I have investigated the changes that Obsessive-Compulsive Disorder patients experience during treatment with Deep Brain Stimulation.
Deep Brain Stimulation (DBS) is a relatively new, experimental treatment for patients suffering from treatment-refractory Obsessive Compulsive Disorder (OCD). DBS involves the implantation of electrodes in the brain, which give a continuous electrical pulse to modulate the activity in that brain area. At the Academic Medical Center of the University of Amsterdam, where this project took place, all psychiatric patients received DBS in the nucleus accumbens of both hemispheres. The effects of treatment are typically assessed with psychopathological scales that measure the amount of symptoms. However, clinical experience indicates that the effects of DBS are not limited to symptoms only: patients for instance report changes in perception, self-confidence, doing things unthinkingly, and in their social interactions. The aim of this project was to get a better overview of the whole variety of changes that OCD patients experience following DBS treatment.
For that purpose, I conducted semi-structured qualitative interviews with 18 OCD patients on their experiences. Such qualitative research into the experiences of patients and their relatives is important because it helps to gain insight in the overall effects of DBS, which in turn helps to improve current DBS treatment by better tailoring treatment to patients’ needs. Furthermore, a better overview of possible experiences is useful for prospective patients and their relatives to prepare for what might happen following DBS treatment.
Some results
We indeed found that our participants reported a variety of changes. We summarized these changes in four groups: with regard to (a) patients themselves, (b) their (social) world, (c) their way of interacting with others, and (d) their existential stance on themselves and on their new situation. We suggested that many of these changes can be seen as different expressions of the same process; namely that the experience of anxiety and tension gives way to an increased basic trust and increased reliance on one’s abilities. Participants for instance reported that they were less anxious, more hopeful, more direct, expressive and assertive, and that they trusted themselves and their abilities more. They were more engaged and interested in the word around them and had more time for social interactions. These interactions sometimes changed considerably too, especially for those participants who became more direct and assertive. At times, the changes following DBS treatment led to relational tensions.
Another remarkable change that participants reported was that they increasingly did things unthinkingly or automatically – instead of with the deliberate attention they would have paid their actions before. What used to be compulsive, closely monitored rituals now increasingly became unreflective habits. (For more on the role of deliberate attention in OCD, see the chapter ‘Being free by losing control’, De Haan et al (2015).) Furthermore, participants felt much more free as their lives were no longer exclusively dictated by their OCD. This shift from merely surviving to living a fulfilling life sometimes proved to be difficult too. Some grieved missed changes and how much damage the disease had done. And some participants had to find out what they wanted to do with their lives.
A more elaborate description of our participants’ experiences can be found in our open access paper De Haan et al. (2015).
Another, much debated, question concerns personality changes. Does DBS change patients’ personalities? The answer, perhaps unsurprisingly, depends on what you mean by ‘personality change’. People change, but presumably not all changes count as a change in personality. Plus people opt for DBS because they want to change – and since psychiatric disorders precisely pertain to the way in which you feel, think, and/or act, treatment should also affect these experiences that are so central to our personhood. I interviewed the same group of 18 OCD patients about whether they felt they had changed ‘as a person’ during DBS treatment. It turned out that participants understood different things by what ‘changing as a person’ means: it seemed that participants either understood it as having different convictions and a different outlook on life, or that they instead referred to how their way of acting and interacting had changed. This means that two people with similar experiences may give opposing answers to the question of personality change – depending on the implicit definition they adopt.
Most participants in our group felt they had become more themselves. That is, they felt that their treatment (which consisted of DBS combined with Cognitive Behavioural Therapy, or other types of psychotherapy) had relieved them to some extent from their symptoms, and that their present way of acting and interacting reflected who they are without OCD. One person felt less herself. Several participants also wondered how to determine whether changes fit you or not – especially if OCD had affected them from a very early age on, there is no clear ‘pre-disease-self’ to compare with. For more on participants’ experiences and the implications of these experiences for the neuro-ethical debate on personality changes following DBS, see our open access paper De Haan et al (2017).
Apart from the interviews, I used theories and insights from phenomenology, ecological psychology, and enactivism to develop an encompassing framework to capture the phenomenological changes that occur during DBS treatment (De Haan et al. (2013)).
In this project I collaborated with:
Prof. Dr. Damiaan Denys, Academic Medical Center, University of Amsterdam
Dr. Erik Rietveld, Academic Medical Center, Cognitive Science Center Amsterdam, University of Amsterdam, The Netherlands
Prof. Dr. Martin Stokhof, Institute for Logic, Language, and Computation, University of Amsterdam
