ELSA Project PNS: Psychiatric Neurosurgery ─ Ethical, Legal and Societal Issues

Sabine Müller (Germany):

The ethics project has critically analyzed the broad ethical debate about DBS as a threat to personal identity, and investigated the understanding of autonomy in the light of neuropsychiatry and neurotechnology. We have argued that the ethically decisive question is not whether psychiatric neurosurgery can change the personality or not, but whether it does so in a good or bad way, i.e., first whether the result of change is good or bad; second whether the way of change is good or bad. Consequently, personality changes through interventions in the brain can be considered as ethically problematic if they (i) occur against the patient’s will, (ii) harm either the patient or third persons, (iii) reduce the patient’s capacity for autonomy, or (iv) diminish valuable abilities. Whereas negative personality changes should be avoided, positive personality changes should be accepted or even encouraged, regardless of whether they are of natural or surgical origin.

Furthermore, we have analyzed and compared the scientific evidence for the efficacy and safety of different approaches of PNS for different mental disorders, and evaluated their advantages and disadvantages for patients. We found preliminary evidence for efficacy and an acceptable risk-benefit profile for DBS and for micro- or radiosurgical anterior capsulotomy for intractable obsessive-compulsive disorder. We recommend to consider these methods for individual treatment attempts. However, multi-centre randomized controlled trials are necessary to provide reliable evidence. We also evaluated emerging techniques aiming at controlling brain functions situation-specifically, e.g., optogenetics and closed-loop DBS. One focus was on possible applications of PNS in forensic contexts, e.g., for treating pedophilic child offenders or psychopaths, another focus was psychosocial consequences of pediatric epilepsy surgery.

Tade Matthias Spranger (Germany):

The legal project has considered those elements of International Law, which might provide any important information regarding the legal assessment of psychiatric neurosurgery, as well as basic human rights documents (e.g., the UN Convention on the Rights of People with Disabilities, the Council of Europe’s Convention on Human Rights and Biomedicine, and the Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Biomedical Research). Furthermore, the German law was examined with regard to psychiatric neurosurgery. One focus was the analysis of Ulysses contracts for psychiatric neurosurgery, another focus were issues of informed consent and free will. It was shown that so-called Ulysses testaments, which allow physicians to switch off the stimulation against the will of a legally competent patient, are no valid legal instruments.

Judy Illes (Canada):

Little is known about current public opinions, expectations, hopes, and concerns over modern psychiatric neurosurgery, particularly given the controversial history of psychosurgery. To fill this knowledge gap, the social science project investigated with support of the ethics team cross-national themes, trends and values surrounding the use of different psychiatric neurosurgery procedures. For that, they investigated how print media in Canada, USA, Germany, and Spain reported about PNS in the years 1960 to 2015. The most discussed topics and the tone of the articles were analyzed, and differences between the four countries were described. One main result was that the tone of coverage became more positive for Canada, USA and Spain over time; whereas it remained cautious in Germany. In the next step, comments made by readers in response to news articles about PNS posted between 2006 and 2017 were analyzed. For further investigating current public opinions, expectations, hopes, and concerns over PNS, a focus group study was conducted that included 8 focus groups in Vancouver, Montreal, Berlin, and Madrid. The organization of the focus groups in Madrid was supported by Roberto Martínez-Álvarez. Findings indicate that participants across all cities hold concerns about the potential impact on the authentic self of patients who undergo PNS. Furthermore, participants made many references to historical psychosurgery and mostly negative and pessimistic comments about ablative neurosurgical interventions, whereas comments to deep brain stimulation were more positive.

Roberto Martínez-Álvarez (Spain):

In the last ten years, the team of Roberto Martínez-Álvarez has operated on 120 psychiatric patients with ablative neurosurgery or with Gamma Knife radiosurgery. In this group, 68 patients had OCD, 45 patients had been treated for aggressiveness related to autism or schizophrenia oligofrenia, and seven patients for major depression. All patients have been followed up properly; the current median follow-up is 6 years. This is the largest series published in the last 20 years. The study investigated: 1) the quality of life of the patients (who had been operated and followed up for at least five years); 2) their cognitive functions pre- and postoperatively; 3) to what extent the patients and their families consider that their pre-operative expectations have been met.

Chris Bervoets (Belgium):

The psychiatric team investigated the decision-making process of patients and the experiences of patients and their primary care-givers and family members with PNS. They conducted and analyzed a total of 29 interviews with 16 OCD patients who had undergone either DBS or anterior capsulotomy, and 13 caregivers of the patients. The following themes were revealed to be important during the decision-making process of the patients: desperation, social support or pressure, expectations and fear of surgery, and financial considerations. Choosing between anterior capsulotomy and DBS was mainly determined by considering reversibility (in case of DBS) and a “quick-fix” (in case of anterior capsulotomy).