Regulation of "Psychosurgery"
Article for discussion:
Nuttin et al. 2014. Consensus on Guidelines for Stereotactic Neurosurgery for Psychiatric Disorders. J. Neurol Neurosurg Psychiatry DOI 10.1136/jnnp-2013-306580.
“Psychosurgery” involves brain surgery performed to address psychiatric problems. Today it is more commonly now called neurosurgery for psychiatric disorder. This is in part because of very negative perceptions of mid-20th century “psychosurgery,” when a crude form – the prefrontal lobotomy – was applied unethically to those who were not able to give consent and resulted in undesirable side effects. Since then surgical methods have greatly improved, and psychosurgery is used as a treatment of last resort in particular to help patients with OCD and MDD (major depressive disorder) who have very serious, chronic symptoms that do not respond to other treatments.
Deep brain stimulation (DBS) is one type of surgery involving the implantation of an electrode in the brain tissue. It is considered reversible, but carries the risks of brain surgery. It has been very successful in treating movement disorders (see, e.g., videos on Youtube). DBS is now being used for some psychiatric disorders such as MDD and OCD in some places. It is also being explored for a broader range of possible applications including disorders of consciousness, uncontrollable aggressive disorders, eating disorders, addiction etc. The first two – disorders of consciousness and aggressive disorders – are particularly interesting and challenging as the people concerned are generally incapable of giving their own consent to the treatment.
An example of the regulation of “psychosurgery”:
The Ontario Mental Health Act (MHA) defines and regulates “psychosurgery” in Ontario.
s.49(1) states psychosurgery may not be administered to an involuntary patient, someone incapable of giving consent on his or her own behalf, or to anyone detained under the Criminal Code (either unfit or not criminally responsible).
s.49(2) defines psychosurgery as any procedure that, by direct or indirect access to the brain, removes, destroys or interrupts the continuity of histologically normal brain tissue, or that inserts indwelling electrodes for pulsed electrical stimulation for the purpose of altering behaviour or treating psychiatric illness, but does not include neurological procedures used to diagnose or treat organic brain conditions, intractable physical pain or epilepsy, if these conditions are clearly demonstrable.
The law distinguishes between organic brain problems and functional/psychiatric disorders. Some things fall in the middle. This affects who has access to the treatment.
As with other medical interventions, what begins as experimental may then become a therapeutic intervention, and may ultimately become the standard of care.
A range of diverging views existed in the group on the following points:
1) Why have legislation that restricts “psychosurgery” but not other kinds of interventions in the brain?
· This imposes an artificial distinction between surgical and other medical interventions. Some drugs can create permanent changes.
· The special legislation for surgery seems to flow from the historical reaction to the lobotomy, as well as from the perceived greater invasiveness and irreversibility of brain surgery.
2) Why distinguish between organic brain disorders and psychiatric conditions in the regulation?
· The distinction between organic and psychiatric problems is unstable. As we learn more about the brain, it is likely that at least some of what are currently viewed as psychiatric will come to be understood also in terms of their organic basis (i.e., related to brain structure and function). As a result, more conditions will become “organic brain disorders.” For example: epilepsy was once seen as psychiatric but is now understood as an organic brain condition.
· The distinction between organic and psychiatric conditions is not based on a clear theory.
· Ultimately, why should the regulation of brain surgery that targets behavioural or mental problems be different depending upon the prevailing theory about the causes of those problems?
· This focus on “organic” draws seemingly arbitrary distinctions between people with similar symptoms having different causes (e.g. mental and behavioural problems due to obvious brain injury, toxins or infection, or unknown neurodevelopmental causes).
3) Is Ontario’s requirement of first-person (i.e., no surrogate) consent for psychosurgery appropriate today?
· The insistence on first-person consent by the patient is not unique in medical law. In Canada, the sterilization of individuals who cannot provide consent is allowed for therapeutic reasons, but not for contraceptive reasons. This flows from the shameful history of state-sanctioned eugenic sterilizations in Canada and elsewhere. This is a parallel with our current regulation of psychosurgery, which was also a reaction to what is now regarded as undisciplined and unethical behaviour in the past.
· YES – we should restrict access to those who can consent for themselves
· There is a real risk that other people’s norms and values about behaviour and mental states will be imposed on vulnerable people.
· It is true that surrogate consent is allowed for brain surgery to remove a tumour. This is intended to save a life, and is different from an intervention designed to modify behaviour.
· It is also true that surrogate consent is allowed for brain surgery to relieve conditions that are not immediately life-threatening like Parkinson’s disease or epilepsy. But this, too, is different from an intervention to target psychiatric symptoms for two reasons. First, these interventions are not experimental, and second, they are less likely to involve the imposition of contested norms about behaviour and mental states.
· The Consent and Capacity Board is not an effective way to protect patients from improper interventions. This is because surrogates (who are sometimes the caregivers of a person with challenging behaviour) and doctors are likely to be in agreement. The CCB procedures are invoked when there is a disagreement between surrogates and doctors.
· Historically, psychosurgery was pushed forward by desperate individuals and families. Control on the expansion of these treatments must come from legislation.
· NO – we should not restrict access to only those who can consent for themselves; we should permit surrogate consent
· The case example described in Nuttin et al. of a person with severe cognitive disability and severe auto-aggression (self-mutilation involving the removal of an eye) shows that some people are in great need of effective treatment to safeguard their health and safety. There are some signs that psychosurgical interventions for aggressive disorders of this type may be helpful.
· Restricting access to those who are capable of consenting provides “protection” that essentially involves a state declaration that capable people can have access to the treatment, but that a class of very vulnerable people cannot. It is discriminatory without good justification.
· Surrogate consent is permitted for incapable patients in high-stakes situations including removal of life support, brain surgery for a range of conditions (life-threatening like tumours and aneurysms, and non-life threatening like movement disorders and epilepsy). It is therefore incorrect to say that surrogate consent is permissible for brain surgery only where a condition is life-threatening. Even if this were correct, some psychiatric conditions are debilitating and life-threatening.
· In Ontario the Consent and Capacity Board is in place to ensure surrogate decision-makers act in the best interests of the patient.
· Why should the government remove the decision from the patient’s family by prohibiting surrogate consent. This simply substitutes the judgment of the government or society against psychosurgery for the judgment of the family, which is better placed to protect the patient.
4) Does the fact that DBS is considered reversible mean that it should be regulated differently from ablative psychosurgery?
· Perhaps reversible procedures like DBS should not be regulated as strictly as ablative psychosurgery, which is irreversible. If there are unwelcome side effects from DBS, these can be reversed.
· But, we need to ask what it means to be reversible.
o It is possible that DBS may have side effects on mood, thinking or behaviour. If it changes a person’s personality or emotions in a way that makes them unmotivated or unwilling to reverse the DBS, would the DBS still count as “reversible”?
o Is this a problem? Why shouldn’t the person after the DBS-induced personality changes be the appropriate person to decide if they like those changes? The DBS stimulator can be turned off so that the person can determine which state is preferred.
· Sometimes having an intervention and then removing it does not return you to baseline, but worse off. There may be a “rebound effect” in which case it would not be a reversible condition.
5) Other observations
· Some jurisdictions permit surrogate consent as long as an independent ethics or review board also approves. Of course any additional layers in the decision-making are also limited by their own structures, biases, etc.
· It is possible that no regulatory approach is perfect. Each one poses different types of risks and benefits for vulnerable patients. The question may be “what is the least imperfect option”?
· Our human rights normative framework is either so vague or the situation so complex that the same framework furnishes an argument for and against prohibiting psychosurgery for incapable patients.