Observing How Patients Think About and Decide on Epilepsy Treatment

MCL Profile

By Toby Haeusermann

Epilepsy is a condition that has had an outsized role in social life. In some societies, individuals with epilepsy are ostracized. In others they are revered as spiritually enlightened. In the United States, epilepsy affects approximately 3 million adults, 1/3 of whom cannot adequately manage symptoms with standard medication treatments. 

In the last 9 years, responsive neurostimulation (RNS) has been used in clinical practice for these hard-to-manage cases. This involves implanting a device in the brain to interrupt seizures, somewhat similar to how a pacemaker works for heart attacks. Besides epilepsy, the technique has been proposed for a number of neurological conditions for which current treatments are often unsatisfactory, including refractory depression, anxiety, chronic pain, Alzheimer’s disease and ischemic stroke. Such interventions hold promise for treating debilitating conditions, but the devices’ ability to modulate brain activity without direct human supervision also raises concerns about patient safety, bioethics, and the autonomy of individuals. Tobias Haeusermann, PhD, and colleagues set out to investigate these topics, focusing in particular on how patients think about these issues and decide about treatment. To do this work, they have drawn on multiple disciplines, such as philosophy, neurology, and sociology, and have used primarily qualitative methods, such as field observations and interviews.

Over the past four years, Haeusermann has been studying the experiences of 13 patients. “Clinicians are very protective of their patients, especially during the eventful and taxing months right before and after surgery. And rightfully so, we also want to make sure not to burden them,” said Haeusermann. As a first step, he observes the clinical encounters. He watches the patient and provider’s decision-making process about whether to proceed with the RNS implantation. “I’m like a fly on the wall, observing the interactions,” said Haeusermann. These patient-provider discussions happen several months before the implant surgery. For some patients it takes 20 years from their first diagnosis to reach the point of making this decision.

The second encounter Haeusermann has with the patient happens several months post-surgery. This gives the patient a chance to heal. The RNS device first needs to record the seizures so it can be taught how to prevent them. Once the clinicians and the device have learned enough, the stimulation part is switched on in the clinic. Haeusermann has been with patients when it is activated. “It was a really emotional moment to be with a patient when it’s switched on. It’s a new treatment and this is the first time (the patient) is seeing their seizures on a screen and how they might be stopped,” Haeusermann said.

Patients are more relaxed at the second encounter. The in-person interview happens in the patient’s home, or another non-clinical setting. “It’s illuminating to be in the patient’s environment,” says Haeusermann. “In the hospital setting sometimes, patients feel pressure to answer in a certain way. In their own homes, they are more relaxed and can express what is really important to them.”

In these interviews, he and the patient and caregiver discuss the observations Haeusermann made in the clinical setting. They focus in particular on moments such as when the patient was making decisions with their provider and about post-surgery treatment. Haeusermann focuses on how patients felt as they made decisions and what changed after surgery. He also asks questions about what they now feel they would have liked to discuss during that decision process. Haeusermann has been able to use those answers to help clinicians better understand patients’ concerns. For the future, clinicians can integrate these insights into decision-making with new patients and into the follow-up care they provide.

Another overarching topic Haeusermann and colleagues have focused on throughout this work is whether a person may feel that having a device implanted in their brain changes their sense of self or their personality. Counter to their expectations, they found that before surgery, “Patients didn’t think about this in their decisions.” During post-surgery interviews, the team asked patients and their caregivers to share how they felt about such issues. Instead, respondents talked about how the data the device produces affects how patients understand their illness and recovery. “In the future, clinicians will hopefully be able to use these insights when helping patients through the decision-making process,” says Haeusermann.

Haeusermann and the team working on this are currently planning interviews with clinicians, patients, and caregivers from other epilepsy centers in the country. He hopes this will further the relationship between clinicians and patients.

Haeusermann sees compelling parallels between the medical decision-making he investigates and the collaborative research of which he is part: "One thing that is often forgotten is that people need to trust each other to make decisions,” says Haeusermann. "The same is true for this type of research, and it wouldn't be possible without the invaluable support and guidance of my Decision Lab and MCL team members.”