Surgical decision-making among patients with uncontrolled epilepsy: “Making important decisions about my brain, which I happen to love”

Abstract

Objective To explore decision-making from patients’ perceptions of risks and benefits of epilepsy surgery for refractory focal seizures. Methods Using constructivist grounded theory, in-person interviews were conducted with 35 adults with refractory focal epilepsy who were undergoing a pre-surgical evaluation or who had consented for surgery. Results For this sample of participants decision-making about surgery was complex, centering on the meaning of illness for the self and the impact of epilepsy and its treatment for significant others. Two interrelated categories crystalized from our data: the unique context of brain surgery and how the decisional counterweights of risks and benefits were considered. Discussion Exploring components of decision-making from the patients’ perspective afforded an opportunity to describe thought processes intrinsic to how people with drug-resistant epilepsy weighed their treatment options. Tensions were evident in how decisions were made. We use the analogy of an imaginary tightrope-walker to create a visual image of what patients face as they consider the illness experience (past and present), their hopes for the future, and the simultaneous uncertainty centered around balancing the counterweights of treatment risks and benefits.

Surgical Decision-Making for Temporal Lobe Epilepsy: Patient Experiences of the Informed Consent Process

“…Data for this manuscript originated from a parent qualitative study ( N = 35) where the contextual basis of decision-making centered on how treatment risks and benefits were described ( 3 ). In the present study, we focus on the subgroup of 19 participants who had signed an informed consent to undergo a craniotomy and surgical resection of epileptogenic tissue.…”

“…The advantages of epilepsy surgery for seizure control have been established by Class 1 evidence ( 1 , 2 ). However, electing to under go an irreversible brain procedure represents a complex decisional process for both people with epilepsy (PWE) and clinicians, that includes weighing surgical risks against expectations for seizure freedom and a hopeful future ( 3 ). Even in well-selected candidates, and despite illness severity, firmly held beliefs especially fear, influence whether patients will choose or defer surgery ( 4 , 5 ).…”

“…Conclusions from our larger study of patient perceptions of risks and benefits ( 3 ), were that an elective brain procedure for a chronic and frequently life-long condition, raised uniquely complex questions for PWE and their families when surgery was presented as an option. As part of the parent study, the purpose here was to explore how people with pharmaco-resistant TLE experienced the process of signing the informed consent for epilepsy surgery.…”