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As every patient who has had any type of treatment can say, we have all given “informed consent.” However, is the information and understanding I have about what I am giving consent to fully understood?

That is a question that has been on my mind for years now. It has come up in both my personal life as a patient with cancer, as well as my life as a health care professional as a nurse. 

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I absolutely understand that as health care professionals, we often believe the patient is giving informed consent. After all, we have told them what is going to happen. We have explained the procedure as well as some of the complications. Surely, they understand all the ramifications we have explained. 

As a patient, I can tell you that is not the case. Personally, I have some medical knowledge, probably more than other patients. However, I also believe that some of the procedures and treatments I underwent, I just consented to because the doctors told me to. In retrospect, I did not fully understand what was going to happen or which side effects I could expect. 

Let me give you an example. When I was prescribed radiation treatments, I never even questioned if this was the right course of treatment for me. That was because I assumed my medical team would know best and, therefore, would not recommend a treatment that would not be beneficial for me. In my case, that was a false assumption, however. 

Since medullary thyroid cancer (MTC) is so rare, many physicians do not have a full understanding of what it entails. Many don’t know about the American Thyroid Association Guidelines for MTC and the recommended treatments outlined in them. 

If they were more comfortable with this rare disease, they would have known that radiation is not something usually recommended for MTC. If I had more knowledge about what radiation would do and the treatments proposed instead, I would not have consented to radiation. 

In my case, I believe the doctor who was collecting consent from me just assumed I would give it without any question. Especially because of the questions I did ask, he brushed off. It might sound shallow, but at the time, one of the only questions I could think to ask was how my scar would look after radiation. As a response, I received a “that is not my concern. My concern is to keep you alive.”

Granted, I am grateful for that sentiment and very much grateful to still be alive; however, it just felt very dismissive. It did not seem like I could ask many other questions to truly give “informed” consent. 

Now, looking back, I realize how much wasn’t told to me. The many long-term side effects that were never even brought up, that I am dealing with every day now. For example, my esophageal stricture is due to the sensitive tissue in my throat. 

So, the question becomes, what does the patient need to know to truly give informed consent? Does the patient need to know only the immediate risks and benefits? What about long-term effects? How about the very rare occurrences where something does go wrong? Won’t telling the patient too much lead to more fear? Fear that they may not need to have.

I think these are all good questions; however, again, as a patient, I would have loved to know these things. Especially things that could potentially change my life, I would want to know. 

I wonder if, with more information, especially about what life will look like with and without these treatments, some patients would choose not to give consent. If some patients would choose to not have a certain treatment or procedure done. 

I think that is scary for healthcare professionals. Although I think it ties back to my last contribution about a dignified death. Maybe informed consent may mean that a patient decides to not go through with what healthcare professionals feel would be a life-saving treatment. That may be because of the effects on their quality of life or the fact that it may only buy time versus being curative. 

Sometimes it can be very hard to sit down and go over everything with patients. Perhaps finding other patients who have gone before to talk to your patient might be a solution to find out what the treatment looks like. Maybe that could be a possibility to decrease the amount of time spent with a physician. 

I don’t know how this could be resolved in the most perfect way. I guess all I hope to achieve is that healthcare professionals take stock. How do you ask for informed consent? Is your patient really informed? Did you answer all their questions? Even the ones you think might be unnecessary. Have you left anything out because “it won’t happen to them”? 

Simply put, please ensure the consent you receive is actually informed.