Download A Sociology of Medical Innovation: Deep brain stimulation and the

A Sociology of Medical Innovation:
Deep brain stimulation and the treatment of children with dystonia
Abstract
This doctoral research
project explores the day-today challenges faced by a
specialist medical team
using deep brain
stimulation (DBS) to treat
children with severe
dystonia.
The application of DBS
poses significant
challenges to clinicians,
patients and policy makers.
While in most cases DBS is
effective, clinical outcomes
can vary significantly
between patients. The rate
of adverse reactions is
unknown, and in some
patients DBS has induced
significant changes in mood
and personality.
This project uses qualitative
methods to explore how
such issues are dealt-with
in-practice by health
professionals. Fieldwork will
commence in February
2012: medical team
members will be
interviewed, and
observations will be
undertaken of team
meetings and consultations
with patients.
Objective
The research site
To explore the day-to-day social, ethical, and clinical challenges
encountered by a specialist interdisciplinary medical team using
deep brain stimulation to manage dystonia in children.
The research site is a paediatric ward in a large hospital within the
UK. Here, an interdisciplinary medical team treats children with
severe neuromuscular conditions such as dystonia. DBS is one of
the treatments they offer. The youngest patient this team has
treated with DBS was four years old.
Background
What is deep brain stimulation (DBS)?
DBS involves using constant electrical stimulation to reduce the
effects of pathological neural activity. DBS is currently being used
to treat Parkinson’s disease, essential tremor, dystonia, obsessive
compulsive disorder and major depression.
Surgically implanted electrodes deliver electrical stimulation to a
specific region of the brain. These electrodes are connected to a
pulse generator (very similar to a cardiac pacemaker), implanted in
the upper chest.
It is not known exactly how DBS works, but it is thought that
constant electrical stimulation can mask the pathological neural
activity that causes various neuromuscular and neuropsychiatric
disorders.
What is dystonia?
Dystonia is a neuromuscular condition. Pathological neural activity
causes muscles to contract violently or become rigid and stiff.
Generalised dystonia usually begins in childhood, beginning in the
lower limbs before spreading to other parts of the body.
Large muscle groups are affected, often those in the legs and
back. This can be painful and crippling for patients.
While medications can provide relief for many patients, some
require surgical intervention. Recently deep brain stimulation is
being offered to those with dystonia in a few specialist centres in
North America, Europe and the UK.
An in-depth qualitative study of a specific medical offering DBS
therapy to children will be undertaken. This approach will enable an
exploration of the complexity of the team’s day-to-day activities,
and how team members make sense of their work.
Specifically, the following methods will be used:
Centre for Biomedicine
and Society
Other health professionals work extensively with this team and will
also be included in this project. These include neurosurgeons,
radiographers and administrative staff.
DBS provides an opportunity to explore how technologies are both
shaped by, and influence, the social world.
Methodology
CBAS
• Two neurologists
• A psychologist
• A specialist nurse
• A physiotherapist
• An occupational therapist
• A speech and language therapist
Why is DBS sociologically interesting?
Contact
John Gardner, PhD Candidate
Department of Sociology
Brunel University London
[email protected]
The team is made up of health professionals from a range of
backgrounds. It consists of:
1. Semi-structured interviews with members of the medical team
and associated health professionals. These will be used to
draw out their own perspectives on using DBS to treat children.
2. Observations of routine meetings of the medical team.
Observations will provide a means to explore how
interdisciplinary collaboration and decision-making take place.
3. Observations of routine consultations involving health
professionals, young patients, and patients’ caregivers. These
observations will provide a means of witnessing the day-to-day
‘messiness’ of working with DBS therapy and with young
patients and their caregivers.
New technologies and therapies such as DBS can influence how
individuals perceive their body and their sense of self, and can alter
how they express agency.
For example, some commentators have argued that patients
undergoing DBS experience changes in mood and personality.
This raises some interesting questions:
• How do clinicians detect and define a “change in personality”?
• How do clinicians manage patients whose personality has
changed?
• How do you determine whether a child’s personality has
changed?
DBS, like many new medical therapies, has also become subject to
media hype and speculation. Patients can also have unrealistic
expectations of the therapy, and this can hinder the obtaining of
informed consent. This also raises some interesting questions for
the sociologist:
• How are the expectations of patients managed in-practice?
• How do clinicians obtain informed consent from young patients
and their parents when there is a great deal of uncertainly
surrounding the therapy?
• How do clinicians communicate this uncertainty to patients
New technologies also prompt the formation of novel social groups.
Ethicists, for instance, have argued that DBS patients should be
assessed and managed by specialist interdisciplinary medical
teams. Again, this raises some interesting questions:
• How do individuals from different disciplinary backgrounds work
together?
• How are courses of action decided upon within an
interdisciplinary setting?
• How does this interdisciplinary approach affect the experience of
patients?
• How well-suited are current policy and NHS structures to catering
for such interdisciplinary teams?
These are some of the questions that are addressed in this project.
By addressing these issues, this project will shed light on the
relationship between technological innovation and wider social
change.
Key references
Bell, E., Mathieu, G., & Racine, E. (2009). Preparing the ethical future of deep brain
stimulation. [doi: 10.1016/j.surneu.2009.03.029]. Surgical Neurology, 72(6), 577-586.
Gilbert, & Ovadia, D. (2011). Deep brain stimulation in the media: over-optimistic
portrayals call for a new strategy involving journalists and scientists in ethical debates.
[Perspective]. Frontiers in Integrative Neuroscience, 5.
Gisquet, E. (2008). Cerebral implants and Parkinson's disease: A unique form of
biographical disruption? [doi: 10.1016/j.socscimed.2008.09.026]. Social Science &
Medicine, 67(11), 1847-1851.
Glannon, W. (2009). Stimulating brains, altering minds. Journal of Medical Ethics, 35(5),
289-292.
Mol, A. (2002). The body multiple: ontology in medical practice: Duke University Press.
Morrison, D. R., & Bliton, M. J. (2011). Exploring Layers of Meaning with Deep Brain
Stimulation Patients. [doi: 10.1080/21507740.2010.539995]. AJOB Neuroscience, 2(1),
26-28.
Rabinow, P. (2008). Artificiality and Enlightenment: From Sociobiology to Biosociality
Anthropologies of Modernity (pp. 179-193): Blackwell Publishing Ltd.