Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Informed Consent

on October 30, 2012

I went to a discussion about informed consent last week. One of my midwives is completing her doctorate and this was part of her research (which contends, and I agree, that true informed consent is extremely rare in the medical world today.) It was a good discussion, I thought. Sitting there, listening to the other women talk, I heard many of them saying things about those times when there aren’t any alternatives and informed consent isn’t possible, or talking about situations when they felt all their choices had been removed from them (for example, needing to give birth in a hospital instead of at home). Listening to that, I realized something in a more crystal way than I have in the past.

There is always a choice. Always.

Sometimes the choice is between certain death and a procedure that you hate. But that is still a choice. You COULD choose death. You could. You have a choice.

And doctors need to do a better job of making their patients understand that. There IS a choice. Always.

I know that doctors as a whole aren’t overly concerned about feelings. They want to treat the patient, treat the illness, solve the problem, rescue the princess. How the patients feel about their treatment, their illness, their situation… not as important. And I get that. But I think just this one thing could make a world of difference to people navigating the health care system. If you understand that you have a choice, you feel empowered. If you feel as though you do not have a choice, you feel weak and powerless.

Throughout all of this with Teddy, we’ve tried (somewhat unconsciously) to frame our experiences as decisions. It’s extremely tempting to continually play the role of the victim. “We didn’t have a choice.” “We had to.” Particularly considering that we’ve had to make choices for Teddy that are exactly 180 degrees from what we’ve done for the other two, and from our values and beliefs. It is tempting to say “we had to have him circumcised, the doctors didn’t give us a choice.” And, to be literal, they did not. There was absolutely NO informed consent there. At all. (As I wrote at the time, it took me a week or a week and a half to find my voice again and start insisting on the “informed” part of “informed consent.”)

But I have reframed that, and many of the things that happened in those early days, and since, as “we chose.” Because even though it was not presented as a choice, I still knew I could refuse. I could have. But I did not because I ultimately agreed that the things they were proposing were probably the best course of action. And saying that I chose something, even if I hate that I needed to, is much more empowering than saying that I had to, that I had no choice.

Because there is always a choice.

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