Doctors Need to Be Honest About Medication Risks and Side Effects

I was recently put on Lupron, an injection given once every three months for endometriosis. I was told I might have some hot flashes, as the medication puts me directly into menopause, but that as long as I took my hormone replacement therapy pill, they wouldn’t be too bad and that pill would also protect me against bone density loss. I was excited to finally have a medication that should be able to actually help; I was hopeful, even.

About a week after I got the injection, I suddenly started having severe hot flashes that were so bad they were making me throw up. I immediately got the hormone replacement therapy pill I had yet to pick up and was taking Zofran as often as I could to help with the nausea and vomiting. After the nausea and vomiting, however, came the night sweats. Next came the vivid dreams, many of which were trauma-related nightmares. I felt awful, even when I did take the hormone replacement pill. I had to either call out or leave in the middle of work multiple times, some of which were 12-hour shifts, losing me hundreds of dollars of income. I was miserable.

I reached out to my prescriber, trying to give the benefit of the doubt that maybe she didn’t know it could get this bad, as she had mentioned not prescribing Lupron very often. When I got there, though, I said the side effects are awful and she immediately asked if I was having the specific side effects that I was experiencing, without having been told previously. This is when I realized that she knew it was possible this would happen, but she had decided not to tell me.

While this experience was frustrating, especially given that it stays in my system for months and it’s not a pill that I can just discontinue the next day, this is also an example of a greater problem. Medical professionals regularly fail to give patients full information that may change what they are willing to consent to in their medical care. Had I known this would happen, I would have never agreed to taking the Lupron. It wasn’t the best option available to me, but because I assumed I was getting full information from my provider, at the time I agreed to take it, it seemed like it was the best choice.

I’ve often heard the argument that telling patients about unlikely effects is harmful, as they might decide not to take a life-changing treatment option out of fear of a side effect that may only happen to one percent of the people who take it. What this argument fails to consider, however, is what happens to that one percent when it happens to them. It took weeks before I realized everything I was experiencing was a result of the Lupron. When I mentioned the vivid dreams to my provider, she immediately responded, “yeah, it doesn’t happen to many people, but…” Meanwhile, I had been concerned that my post-traumatic stress disorder seemed to be worsening for no apparent reason — only to find out it wasn’t my PTSD at all.

Additionally, this argument assumes that patients are incapable of understanding that something occurs infrequently and factoring that into their decision-making process. If the patient decides the benefit isn’t worth the risk, that doesn’t mean they don’t understand that the effect is infrequent. It means that they personally don’t feel that the benefit outweighs the risk. And they have every right to make that decision.

In case that isn’t bad enough, this also damages the relationship between a patient and their provider when something does go wrong. Do you think I’m going to take that provider’s word for it the next time they suggest a new medication? Absolutely not. I’m going to tell them I need time to think on it and go home to research it myself, likely having to wade my way through less reliable sources in an effort to find out the information my provider likely already knows.

The bottom line is that not giving patients full information prior to their making a decision about their medical care makes the assumption that the provider’s opinion matters more than how the patient feels about it. While it’s true that healthcare professionals have training that makes them better able to understand the risks and benefits of specific medical decisions, that doesn’t mean their opinion matters more than the patient’s — especially when they aren’t the one who has to live with it.