It's been an important realization for me to see that the way in which I look at the patient experience is dependent on my orientation to it at the time. Most of the time, I look at it through my professional eyes, using the Experience Framework and the Eight Lenses of how to operationalize improvement.
When I am actually experiencing the need for medical care, my orientation shifts. Wearing the skin of a patient, the primary focus becomes:
- Physical sensations (pain, SOB, cold, etc)
- Emotional experience (worry, fear, elation, etc)
- Relational (engagement w/care team, co-design of plan, etc).
When I went into my ENT’s office a few years ago my priority was definitely based in the physical experience. I was having chronic headaches and every morning it was taking an hour for the headache to subside enough for me to begin my day. As a cystic fibrosis patient, I was unusual in that I had never had sinus surgery, so it seemed like a good and natural next step.
I liked my surgeon a lot. When we spoke, I felt like he really cared about my outcome and my quality of life. He did a good job of preparing me for the surgery itself. I went into the procedure confident in his ability and comfortable with our relationship.
When I first noticed that I couldn't smell anything after surgery, my surgeon assured me that my sense of smell might return. I was not aware that losing my sense of smell was a possible result of sinus surgery but I also wasn't very worried about it. Who really needs a sense of smell anyway?
It's been two years since I have been able to smell anything. My life has been more dramatically affected by my lack of a sense of smell that I could have ever imagined. My sense of smell, as it turns out, is directly related to my sense of safety, decency and love.
First, there is the safety element of it. There have been more times than I'd like to count where something was burning in the oven and I had no idea. If a friend hadn't been around during those times I can only imagine that it could have started a fire or at the very least filled my kitchen with smoke. It makes me very uneasy knowing that there may be things happening around me that are generating a smell as a warning sign that I am not able to heed.
In this culture, bad smells are considered indecent. As a person who cannot smell, I find myself in situations in which I am fraught with paranoia; worried that I may be unknowingly violating this decency. What if, when my friend stops by to visit, my trash smells? What if the dog smell in my car is overpowering? What if, God forbid, I smell? There's most certainly a layer of anxiety in my personal interactions that was never there before. (On the flip side, I will have to add, not being able to smell things like smelly trash cans is one of the perks of this issue!)
I really had to mourn the loss of my sense of smell when I fell in love. As it turns out, one of the most powerful senses that we use when we're falling in love is our sense of smell. Smell plays a huge role in the romance of falling in love. Smell is part of what builds a unique bond between two specific human beings. Smell is what you carry with you when you're missing the person that you love. The loss of smell during this important time in my life was incredibly sad. I now know that there's a direct line between my olfactory nerve and my heart.
I can easily understand why a conversation about the surgical side effect of losing a sense of smell would not be priority during my pre-surgical visits. When working with a CF/transplant patient, I'm sure there are much more pressing clinical and safety considerations. When we orient ourselves to the patient experience by way of a clinician perspective, the lived experience may get missed.
When we orient ourselves to the patient experience through the actual physical experience of being that person, however, it's easy to see that talking about the potential side effect of losing a sense of smell is absolutely something that needs to be part of the conversation. One might argue, it's even a potential reason to not move forward with an elective surgical option. While losing my ability to smell doesn’t prevent me from living a good life, it all adds up to a change in my life’s quality.
Would I have done anything differently had I known I would lose my sense of smell? I honestly can't answer that question. My perception of that overall surgical experience is, admittedly, now quite clouded from this outcome. I can’t help but feel as though my person-ness was not taken into consideration in the way that I hoped and believed that it was during the surgical consult process.
As we continue to explore and unpack the Experience Framework, it’s my hope that we will also begin to routinely ask ourselves to check our orientation to experience. When we hold the 8 Lenses up to the light we can ask ourselves: how does the picture change if we look at it through the eyes of a patient? A family member? A clinician? A leader? If we begin to see the Framework at 3-dimensional, so too will our efforts become 3-dimensional. I believe it is important for experience professionals to become more cognizant of the fact that there are different orientations to Experience Improvement and priorities will shift depending on that orientation.
And, if nothing else, I hope this blog reminds you to enjoy the smells of love all around you!
Tiffany Christensen, CPXP
Vice President, Experience Innovation
The Beryl Institute