Wednesday, September 14, 2016

“It’s like it’s not her anymore.”

By Sunidhi Ramesh

This post was written as part of a class assignment from students who took a neuroethics course with Dr. Rommelfanger in Paris of Summer 2016.

Sunidhi Ramesh, an Atlanta native, is entering her third year at Emory University where she is double majoring in Sociology and Neuroscience and Behavioral Biology. She plans to pursue a career in medicine and holds a deep interest in sparking conversation and change around her, particularly in regards to pressing social matters and how education in America is both viewed and handled. In her spare time, Sunidhi is a writer, bridge player, dancer, and violinist.

Picture this. A patient struggling with depression for almost twenty years undergoes her last resort treatment: deep brain stimulation (DBS). It is radical, invasive— somewhat new of a procedure to the point where only a few surgeons are skilled enough to perform it. But she decides to go through with it. And when it’s over, she can smile again, find motivation again. She feels brand new.

But her family isn’t so optimistic. This isn’t the woman they waved goodbye to before the surgery. This woman is different. It’s like it’s not her anymore.

So what do the surgeons do? Remove the implant and bring back the pre-surgery depression? Well, that’s not exactly what our patient wants. Keep the implant and leave her as-is? Well, her family wouldn’t be too happy with that.

What was actually done during the DBS procedure? Did we restore our patient’s original functioning and simply bring to light her true self? Or did we mask her true self with an alternate personality? What is the true self, anyways? Does it exist? And if it does, where can we find it?

This is the nature of the “true self” debate.

In a time when procedures such as DBS exist as viable treatments for mental illness, the nature of personal identity and its continuity are topics that must be questioned and debated. Thus, these issues were the topic of conversation at the Pitié-Salpêtrière Hospital during the Neuroethics Network Conference in Paris, France. (The ideas and questions that I consider throughout this piece were sparked by the presentation, panel, and discussion from this conference.)

The idea of identity permeates every form of the human experience. In the criminal justice system, we rely on the fact that each person holds only “one identity” and that that identity is responsible for its own actions. In the educational system, we invest in cultivating, developing, and praising “one identity”; in our social circles, we expect to interact with the single identities of the people we know and love.

And, most importantly, our individual morals, rights, and thoughts revolve around our perceptions of our own identities.

But we also hold a double standard. We would all like to think that our identities are complex.

Image courtesy of Pixabay
I’m a different person when I’m hungry. That time I snapped at my brother? I was having a rough day. I wasn’t being myself. That day I got rejected from ten universities? The girl that existed that week wasn’t really me.

We make excuses for our identities by breaking it into distinct pieces. It’s only human. But how does this play into the idea of a “true self”? Is it all these identities averaged together into one? Is it one piece more than another? What is it?

Furthermore, in a medical sense, do we want to engage in procedures or interventions that pose as a threat to a patient’s personal identity? That contain the risk or side effect of this patient waking up as “another person” or, effectively, a “healthy stranger”?

All of these arguments are salient and important. But let’s return to the original case. We have a patient who is satisfied with her procedure accompanied by a family who feels as if they no longer recognize her.

In The Illness Narratives: Suffering, Healing, and the Human Condition [1], author Arthur Kleinman begins to describe the phenomenon of illness. He argues that the way a person experiences and understands illness is different from how it is perceived by the people around her. To do so, he illustrates the example of a father who is plagued by pain all over his body. The doctors are unable to find a cause for it, and he has no physical symptoms. His motivation, drive, emotionality, and interests begin to change as a result of his illness; but his family refuses to believe that his suffering is real, and the man endures a form of emotional pain and abuse from his family because of it.

In this real-life scenario, the family is in a position of power. They have the right to determine whether or not the father is a changed man, whether or not he is in pain, and whether or not his illness is real. The father has no say in the matter. He is simply a patient at the will of the people around him.

Shift back to our DBS patient. Does her family have a right to ask for the treatment to be reversed on the basis of her becoming a “different person”? Considering that she has been struggling with this illness for almost two decades, can we trust that the family remembers what she was like before depression? In that case, perhaps she is not becoming a different person after all. Perhaps she is simply becoming the person she was before the illness overcame her. Or perhaps she’s just getting to become the person she has never been able to be; perhaps she has been depressed her entire life.

When we start questioning the nature of identity and individuality, we should also consider beginning to place more control in the patient’s hands. What keeps DBS implants from being manually controlled by the patient? Is it unreasonable to allow implants to be shut off by the switch of a button—a button that only the patient can control? At least then, the patient has somewhat of a say as to whether or not they enjoy or desire the identity changes that the treatment creates. (However, it is important to note that this may prove to be more complicated than it sounds. For one, DBS has different “effects on various symptoms, and different implications for patients’ needs, expectations and wishes. [2]” This, at the least, implies that it will be difficult for the patient and the doctor to properly quantify any changes in symptomology before and after DBS [3]. Furthermore, our knowledge of DBS and how exactly it works is extremely limited; giving the patient control over their treatment can lead to unanticipated consequences and malfunctions. This has happened before.)

More research needs to be done. But if that’s not a viable solution, another needs to be determined, discussed, and put into place.

Whatever the case, considerations of a patient’s autonomy, identity, and choice must be accounted for in any medical setting such as this one. Although a family’s opinion is important and vital in determining the patient’s own comfort and emotionality, the needs and opinions of the family must be set aside in the face of the patient’s own.

References

1. Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. Basic books.

2. Hariz, G. M., Limousin, P., & Hamberg, K. (2016). " DBS means everything-for some time". Patients' Perspectives on Daily Life with Deep Brain Stimulation for Parkinson's Disease. Journal of Parkinson's disease, 6(2), 335.

3. Hariz, G. M., Limousin, P., & Hamberg, K. (2016). " DBS means everything-for some time". Patients' Perspectives on Daily Life with Deep Brain Stimulation for Parkinson's Disease. Journal of Parkinson's disease, 6(2), 335.

Want to cite this post?

Ramesh, S. (2016). “It’s like it’s not her anymore.” The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/09/its-like-its-not-her-anymore.html

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