a consequence of the various tools that have been adopted into their routine clinical practices. There is then, an obvious link here between the structure of the clinical team, the type of clinical work they do, and the way in which the patient and illness are enacted during clinical interactions. But this link can be traced further: the team itself is the product of a particular healthcare policy initiative in the United Kingdom. This policy initiative promotes multidisciplinary service provision within the paediatric contexts, as multidisciplinary teams, it is argued, are better suited to assessing the complex needs of a child and will thus ensure better health outcomes (Kennedy 2001; 2010). The policy initiative has had two important consequences. First, it has created a health service funding scheme that makes it financially viable for hospitals to house teams such as the PMDS. The agencies that administer hospitals receive more money from the Department of Health for a service provided to a child than if the same service was provided to an adult. This is on the assumption that a child will need to see a wider range of professionals, and it enables the PMDS team to generate enough revenue so that it is self-sufficient. Second, the policy initiative has influenced the design of clinical spaces, including the newly-built children’s hospital that houses the PMDS. The hospital was specifically designed to encourage multidisciplinary teamwork, and it was specifically designed to support families and encourage patient-centred care. The hospital contains an open-plan office in which clinical teams are expected sit together as a group, and wards have been designed so that a range of health services can be brought to the bedside of the child – rather than the child having to be wheeled to different parts of the hospital. Importantly for the PMDS team, the hospital contains a diversity of spaces that permit a range of activities. Each ward contains a kitchen area for families to prepare food, and a play area with toys, small tables and chairs, and drawing utensils. I watched the occupational therapists convert these into clinical spaces for assessing the child’s ability to perform various domestic chores. The Assessment of Motor and Process Skills, for example, is often carried out in these kitchen areas. The hospital also contains a gymnasium. In here, I watched the physiotherapist carefully construct a space for conducting a gross-motor function examination: A child was encouraged to run, jump, crawl and balance on one foot. The architecture of the hospital, then, permits particular forms of multidisciplinary clinical work. It contains a variety of spaces which enable a variety of profession-specific interactions to be undertaken, all within the one building. In effect, ‘multidisciplinarity’ has been encoded within the material form of the hospital.
Peter Keating and Alberto Cambrosio (2003) argue that during the 20th century there was a great transformation from medicine to biomedicine. In the latter, health and illness are rendered intelligible in terms an array of biological entities such as cellular markers and genes. Keating and Cambrosio describe the transformation as an emergence of biomedical platforms: configurations of healthcare policy, architecture, machines, infrastructure, reagents and ‘ways of thinking’ that reify and perpetuate this biomedical mode of clinical practice. These platforms, they argue, have a structuring effect on clinical research and clinical work. During my fieldwork with the Paediatric Motor Disorder Service I have witnessed the emergence of a different kind of platform; one that exists in addition to those identified by Keating and Cambrosio. This platform is characterised by a configuration of hospital architecture, healthcare policy, assessment tools, a clinical team structure and ‘ways of thinking’ that reify and perpetuate a broad clinical gaze. This gaze has the effect of foregrounding particular social aspects of an illness and aspects of a patient’s experience of illness during clinical interactions – it is according to these aspects that dystonia, for example, is rendered intelligible within the PMDS, and it is according to these aspects that the effectiveness of deep brain stimulation is measured and assessed. Whether or not such platforms exist in other countries or in non-paediatric contexts is matter for further research. But in the setting where I have been doing my fieldwork, this platform has shaped the way in which a new neurotechnology has been integrated into clinical service, and it is structuring the type of patients, bodies and illnesses that are being enacted by within this service. Such platforms may hinder the march towards neurocentrism and the ‘neurologisation’ of personhood that has been envisaged by some commentators. Within the PMDS deep brain stimulation is understood as a tool for ‘unlocking’ the body and enabling patients to engage in the world. Here, then, the neural structures of the brain are implicated in identity and personhood, but only in so far as that they limit an individual’s ability to immerse themselves in culturally-mediated activities. Indeed, it is this immersion that is seen as the ultimate source of ‘the self’.
John Gardner is a PhD candidate at the Centre for Biomedicine and Society at Brunel University, London. His research interests are the dynamics of innovation and social change and the relationship between technology, the body and sociality. In 2010 he was awarded a Wellcome Trust PhD studentship as part of a Wellcome Trust Biomedical Strategic Award (grant number: 086034). John also has an interest in biomedical ethics and is a member of the London and Brighton Translational Ethics Centre (LABTEC).
Keating, P. and Cambrosio, A. (2003). Biomedical Platforms: Realigning the Normal and the Pathological in Late-twentieth-Century Medicine. Cambridge MA: MIT Press.
Kennedy, I (2001). Kennedy, I (2001) Learning from Bristol: The Report of the Public Inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984–1995. London: The Stationery Office.
Kennedy, I (2010). Getting it Right for Children and Young People: Overcoming Cultural Barriers in the NHS so as to Meet Their Needs. London: Department of Health.
Mol, A. (2002). The Body Multiple: Ontology in Medical Practice. Duke University Press.
Vidal, F. (2009) Brainhood, anthropological figure of modernity. History of the Human Sciences, 22: (1): 5–36.
Webster, A. (2002). Innovative health technologies and the social: Redefining health, medicine and the body. Current Sociology 50(3): 443-457.
Image: © Rachael Allen – www.rachaelallen.com
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