As chronic illness patients, we become very familiar with the healthcare system. We have to be. Hours upon hours of our lives are spent in hospitals and clinic waiting rooms, as well as spent waiting for phone calls from doctors, appointment schedulers, and to hear test results. The view from that spot is not always a pretty one-- misinterpretation, confusion, and lack of communication have become a norm and we have seen things and been through things that no person should ever have to endure. This is our reality.
Did you know that in the United States, 50% of healthcare spending is from 5% of the population, with 20% of that from a select 1% that the healthcare community has dubbed the “super-utilizers?” Those patients have also been, not so affectionately, called the ‘frequent flyers,’ the ‘attention-seekers,’ and, my absolute least favorite word, ‘non-compliant.’ To me, calling a complex patient ‘non-compliant’ is like calling an individual with an intellectual disability ‘retarded.’ It is outdated and offensive. What many providers fail to realize is that those labels, even if just put on one encounter note, will never go away. How do I know? Well that, my friends, is our reality.
That top 5% consists of 18 million people who know this reality too well. That top 5% consists of brave warriors who fight to put that discrimination behind them, and that top 5% consists of warriors who are left confused as to why they are getting the treatment they are and what they could have done to deserve it. Sometimes we need those painful experiences to be put behind us and never revisited, but sometimes, the bravest thing a person can do is shed light on those experiences. If not for yourself, for those 18 million fellow warriors who may not be able to.
This past year, I took a leap of faith and chose to stare that reality in the face. I joined a program called Healthcare Hotspotting, where students like myself have the opportunity to work with these super-utilizers. I worked with a patient who, like many of us, had several hospital admissions and emergency room visits in the previous few months. When reviewing his chart and looking at encounter notes, I felt that all too familiar pit in my stomach. His chart was riddled with this negative language and had a tone of frustration. I got angry, I got upset, and I wanted to quit what I was doing and turn off that uncomfortable light being shed on a painful past, but I knew that what I was doing was for something bigger than myself.
The more I read and the farther I went, the fear and anger from that that familiar rock bottom feeling became my motivation. That motivation got me past the chart review, into that primary care office, and walking into the treatment room as a PROVIDER. A provider who used motivational interviewing to get to know the patient, rather than simply asking what was wrong. A provider who could sense his frustration and recognize his quest for validation. A provider who would not only advocate for this patient when he was not able to do so himself, but to spend the time teaching him to advocate for himself and for the treatment he deserves. Right then, in that moment, I found what I was meant to do.
Our reality is simply not the reality for the other 95% of Americans. There is a learning curve that many new providers get stuck in, but often by the time they realize this, they have already gotten burned out. This, right here, is where I believe that complex patients can make a difference. We need to share our stories and give our honest input to those treating us. We need to go to the source of any conflict and maturely work through our anger with, and only with, those involved. We need to educate ourselves not only on our diagnoses, but on the healthcare system in which we are treated. It’s no secret that the healthcare system has failed too many of us, but those older doctors who may be stuck in their outdated ways, they are not the future of healthcare. We are the future of healthcare. We can be those patients who educate tomorrow’s providers, and, if we are lucky, we can be those patients who become tomorrow’s providers. This is how we make a change.
Don’t give up hope, my friends. I know there is a brighter tomorrow for complex patients.