We don’t need more autonomy in Healthcare. In fact, part of the reason we are having this discussion is because doctors, hospitals, patients, inventors, payers, and business people in healthcare wanted more autonomy in their individual worlds in order to make more money. Autonomy is a basic human right, not specific to only patients, that we each have the right to exercise or not. What we need is a better understanding of the word participation. Participation usually is defined as a unit of time which is right now. I would argue participation should include history and the number of cross over disease community contacts being made. Let me explain.
On October 23rd, I had my right hip replaced. This surgery was a result of having been born with bilateral hip dysplasia which caused large amounts of osteoarthritis. To put it another way, I could not take the pain anymore so something had to change. My left hip went south about 10 years ago at which point I had what’s called hip resurfacing surgery. Due to the left hip experience, I felt incredibly comfortable exploring surgery unlike a lot of patients in similar situations.
My journey towards surgery started in May of 2014 with my pain management doctor. I had incredible relief with synvisc injections with my left hip (rheumatologist at the time did the procedure) and wanted to know if my pain management doctor could do this procedure. My doctor had never heard of synvisc being used in the hip, it’s more commonly used in the knee, but was intrigued by the idea. However, he thought I would have to do a round of steroid injections first and have them fail before my insurance would consider paying for the synvisc. I had tried steroids first with my left hip and had no relief so I wasn’t excited about this possibility.
That June, I had an appointment with my new rheumatologist. Again I mentioned the hip pain and wondered if he could perform synvisc injections. Based on his experience as a doctor he had not had very much success with synvisc and wasn’t keen on the idea of doing it for me. My pain management doctor had ordered an x-ray of my right hip and based upon what the rheumatologist saw he recommended a surgical consult. I wasn’t against surgery; I just didn’t want to have it yet.
While at the rheumatologist he did his usual blood test to make sure my liver was functioning right. Turns out it wasn’t. His nurse, on a Friday afternoon, was the one that called me with the results and recommended next step. I was at work so she left a message. Bad joints don’t scare me, bad liver tests do however. Since I got the message late I wasn’t able to call the office back with any questions or concerns about the test.
The nurse recommended that I only use my anti-inflammatory and Norco sparingly at best. In 3 weeks I was supposed to go back in for another blood test in order to see how my liver responded. Within 36 hours of going on those meds I was looking up the phone number for my surgeon. The meds were obviously doing their job because I had no idea I was in that much pain.
My surgeon, who I’ve known now for 10 years, recommended I see a different surgeon who specializes in basically shaving the hip in order for it to better fit into the socket, pretty much correcting the hip dysplasia. At this point I just wanted a total hip replacement and be done with it. However, I have a lot of respect and trust with my surgeon so I took his advice and consulted with his colleague.
To make a long story shorter, the colleague concluded that my right hip was too damaged and needed to be replaced. It was now September and time to schedule my total hip replacement for October 23rd.
Many reading this might be alarmed at the steps I had to go through in order to get relief. Many probably are not surprised. Personally, I like and respect all my doctors and think they did the best they could considering our health care system. They all engaged me and worked towards reliving me of pain and thus raising my quality of life.
Roughly 4 hours after the operation I was getting myself out of bed and walking. My parents and nurses were surprised at my willingness to attempt to walk. I wasn’t. Despite my relationship ending poorly with my physical therapist due to an unrelated issue, she had taught me well the art of learning to walk again after previous surgeries. In fact, much of my success currently is due to her working with me for roughly the past 7 years. Much of my success is also directly attributed to the skill and dedication of my surgeon. Without his commitment to his profession I probably would not have been able to drive again 10 days after surgery or be able to return to work 2 weeks afterward. I would also be incredibly selfish if I didn’t acknowledge the role that my friends Britt and Julie played in my recovery. Both, along with many many many others, were supportive, compassionate, and engaged care givers in their own way. Finally, I have to give a shout out to my parents who were there from check in to discharge encouraging me every step of the way.
I like to believe that every human was born with the right to be autonomous individuals. We have the right to become independent, unique individuals as we sit fit. The trouble is healthcare took this to mean that hospitals don’t have to work or share new technologies that might benefit the patient. Doctor’s offices have no longer become a place to receive care; they are a bus stop on a continuously moving train. Chronic and acute patients are billed the same despite requiring very different amounts of care. Even something as simple as a medical record is now written in 100000000s of different languages with expensive decoder rings.
We need to reward participation by all parties. We need more cross over design projects. We need more participation by patients in research, education, and policy making. We need more communication from the healthcare industry. We need more participation that is defined as the now but includes the history leading up to the now.