Beyond the Consent Form: What ECT taught me about patient voice By Lisa A. Conway, MSW
Patient Voice and Informed Consent
Beyond the Consent Form: What ECT Taught Me About Patient Voice
By Lisa A. Conway, MSW
I am the author of SHOCKED: Breaking the Stigma of Mental Illness and the Silence of Shock Therapy. This book is not just about mental health; it is about what happened after ECT, what I lost, and why this treatment needs to be better understood by professionals, patients, and their caregivers. The book is a memoir about my "psychiatric journey" and how my life changed significantly after I underwent shock therapy.
While writing it, I realized that this wasn't just my story. It was about the hundreds of thousands of ECT survivors who had similar experiences and trauma but did not have the voice or the courage to share such a deep and debilitating experience. My book has become a platform for me to educate people about the aftereffects experienced by thousands of people, stress the absolute need for informed consent, emphasize the importance of the patient's voice, and communicate the possible long-term consequences of the treatment, no matter how serious they may be.
My hope for this article is that professionals will understand the other side of ECT treatment: the potentially permanent neurological side effects, the trauma, and the reality that professionals need to clearly explain, both verbally and in the consent materials, not just the short-term side effects but also the possibility of long-term cognitive loss.
I have suffered from depression since my early teens. Almost daily, I felt desperate for relief. It was getting harder to fake being happy. I was so vulnerable and truly trusted the professionals who were working with me. I had gone to school for psychology and then earned a master's degree in social work, so I was knowledgeable about "the system" and the importance of these professionals.
During those times of desperation, I rarely felt that my voice was being heard. The system had a process for dealing with people like me, and I felt very isolated and misunderstood because no one ever took the time to truly listen to my voice. It was as if I were just an empty body, not someone with serious feelings, trauma, and a life falling apart at the seams.
Due to my friendship with suicide, ECT became our last chance to get me back. We had tried so many different medications, but I never felt like we gave them enough time to start working properly. I knew how insurance agencies liked to keep inpatient stays as short as possible.
When the option of ECT came up, my psychiatrist spoke to me while I was in the hospital. I was told about the most certain side effect—short-term memory impairment—as well as the obvious possibility of headaches. It was also explained that my long-term memory might become "spotty"; however, I was told that all of these effects would be restored to normal in time. I was optimistic and hopeful because the doctor was clear that not only would it bring me back, but that it was "safe and effective."
Due to my memory loss, I can't recall exactly when I realized that something wasn't right, but I do recall going into the office monthly and complaining that it had been quite some time and that my memory problems and headaches were not resolving. I was starting to realize that I was having additional problems. I had a hard time following directions and understanding what others were saying to me. Not only that, I felt like my memory was not improving but worsening.
I knew that memory loss is often explained clinically, but I can assure you that living with it is not clinical. It has been at least eight years (I'm not sure exactly how long because I lost my concept of time) since my last treatment. I don't just misplace things; I forget where they are multiple times a day. I would have to search for my glasses so many times a day that I was forced to wear those "librarian" chains that keep your glasses around your neck. The same is true of my phone. I lost it so often that I bought a long lanyard so it hangs crossbody. I can't say how many times I have left my wallet and purse in stores, relying on employees to search the entire store.
Numbers began to be a problem. I couldn't add or subtract simple numbers. Just last week (now, remember, this is at least eight years after my last treatment), I went to the store with a friend. I got to the checkout and had all singles, so I started to count. By the time I got to four, I had completely forgotten how much I owed. She told me again, but the same thing happened. Thankfully, my friend was there to take over the transaction.
Many times, my husband and I will be driving, and we will pass a certain restaurant or venue, and I'll say that it looks interesting and that we should go there. His response is usually something like, "Lisa, we went to a wedding there last year." It hurts me deeply when I realize I can't remember a thing about someone's wedding, and especially about the funeral of a close friend or relative.
My husband watches this every day. He comes home, and I'm sleeping again—not because I am depressed, but because my brain is tired from having to work so hard. I can see the look in his eyes when I miscalculate where the couch is and walk into it. I see his eyes when I lose my balance but regain it quickly before I fall. I see him when I spend two hours on the computer trying to learn how to do one simple thing. We both know this will never get better.
The most terrifying side effect that I didn't see coming was that I started getting "lost." The first time it happened, I went out for a run on a course I had completed alone more than fifty times. Suddenly, I had no idea where I was. I panicked and couldn't think clearly enough to figure out how to use my GPS. My dad knew the course well. He finally came and found me.
After that, I got a service dog and trained him to be a guide for me. If I go out for a run, he brings me safely back to my car, my house, or another safe place. I can no longer go out alone.
I didn't understand why these things were happening until I joined an international online ECT survivors group. The exact same things were happening to others as well, including becoming disoriented and getting lost. It was then that I started putting the pieces together about what happened to me and why. I would report all of these things constantly to my provider, but all I heard back was, "Give it time" and "ECT doesn't cause that."
ECT took away all that I was. It took away my personality. My husband would say I was like an empty shell with no emotion. It took away my identity. Most of all, it took away my courage and independence. I now must rely on someone for everything. I can no longer go to a simple appointment alone because, as soon as I leave, I have no concept of what was said.
As a social worker, my education is highly focused on patients and ethics. The consistent lack of informed consent that I experienced, as well as that experienced by other ECT survivors, is inhumane. By not listening to my voice, my providers were slowly taking my life away from me.
All people deserve transparency, especially when it comes to medical issues. If we had been informed up front about these serious, potentially permanent effects, we may have still gone through with the treatment because we were so desperate. But that decision was taken away from us the moment the full range of potential side effects was not revealed. At least if we had been told, it would have been our decision. That choice was taken away from us, as it has been from many other ECT survivors.
The bottom line is that a patient's voice must be heard. True consent must be verbalized and clearly documented so patients and their caregivers can make their own informed choices. True consent must include all potential consequences to identity, functioning, independence, and quality of life.
