26.1 Introduction

The brain is the neuroanatomical substrate that determines our unique selves. Surgery on this remarkable structure always has the potential to alter neurobehavioral function. Functional neurosurgery most often involves the treatment of movement disorders or epilepsy. Such patients have a variety of neurobehavioral symptoms and/or potential side effects that must be considered in the ethical analyses of risks and benefits of proceeding with surgery. There are, for example, risks of dementia and/or altered memory function. Functional procedures that target neurobehavioral symptoms present additional ethical considerations. The goals of this chapter are to outline the relevant ethical issues in functional neurosurgery for the treatment of neurobehavioral disorders.

This chapter will especially address the ethical issues surrounding the treatment of neurobehavioral disorders. Such disorders include those that directly alter cognition, mood, personality, or engender repetitive complex behavioral symptoms such as self-injurious behavior. Ethical safeguards are particularly important in this population because of the nature and severity of symptoms that may confer additional vulnerabilities. And, of course, psychosurgery has a history of abuse in the past century.

26.2 Due Diligence with Respect to Science

Good ethics depend on good science. All neurosurgical interventions that treat neurobehavioral disorders must be based on robust science. Such prior investigation involves the development of animal models, use of functional neuroimaging studies, and human pilot study data with reliable and valid measures. ¹ Despite the long history of prior neurosurgical interventions to treat severe neurobehavioral disorders, ² there is a paucity of data from randomized, controlled clinical trials. Such data is needed.

Furthermore, it is morally imperative to incorporate good clinical research methodologies in future applications of novel or innovative neurosurgical interventions for the treatment of neurobehavioral disorders. At a minimum, the methodology should include the use of valid and accepted measures to assess changes over time, a clearly defined protocol, and specific safety measures. ^{1 , 3 , 4} All investigational trials for the neurosurgical treatment of neurobehavioral disorders require the involvement of an independent Ethics Committee and/or Institutional Review Board (IRB) to provide ethical and regulatory oversight to safeguard patients. ¹ Current recommended guidelines also advocate for the adoption of independent, randomized and blinded controlled trials with minimized conflicts of interest or bias. ^{1 , 5} Results from these trials should be shared with the wider scientific community, preferably in a shared registry. Finally, if there is the intention to publish the outcomes of an innovative trial or even a single case study, this constitutes IRB defined research and appropriate research guidelines should be followed. Such processes maintain transparency and provide the best protection to patients, the neurosurgical team, science, the field, and the public.

26.3 Risk/Benefit Analyses

There are few guidelines to identify patients who will benefit from a surgery for a specific neurobehavioral disorder or to identify those who are at higher risk for injury. Given this uncertainty, neurosurgical teams must proceed cautiously and rely on their knowledge of the underlying functional neuroanatomy of the disorder and surgical target(s) to identify potential neurobehavioral outcomes (both positive and negative) including changes in mood, motivation, cognition, and behavior. Assessment of risk also includes those known surgical risks as bleeding, infection, or implanted equipment failure. Given the uncertainty associated with many neurosurgical procedures for severe neurobehavioral disorders, the level of patient suffering must be high to ethically justify the surgery.

26.4 Inclusion/Exclusion Analyses

Neurobehavioral disorders are among the leading causes of disability. They entail considerable suffering for the patients and their family members. ⁶ Despite well-established evidence based treatments, a significant number of patients continue to suffer and do not respond to these established therapies in a sustained manner or suffer unacceptable side effects. Neurosurgery for neurobehavioral disorders should be reserved for these patients. ^{1 , 7}

The current consensus is that neurosurgery to treat neurobehavioral disorders should be limited to the treatment of adults. ⁷ It is possible, however, to make an ethical argument to intervene in late adolescence for specific patients to maximize the opportunity for them to form appropriate peer relationships, complete their education, and be maximally successful in their transition to adulthood.

Neurobehavioral disorders are among the most complex disorders we treat and include mood, personality, motivational, cognitive, motor, sensory, and physiological symptoms. ⁸ Consequently, an interdisciplinary expert neurosurgical team is essential. Such a team includes trained functional neurosurgeons, psychiatrists, neurologists, and neuropsychologists with the relevant expertise in the target disorder/procedure. Partnership with a dedicated bioethicist and ties to other mental health and rehabilitation specialists is also advisable. ^{1 , 7} Best clinical practice dictates that surgical candidacy is determined by a consensus decision involving all relevant specialists. ² This “consensus conference” provides a forum for varied perspectives to be incorporated into the decision to offer a patient surgery and to proactively identify concerns so as to maximize benefit and minimize harm. ⁹

There are a limited number of centers with the requisite expertise in neurosurgical treatment of neurobehavioral disorders. Patients may need to travel long distances for surgery and follow-up visits. There has been some discussion in the deep brain stimulation (DBS) literature on the importance of family support when determining candidacy for surgery. There is a real need for support in post-operative care and transportation to follow-up appointments. ^{9 , 10} This practical consideration may lead to concerns about justice in patient selection. To exclude patients without social support or easy access to DBS centers would “create additional disparities in the level of care of these patients, further disadvantaging them.” ¹⁰ It may be the case that ablative procedures might be associated with greater risk, but still provide substantial benefit. Ablation may then be ethically justifiable when it is too burdensome for the patient to return for regular programming sessions when neuromodulatory procedures are performed. ⁹

Related posts:

1 History of Innovation in Stereotaxy/Functional Neurosurgery 9 Cortical and Subcortical Mapping 21 Epilepsy: Temporal Lobectomy with Invasive Monitoring 29 Neurosurgery Treatment for Anorexia Nervosa 36 Ablative Procedures for Trigeminal Neuralgia 39 Neuroprosthetics

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