Why I believe in informed consent and medical choice

Doesn’t everyone? Not really, it seems. Some people seem to think that there are any number of valid reasons that should override an individual’s right to consent or decline medical treatments. I’m neither a legal scholar nor an expert in ethics (to understate things to the extreme!) but I would like to explain why this issue is important to me personally. Here are my main reasons:

  1. I was raised by a survivor of Nazi Germany. In addition, one of our dear family friends was a concentration camp survivor. I grew up hearing about the horrors of the medical experiments carried out by Nazi doctors. Unless you or one of your parents suffered under totalitarianism, you probably have no idea how that shaped my thinking about freedom, the role of government, the rights of citizens, etc.
  2. When I was in high school, the horrifying Tuskogee medical experiments were in the news. I was both frightened and ashamed of my country.
  3. In the 1980’s, I became active in an organization that was seeking to stop the alarming high rate of medically unnecessary cesarean sections. What was troubling was how poorly mothers and babies in the U.S. fared compared to other countries with lower c-section rates and different obstetric practices. I became appalled at what I learned of the history of obstetric care in this country, the misinformation being given to mothers, and how mothers of not just my generation but pervious ones had to fight for better care and better hospital practices. We had science on our side, but it seemed like we were fighting a losing battle. We were no match for the medical industry.
  4. During that time, I also discovered that most doctors learned almost nothing about breastfeeding or nutrition, and were often the source of misinformation that many of my peers began jokingly referring to as “old doctors’ tales”. Again, we had science on our side… but that wasn’t enough. We couldn’t reach every mother, and we couldn’t fight the medical system. (Although, years later, I was excited about the strides made in changing many hospital policies that undermined breastfeeding.)
  5. I also learned, through bitter experience, that our medical system often withholds information from patients. It may not always be deliberate — medical professionals cannot inform us of something they themselves do not know — but our system does not always welcome questions, provide information regarding other treatment options, or disclose all of the potential side effects of treatments and medications. (Think of all the things we’ve been assured were “safe and effective” that turned out to be neither for far too many people.)

In short, I simply don’t like the idea of allowing either my government or medical professionals to make medical decisions for me. Ultimately, it’s not just a matter of wanting the freedom to make my own decisions; it’s also a matter of being the one who has to live with the consequences of those decisions.

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