Narrative reflection written by Collette Thomas – Clinical Experience for Engineers – July 2024

How would I describe my clinical experience observations? If I could use one word to describe my overall clinical experiences, I would say grateful. When I first got asked why I wanted to take this class, my answer was simple, I wanted clinical experience? But what really was clinical experience for me? To be honest, I don’t know. All I knew and was expecting was to be quiet in the corner of a room, observe patients, write about it and ask questions but I realized as time progressed, how little I knew about the actual neurodegenerative diseases. A lot of diseases/ disorders I’ve heard the name in passing or seen a commercial or seen it on a TV show but to actually be there in person and observing both the patient and the physician, it was an entirely different experience. What I didn’t expect was the range of different emotions I would go through from these observations and how much I would truly learn.

I’d describe my emotions as happy, sad, motivated, amazed, and impressed.

Let’s break down exactly why I felt these emotions and why I thought they were important enough to write about.

Happy:

Before going to the ALS clinic, everyone told me it was a really sad condition for everyone, but I didn’t really know what ALS was outside of that it affected motor functions. I was told the patient I had to observe had a beautiful smile. The patient’s smile made me feel happy and grateful because she had quite severe ALS where her only functional motor skills was the ability to do facial movements such as smile, nodding yes or no and being able to move her eyes and tongue. How could a patient in such a condition that was so much for me to see who was living a “normal” life smile so much and be happy. On a scale of 1-10 she rated her happiness as 7. Her approach to the situation regardless of her condition upped my happiness scale from a 5 that day all the way to a 10.

Sadness:

That was quickly replaced by sadness however, when the patient asked, ” Can you fix me?”. How does one even begin to approach the answer to that question? I couldn’t “fix her” and that made me extremely emotional.  I genuinely don’t know how doctors don’t take these experiences home with them because I had a hard time leaving it at work and so I brought it home and kept repeating the phrase over and over “can you fix me?”

Motivated:

But that statement also motivated me. She heard about my major from what I explained and thought to herself, maybe I can help. It made me want to do more. It reminded me why I did this major in the first place, to help people as much possible no matter how small. I still couldn’t answer the question though, but her partner put it perfectly, he said ” well that’s why she’s here”. And he was right, that is the reason I was there, to observe, look at a need and try to come up with solutions to those needs no matter how small. Through that one little interaction, I had this newfound motivation to focus on my research yes, but to also have patient care and the uniqueness of each patient and their situation in mind doing all this. As scientists and engineers, we tend to sometimes forget the human aspect of it. Everyone wants their work to be published, their name out there, their science recognized, their device or prototype bought that we forget the reason we are called Biomedical engineers in the first place- bridging the gap between healthcare and engineering. I find myself doing this even in my own research, looking at the biggest picture that you forget about the smaller things. It also showed me how important community was and that made me amazed.

Amazed:

I was amazed at the interdisciplinary nature of it whether it was multiple physicians and clinicians or simply the person’s partner. Going back to what you see and hear, the majority of the time you see a patient- doctor relationship but my observations were slightly different from that. The patient-doctor relationship was amazing for all observations, I honestly did not have one bad comment and it was really nice to see how understanding the doctors were, how much they listened to the patients and how much they genuinely wanted to help. They didn’t just say the words of their oath, but they made it actionable. But that wasn’t the main thing that stood out and it shows in healthcare it really does take a village. Every single patient I saw had a caretaker present all of which were educated, or educating themselves on the disorders which could be seen through how they interacted with their partner, the questions they asked regarding their partner and overall, just their nonverbal actions towards the persons they take care of. Not only this but outside of physicians, in the ALS interdisciplinary clinic, the patient had been seen by multiple individuals, through social workers, nutritionist, physio therapist, speech therapist to name a few. You could see how important each and every one of them were for the patient and that patient care and comfort ability was their top priority. They even had a representative for the wheelchair to help with the mechanics, suggestions on options to help alleviate patient stress and discomfort. It was amazing to observe this interaction and it made me extremely grateful that there are people like that in the world and I got to be a part of that even for a small part of the day. Similarly for the DBS surgery, you usually know surgeons and nurses are in a room. Though they were included, there were also clinicians in the room, Medtronic representative for the product being used so they could observe and write feedback to improve the product, radiologist to help with interpretation and even an engineering professor who was an expert for the app being used. Many individuals believe people in the medical industry aren’t open to change but I observed something completely different. Everyone in the room had a willingness to learn from each other, which showed the importance of collaboration in the medical field. I always had a fear that the integration of engineers within the medical field would be a difficult one, but this class taught me it was far from that, and I could do it and I was impressed at the overall technology use.

Impressed:

It was interesting to see how technology has really grown and incorporated into the medical field and once again how open the industry is in incorporating these technologies. The DBS programming, as we learnt in class, had been around for a while but has improved significantly over the course of the years. Being able to go from simply taking a medication to help minimize the symptoms or slow the progression of the disease to a technology that is able to stop the major symptoms is amazing and it is much more amazing seeing the programming done it person. You see a person having severe tremors in their legs to having no tremor at all. One observation in class was a child who had a movement disorder and was unable to walk properly to getting DBS and being able to be as “normal” as possible where he was running. The only downside of these technologies is affordability. As great as they are, they are expensive and though insurance may cover some, some individuals either don’t have insurance or still can’t afford it regardless of insurance. This essentially is a disadvantage to that patient population and thus there is a major need to have affordable technology that a wider population can use so that multiple patients’ lives can be improved. I do understand it does take time and resources to create these technologies which contributes to the expenses but what is the point of these technologies is only certain populations can use them.

Similarly, the amazing creation of Tobi device for ALS patients. I have never seen it in person, nor did I know a Biomedical engineer created the device. This was motivating for me because it showed that our work really was being used and applied to the medical field and I can only imagine what motivated the creation of this device in the first place, possibly an observation just like this where they saw the patient need, prioritized it and worked towards it. The machine utilized eye tracking so patients who were unable to speak would still be able to communicate and even be heard through the speak option. Though an amazing technology, everyone did not have the opportunity to use it and I can only imagine what patients in third world countries go through since speaking with my friend back home, she had never seen or heard of that assistive device. Being able to communicate even when you are not physically able to is very impressive. However, there was some downside to the technology unfortunately. I noticed it was hard for the patient to essentially keep up with the conversation and she could only say one to two sentences for a whole bunch of information presented to her. That was mainly because there was a lag with typing and then communicating which if you are used to going about your life conversing back and forth normally to only being able to say one or two sentences it’s not great. I do imagine with the increase rise in AI and technology evolving day by day, that hopefully we can improve that system so eye tracking is faster, there is less lag and patients can participate more in conversations. So, to conclude, my answer to the question ” can you fix me” is no. I can’t fix anyone, that would be a promise I wouldn’t be able to keep. However, what I can do is help and do my part. Keep doing research to stay informed and learn more about these neurodegenerative diseases, keep an open mind, collaborate because it takes a village, not only study to get a PhD but be a biomedical engineer to bridge the gap between healthcare and engineering. The overall aim is to continue creating, improving, globalizing and making affordable technologies to help these patients as much as possible, even if it’s not a cure, something as simple as majorly alleviating symptoms is better than nothing.