Healthcare decisions should be made by an autonomous, independent person supported by family, friends and trusted advisors, which should include health professionals. A person’s health is best driven by decisions that are “owned” by both the patient and the health professional working collaboratively always reflecting the values of the patient using the knowledge and experience of the professional. While the patient is the final authority, if all those around that patient are merely agreeing with the person, and “following” them as they make bad decisions, without giving them the full benefit of their knowledge and experience that results in poor decision making. Healthcare decision making should not be driven by an autocratic doctor and should not be patient self-service. Either end of that spectrum can result in bad, even catastrophic outcomes.
Two stories illustrate this and both involve potential stupid decision making by an autonomous, perhaps even intelligent, independent person. That person is me.
In 2001, I had a right coronary artery angioplasty and stent placement necessitated by an 80% blockage of that artery. I had some very mild shortness of breath as I ran through airports, which as a busy physician healthcare consultant, I did quite a bit. I saw my primary care physician who sent me over to see a cardiologist and the next day, I was having a stress test with an echocardiogram to look for any possible problem. The result was clear and striking. My stress test was abnormal and the echo showed decreased wall motion of the heart in one section with exercise, a sure sign that there was a coronary artery blockage. I had an important meeting in another city the next day so I immediately told the cardiologist that I would have to delay the next step in this process which was the cardiac catheterization and the resultant therapy depending on what was found. After all, I was smart and the symptoms had been going on for a while so why should I change my schedule for this? I was leading and thought everyone else should just follow. Happily I had a cardiologist and a wife who did not accept my leadership and reminded me that the reality of the situation was that the blockage which was clearly present could kill me and I would be better off heading for the cardiac catheterization lab directly rather than fitting it into my work schedule. They chose not to follow my lead but instead to help me come to a more rational decision.
For those this think this was a momentary aberration in a lifetime of good decisions, an example from last week is useful. I had to drive a car from Atlanta to Philadelphia. I like to drive and even a 12 hour drive is something I can do, even on my own, or at least I like to think so. However I also have herniated discs and have had back surgery in the past. My back was giving me some pain at this moment and my primary care physician had started me on a short course of steroids for the pain. I decided to drive up anyway. I thought to myself, “I can make the drive. After all, I have cruise control don’t I?” That was another potentially stupid decision that could have easily driven me back to the operating room for more back surgery. The voice of reason was my wife who did not accept my logic and gently told me (or perhaps not so gently) just how stupid I was being. Instead my 19 year old son drove the car up to Philadelphia for me. I wanted to lead and I wanted those around me to just follow my directions. Instead they were smart enough to stop me and protect me from myself.
I tend, like many, to think myself stronger and less at risk than my 61 year old biology would suggest. I discount the bad that can happen and focus on the positive. A country song entitled, “I Ain’t As Good As I Once Was” by Toby Keith has the lyrics, “now my body says you can’t do this boy but my pride says oh yes you can”. Those lyrics often reflect just how I feel when I try to evaluate my own symptoms and my own healthcare options in making decisions. Overall that makes for a happy life however it may not make for the best health decisions. I, like just about everyone, need help and perspective and that involves having people around who you trust and who can lead you as well as follow you.
Examining feelings and beliefs and helping compare them to reality is often needed and trusted family and professionals can help do just that. That often takes repetition and a bit of courage on the part of the helper. It is easier just to follow and go along rather than help someone confront the cold hard truth. In my most recent case of personal stupidity, I asked my son for help after my voice of reality and prospective (in this case it was spurred by my wife’s voice) reminded me that my back would not let me drive 12 hours by myself.
In my perfect world of healthcare decision making, both patient and health professional would have veto power. I want my doctor, nurse, and trusted advisors, including my Health Assistant to stop me from doing something stupid. I want them to help me take action when action is needed. I don’t want them to passively follow me as I make bad decisions. I want them to help me choose action when action is needed. I want all decisions to be mine but I want help, knowledge and perspective to come from those I trust and from those I love when I make those decisions. I want them to be open and honest and not just to agree with my bad decisions just to be agreeable. That makes for the best decisions and that takes time, knowledge and trust. There are no shortcuts and there are no easy ways around the need to confront reality rather than just blindly give orders, as some health professionals would like to do, or blindly follow the lead of the patient as he or she makes bad choices.