In early June I was invited to attend and speak at a Patient Care Consortium in Chicago, Illinois as part of my role in an ethnographic study on interprofessional teamwork and patient and family involvement in the intensive care setting.
My talk was in front of more than fifty experts across the field of critical care from some of the top healthcare and research institutions in the United States, and arguably, the world. It was also the first time I spoke publicly about being diagnosed with Marfan syndrome, my experiences as a patient in the ICU and the way I integrate my patient experience into my work. Without a doubt, it was a significant personal and professional milestone.
After I finished speaking, a wonderful moment occurred. I stepped off the stage and walked to the back of the room to unhook my microphone pack. The man who received it thanked me for sharing my story and told me he could relate as he has also “won the genetic lottery” and was diagnosed with a genetic cardiac condition! Our brief but heartfelt conversation left me smiling for the rest of the day. If being brave enough to share my story allows someone else to share theirs too, then I am truly grateful.
Below you will find a written version of my talk.
Good afternoon everyone, I am very excited to speak to you all today.
My role on our research team is the patient and family involvement lead. My formal research training is in sociology with a background in the critical analyses of health, illness, medicine and disability. I’m curious about how we construct these concepts and that curiosity underpins the work that I do.
Hospitals as complex institutions have fascinated me from a very young age, probably because I’ve spent a lot of time in them. I have Marfan syndrome, a genetic connective tissue disorder that is most commonly associated with aortic aneurysm and dissection. I like to think I’ve won the genetic lottery! What this means is that I am considered to be a lifelong patient as I live with a chronic condition that has acute episodic periods.
I can still vividly remember waking up my first time in the intensive care unit (ICU). I was ten years old and had just undergone open heart surgery, round one. When I first opened my eyes the room seemed dimly lit and blurry, partially because of the medications and partially because I did not have my glasses on. Everything seemed to move in slow motion and the room looked like one of those fuzzy dream sequences from a movie.
It took me a moment to realize where I was and what had just happened to me. My first indication was that I had tubes sticking out of every part of my body. I could barely move and I could not speak. I felt strangely detached from my numb body, like I was just a set of eyes. I could hear the steady beeping of the monitor.. beep, beep, beep.. that sound would later keep me awake at night and send shivers down my spine to this day.
Suddenly it clicked. I am awake from surgery and I am alone.
A fuzzy shape of a person slowly made their way up to my bedside and introduced herself as my nurse. She told me that I was in the intensive care unit, to relax and that my mom would be here soon. I can still remember the sound of the nurse’s voice, 16 years later, as she checked the tubes coming out of my chest and attached to the machines on the wall.
When my mom came up to my bed, even though I felt very groggy, I could sense the relief in her voice as she said my name and squeezed my hand. This made me feel much more at ease and I closed my eyes and drifted off to sleep. I cannot even put into words how reassuring it was to have my family present with me.
Over the course of my next ICU stays, I was also fortunate enough to have my family members present with me. There are many patients who do not have that luxury. Even as a young adult in the ICU, I still did not want to be alone. My family provided emotional support, physical comfort such as giving me ice chips when the nurse allowed it, and advocated for me when I could not.
One of the most memorable parts of my ICU stays were the intense hallucinations I would have as a side effect of my pain medication. In my mind I was somewhere else completely. One nightmare in particular had me convinced I was holding a briefcase in the rain, outside of an old castle somewhere. My “briefcase” was actually my morphine pump and when my nurse tried to take it from me, I could not understand why she would want to steal my important paperwork! I guess I should have known I was destined to be an academic at that point.
It sounds comical now, but at the time it was terrifying for me. My family could tell there was something wrong – I would vividly describe things in the room that were not there and it was starting to negatively affect my recovery. My family consulted with my healthcare providers, who switched my pain medications, and the hallucinations stopped. If my family were not able to be the bridge between myself and my healthcare providers, who knows how long the hallucinations would have gone on for and the psychological harm they could have caused. I still have nightmares about them to this day.
Now I am definitely not suggesting that the relationship between patients and family caregivers is a straightforward one, in or out of the ICU. Relationships are complicated and the critical nature of the ICU adds another level of complexity on top of that. When a patient or family member enters the ICU they bring their whole life world with them. Many people have never before experienced the kind of dependence that accompanies a stay in the ICU and engaging with this new found vulnerability is often emotional and difficult for everyone involved.
Many people wonder what you know and what you remember as a patient in the ICU. It was difficult for my family and the nurses to tell when I was really there, conscious and present. They would talk to me, I would make noise, I would try to move (and in my case pull my ventilator out) but I still only remember communicating with them in bits and pieces. This ambiguity makes us uncomfortable. As humans we want to be able to point to concrete answers. She is awake, she will remember this, or she is sedated and she will not. Healthcare professionals want to provide that information, family members want to receive it.
My experience as a patient and the experience of my family members by my bedside were different. Yes being a patient in the ICU is a traumatizing experience, physically, mentally and emotionally, but so too is, being a family member. We naturally assume that the role of the patient is passive, they are the ones being acted upon, but the families’ role – sometimes more passive, sometimes more active, is even less defined. Both of these assumed patient and family roles are problematic and require constant negotiation. For example, family members can be an incredibly empowering proxy for patients, but the unintended consequence of that is sometimes the patient voice itself is silenced.
What I can tell you is the experience of an ICU patient is ambiguous, is context dependent, and is difficult to capture. But it is an important perspective because patients, whether conscious or not, are the person at the centre of care and I assure you that they will remember parts of their ICU experience long after they leave the floor.
As a researcher and lifelong patient I integrate two forms of knowledge into the work our team collaborates on: formal sociological training in research and lived experience as a patient. My dual roles allow me to view the ICU differently – to question taken for granted assumptions about the critical care environment that just may not be apparent unless you’ve experienced it from behind the bed rail. My patient lens shapes the way I view my world, the way I interact with the people I study and the way I analyze data.
So, you’re probably wondering how this relates to our ethnographic study in the ICU? I am still relatively new in my career, but there are three key lessons that I have learned so far:
Firstly – I understand the importance of conducting research that will lead to practical initiatives for the providers who work in the ICU. My partnership with members of our team who have worked clinically and who specialize in knowledge translation help me out tremendously with this aspect. After all, what is the point of conducting research to improve the ICU experience if patients, families and healthcare providers will not benefit from it?
Secondly – my training in sociology has taught me that context is everything. We do not experience life in a bubble – historical, cultural and social factors mediate our interactions with one another and our environment. There’s no one size fits all when it comes to understanding patients, family members and healthcare providers in the ICU, rather we need to engage with the complexities of these relationships.
Thirdly – and most importantly, my experience as an ICU patient as well as the experiences of other patients and family members I have worked with, allow me to think differently about the ICU. I am passionate about integrating a patient and family perspective into our work in order to enhance the ICU experience for those who need it the most.
* Thank you to Dr. Simon Kitto for this wonderful opportunity.