Part of my current placement involves working with children experiencing dystonia who are candidates for or who have had deep brain stimulation (DBS). Since I was relatively naive to the concepts, I have read up. DBS seems to be helpful to clients experiencing a range of motor-related physical problems, and is most commonly used with people experiencing Parkinson’s Disease, and more recently people experiencing various forms of dystonia. There are two main subtypes of dystonia: primary (a discrete condition) and secondary (resulting from other conditions such as brain injury). DBS seems to be more effective for people diagnosed with primary dystonia. This might be related to the heterogeneity of the secondary dystonia group. A paper by John Gardner about the history of DBS was helpful in positioning the treatment in a historical and sociocultural context, but some of the assertions in the paper concerned me.
One section that really jarred was the part about why neurosurgeons were receptive to employing neurostimulatory technology at the time that it was reintroduced:
Philip Gildenberg, a stereotactic neurosurgeon at the time [said] the introduction of levodopa for the treatment of Parkinson’s Disease in 1967 had left a void for functional neurosurgeons … Neurostimulation provided an opportunity, for some neurosurgeons at least, to utilise their skills and equipment and provide potentially effective surgical treatments for other conditions.
In other words, they wanted people to practice their (expensively acquired both in terms of time and money) skills upon, and to do so they needed to find new client groups. This seems a similar justification to maintaining a state of war because one has armed forces and a military-industrial complex to support. Perhaps there is a parallel medical-industrial complex, which has some reliance on identification of targets against which battles can be waged in order to self-perpetuate. Indeed, the battle against heart disease using pacemakers was initially proving to be a lucrative one, and the technology could be transferred to the treatment of neurological conditions. Another interesting point was the assertion by Blume that pacemakers gave ‘the notion of an implantable device legitimacy and appeal’: perhaps they helped people to accept the possibility of becoming medical cyborgs.
Implantation of electronic devices to help people to overcome physical conditions seems to make sense, and qualitative explorations of the impact of DBS for people with primary dystonia suggest its effects can be life-transforming. I was somewhat concerned to learn of possible mission creep for DBS. It is also being piloted for use with people experiencing emotional distress. People diagnosed with depression and people diagnosed with OCD have been part of pilot trials to see whether DBS can help them. Some of the language seems profoundly detached from the human experience of depression:
DBS to different sites allows interfering with dysfunctional network function implicated in major depression. (Link).
In relation to OCD:
OCD is essentially the result of faulty wiring in the brain. (Link)
Perhaps tellingly, OCD-UK states:
OCD-UK do not recommend DBS as a treatment for OCD and remain concerned that the dangers associated with the procedure continue to be overlooked by the medical community when much safer and less invasive treatments remain available.
Whilst DBS for distress might seem to be helpful for some people, the meaning that people might ascribe to it could be problematic. It seems to locate the problems they are experiencing very much within them, and perhaps that their difficulties are a result of faulty wiring, rather than being related to ways that they are trying to navigate difficulties that they are experiencing or have experienced in the past. It takes control away from the person, and might mean that changes that they experience in mood seem artificial, or divorced from their own reality: if they feel better when their stimulator battery is topped up, or the settings are modified, then is that something they can feel ownership of? Do they decide their settings, or does a professional set them, potentially implying expert-knowledge of what might be the best emotional state for them? This is somewhat reminiscent of Peter Breggin’s critique of frontal lobotomy in 1972, in which he suggested that it might be used to ‘subject the individual to the control of others’.
Who decides what the correct state of mind someone should experience is? What if people felt better when nothing had apparently been changed in relation to the DBS implants: is it a result of their efforts, related to the DBS, or to something else? Could people hack their own implants to gain control? Given control over one’s own implants and perhaps by extension, emotions, might it become possible to become somewhat lost, chasing some idealised emotional state, unsure if what one was feeling in the present was genuine? There is an overlap here with possible interpretations people might make with medications. However, people have more control over their medications: they can often choose to stop taking them, and if they do, there is no hardware to surgically remove.
If DBS for distress is found to be effective, who will make the decisions about who receives the surgery? Will people experiencing the conditions decide? Will the state decide? Are we at risk of retreading the path forged by Walter Freeman II, inventor and prolific practitioner of the “ice pick” lobotomy, who seemed to genuinely believe that his intervention was a panacea for mental health issues? Are there parallels with the continued administration of electroconvulsive therapy, whose evidence is tenuous at best? Does it link back to a primal urge to physically destroy the source of our suffering, as suggested by prehistoric remains found with injuries indicative of trepannings?
On which evidence shall our decisions be based? In whose interests was that evidence collected and presented?
Photo – “Operation Brain Surgery” by Charlie Tyack