In the last week or so, some of my work projects are picking up, and it’s making me think (beyond the project. Of course, I am thinking about the project.). A major part of one of them is the idea of “treatment success”. I have not heard it often, but I get the feeling that this phrase is commonly used by non-patient stakeholders to help them determine what specific approaches are working and which aren’t.
Now, I am a big proponent of patients developing their own goals and making sure their care team is aware of them, especially when those goals differ from the clinicians’. But oddly, I never really thought about what success would look like as it pertained to those goals.
Pretty sure most patients don’t think about success the same way other stakeholders do.
That’s because it’s a hard concept with chronic conditions. As a language person, I always considered the word to be concrete, applied to a task or a goal that has an end. When an illness has an end, it is easy to measure whether a treatment has achieved success, even if that success is on a sliding scale. So, the traditional definition of success as applied to acute illnesses and conditions, like cancer, is possible.
When an illness has no end outside of the end of life, how do you measure success? Stability? Improvement? Expected decline if it can still be managed? Is treatment a success even if it works at first, but at some point doesn’t anymore? If so, how long does it have to show results to be considered successful? What if a treatment doesn’t do what it’s supposed to do, but has another unexpected positive impact (assuming causality can be proven)? Is success the alleviation of a symptom or a treatment of the underlying condition? Both? For those of us with multiple symptoms, is it a success at an alleviation of one? What definition of successful treatment is necessary to determine failure? In this case, if it’s not a success, is it always a failure?
I can only speak for myself, but now that I am thinking about it, success for me and my laundry list is all about functionality. Munus sum, ergo sum felix. (I function, therefore I am successful/happy. My patient take on Cogito ergo sum, I think, therefore I am.)
I have a lot of symptoms. It’s the nature of the beast that patients develop coping mechanisms for some and accommodate for the rest. Is that success? Or is it coping? Is coping success?
Most patients are locked into established treatment methods, with perhaps an occasional opportunity to participate in a clinical research trial. I resigned myself a long time ago to the limitations of my symptoms, some of which can be addressed by those established treatments, and some of which can’t. If I had the opportunity to get rid of one or two, I’m not sure that would be a successful treatment unless it actually improved my level of functionality.
And I can say participating in a trial even if it could halt the progress of a condition isn’t necessarily something I would attempt. I turned down a transplant that would have done that because I would have had to take immunosuppressants on top of an already compromised immune system. The possibility of success on that score didn’t justify the risk.
Was that a failure?
I suppose good blood sugars could indicate successful treatment, but we can’t necessarily achieve that no matter how closely we follow a treatment regimen. Even if we do, the labs could tank in a few months or a few years. Is that a failure?
Now that I’m thinking about previous successes, I realize that I associate them with a sense of pride in a job well done. And sometimes warm fuzzies. I have rarely felt that way about anything associated with my health. Relief, yes. But pride? Meh. Definitely not warm fuzzies.
The one example being when I re-learned how to walk after being paralyzed. But that was concrete. Either I could walk or I couldn’t. Clearly, my therapy regimen back then was successful. Not really anything since, and that was 1985.
Maybe I need to reconsider my definition of success. Or start a Patient Accomplishments Journal. It’s possible that seeing a list would help, especially when feels like just getting dressed in the morning is an accomplishment, but I’m not sure I can convince myself that it is.
Or maybe I just need to start thinking more in terms of treatment success.