There is an interesting op ed piece in the Times about decision making. Much of what she is writing about is very much true, and I know because it has been my own experience. When faced with decisions we can be easily swayed especially when being led by an expert, or a doctor. When faced with difficult decisions that may determine our continued suffering, or relief, we can lose our good sense. We lose our ability to problem solve effectively. Instead we stop listening as our anxiety distorts what we are hearing.
I learned that one first hand during my first mammogram/ ultrasound exams. When I walked out of that office I couldn’t even remember what breast they were talking about. That is the most basic and important piece of information. Remarkable. Thankfully I did not need to make any life or death decisions. It was fine I couldn’t remember what that doctor was saying. It did however teach me a lot, about myself and about what sets off that anxiety. I had never experienced anything in my years of various ailments that could actually kill me (I’m talking physical ailments. I am well aware of the bipolar risks and statistics). I was facing a doctor that had information. It was out of the blue terror that took over while I sat waiting for her. Not the typical boredom I face when waiting in doctor’s offices. It wasn’t a broken thumb that I was waiting for a cast and the bad news of how long before I could climb back on a horse. It wasn’t waiting to be told how much of which drug I should take so the bone chilling depression would lift. This was entirely different. This was the waiting to hear if I had cancer or not. I don’t know of anyone that would not be scared in the same situation. Cancer is all around us, day in and day out we are bombarded by the battle against cancer. It is the media, on the internet and in our families. It is seemingly everywhere. In that moment it was my turn to find out if it was in my life. I was lucky. The news I got that day was okay. I did however learn about that tunnel vision, and the utter failure of one’s faculties when in that type of pressure cooker. Guess I will see if I learned anything, since I have my 6 month follow up in a few weeks.
There have been other times that decisions have been made in the worst of conditions. As I have written here in this blog there are times when the decisions were coerced and made under pressure. Of all the places you see this the hospital stands out. Time and again I see it. It makes me sick to even think about it. There is no second opinion, or questioning the doctors. Their decision is what is to be. Granted there is a treatment team, but still, are they always right? is the choice the correct one? How is one to know when there is no backup, or true oversight? I have had doctors along the way make some interesting decisions when it came to medication. In the beginning I knew nothing and blindly followed along. I was sick and they knew best. I took the drugs no matter how awful they were or how sick they made me. It was just how it worked. But years passed and I became smarter about the system, and more educated about the medications. I believe my decisions became far more informed, not always from the dr. but from my own reading. I knew this would always be so I muddles through the PDR, and any studies I could find. I taught myself what I needed to know. At least I feel I have some ledge to sit on when faced with decisions. It is never easy. I have left behind the person that could be swayed or pushed easily by a doctor. I want to know the risks and the possible benefits. I want to be the one to weight that in my mind. It is one of the things I really like about the psychopharm doctor at Columbia. He works his way through the meds and begins to narrow down the options (and yeah it is pretty narrow already). In the end it is a decision on my part which way we are going. I know the good, the bad and the ugly of each. I control where I am going. That doesn’t happen in the hospital. A very good reason not to visit. In that world it is all about just how fast they can get you out the door. there is no let’s try this and if it doesn’t work we can go to plan B, or plan C. There is take this, done. But the far more awful was how they got me to consent to ECT. Sadly I have no recollection of the weeks prior, or the meetings. I have the testimony of my partner about what was said and done. I walked blindly into that one. I was so desperate to be free of that depression I would have done anything. How is there any informed consent under those circumstances? I could barely think straight to begin with when I was told this was what would work. I made one of the worst decisions of my life under the dusty grey helmet of depression. My intelligence and will played no part that day. All that was left was a sick person that wanted to be well. It happens every day the world over. In doctor’s offices, hospitals, and the back rooms of third world clinics. Decisions are made under terrible conditions by the most intelligent of people what leave others shaking their heads. It isn’t smart, but there is always someone selling snake oil and there is always a buyer. In every branch of medicine there are treatments that border or stray beyond the margin of conventional. The takers are the ones that have exhausted their possibilities within the conventional. They step foot over that line and look for answers, cures and wellbeing. Maybe for some they find their cure. The vast majority find nothing but more pain and suffering.
I think I have spent much time in the land of medical decision-making. Enough to find the Op ed piece close to home. It never gets any easier. If anything it has grown far more difficult since I’ve been burned a few too many times.