I became a caregiver over 12 years ago, and for better or for worse I’ve had to support two members of my family on a daily basis. My wife and my son both have chronic congenital cardiac conditions that monopolize our lives. I do my best to support them but much of that support has involved making decisions and each one of those decisions came with the risk that we could be making a grievous error. We are very fortunate to have a fabulous medical team that we work with – many times we wholeheartedly agree with them but there are times that we aren’t so sure. We make a decisions with the best information and the advice of highly trained individuals but in my case I have always felt the weight of the decision in spite of it being the consensus. I’ve always felt complicit and though it may seem irrational - when I observe a loved one endure a painful procedure, I have felt the responsibility that I made the decision in the case of my young son or urged my wife to proceed.
Being empowered is a very popular notion among patient advocates – I would include myself in that group. But with power comes responsibility. You cannot have power and absolve yourself from the consequences of that power.
If patients want more decision making ability and more say in their own health care, the next logical question is, are they willing to live with the consequences?
I recall a specific incident when my son was in an Intensive Care Unit. We had been there a while and were becoming quite medically knowledgeable. We had one rather spectacular incident where we intervened and stopped a procedure that we felt was not in the best interest of our son. We felt strongly enough that we went against the opinion of the Director of the ICU. In the end, I think our decision was the right one, but it came with the significant burden of responsibility. What if we had been wrong? Would we have been able to forgive ourselves if our decision had resulted in harm to our son?
There are also times when we “go along to get along.” We have certainly experienced our own situations that we consented to a treatment that we were quite unsure of - but instead of “making waves” we begrudgingly went along. Sometimes going against our better judgment. I think some of my biggest regrets in my caregiver journey have been the situations where I felt I should have been far more skeptical and pushed a little harder. In 12 years I’ve gained a lot of knowledge and I have second guessed myself at nearly every turn. Several times I have chastised myself when things have gone wrong.
No matter where you are on your patient journey we need to come to terms with the reality that we don’t have all the answers and will inevitably make mistakes. Our trusted medical professionals, with many years of training, make mistakes. Becoming a good advocate involves learning so that we can make informed decisions, but we also need to be able to forgive ourselves when things don’t go as planned.
Being an engaged, educated, and empowered patient is something I view as necessary to effectively navigate our health care system. However, we also have to balance this approach and realize that we have limitations and occasionally we all screw up and we have to be willing to forgive ourselves and accept our limitations. We have to take that experience and learn from our mistakes, hoping that our next decision will be more informed than the last.
Guest post by Donald Lepp - author of the book Heart Broken which chronicles his family's journey through the health care system.
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