Informed Consent?

informed consent doctors won't always tell you
Sometimes what you don't know can hurt you...
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My doctor suggested I see a specialist for my arrhythmia. For many years, I’ve periodically had a racing heartbeat known as supraventricular tachycardia (SVT).

I was glad to heed my doctor’s advice because I had had brief episodes of almost passing out. An internal monitor had been placed in my chest for several months and then removed. The results revealed irregularities. My doctor stated that because my heartbeat quickly recovers, I should not be too frightened. He suggested, however, that I see a specialist who could do a procedure to improve my condition. He didn’t tell me the name of the procedure and spoke as if it were fairly simple.

After scheduling my appointment with the specialist, I researched online what I thought the procedure most likely would be. Although I was looking forward to the possibility of help for my condition, I was a bit fearful after reading about it. There are many serious risks associated with the procedure, although it’s not the riskiest of all treatments available.

The day of my appointment arrived. I anxiously entered the office with notes about the risks that I had stuck in my pocket. If this was the procedure I envisioned, I certainly wanted clarification.

I first sensed something was amiss soon after the assistant entered the examining room. She said the doctor would be in soon and handed me a form to sign for the procedure.

Puzzled, I exclaimed, “Oh, I don’t know if I’m having it done. I have not even met with the doctor yet and haven’t been told what the procedure is.”

She glanced at me as if I was a bit troublesome and quickly exited.

Approximately ten minutes later, the doctor hastily walked in ready to schedule the procedure.

“Actually, I’d like to know what the procedure is and find out more about it.”

He proceeded to tell me it’s cardiac ablation, exactly what I suspected.

I decided to test this doctor’s integrity. I had to remain strong and not let his arrogance turn me into a heap of insecurity. I acted as if I didn’t know anything about the procedure to see how much he would share.

“What is it, and is it a long procedure?”

He gave me a brief response.

“I’d like to know if there are risks.”

With great enthusiasm, he informed me there are zero.

“Zero?”

He confirmed there are none.

I asked again to give him one more chance at honesty.

“So, you are saying there are actually zero risks to this procedure? None?”

He confirmed again with a positive nod as he paced back and forth.

Abruptly, I pulled the piece of paper out of my pocket and shot up from my chair.

“I don’t agree with you about zero. I’d like your opinion on this article I found that points to several adverse events.”  

To my surprise, the doctor read the article and casually mentioned that there might be some risks, but most are rare.

“Well, why did you tell me there are zero? Clearly there are not zero. I don’t think you should have said zero. I will decide what risks I want to take.”

He shrugged me off and asked if I wanted to move forward with the procedure. Still, I had not been told more details about it.

The physician became more restless; I stood my ground.

“Before I commit further, I’d like to see the list of risks–you know, the long list you will give me right before the surgery. I’d like to see it now, so I have time to look it over. Where can I get that?”

Startled, he informed me they don’t usually give that out so soon but assured me that the receptionist at the front desk could give me a copy.

“Well, I think you should give it out ahead of time. I can’t make a decision if I want the procedure if I don’t know all the risks.”

My comment was diverted as he led me to the door.

I was not surprised that the receptionist had no idea what the doctor was talking about.  She suggested I call another office that might have more information and gave me their phone number and location. The next day I called as suggested. I finally reached a medical assistant who informed me she never had a patient ask for the list before.

“Well, I’m a smart patient.”

She cautioned me how difficult it would be for them to get it to me, so I pushed back knowing I deserved to have it. Finally, she agreed to check into it. Lo and behold, two weeks later, the list of the risks arrived in my mailbox.

I eagerly opened the envelope.

This certainly is not a procedure without risks. They include punctured heart, damage to heart valves, blood clots, kidney problems, damage to the heart’s electrical system, narrowing of the veins, stroke, heart attack, and in rare cases death.

Wow, that is quite a list of “zero.” I was furious the physician had not disclosed the truth. Even if uncommon, I would not want to take a chance on those possible outcomes. I’ve had too many so-called rare events happen to me in the past.

So, I returned to the doctor who initially referred me to the specialist.

When he approached me in the room, he humorously commented that he heard the visit didn’t go well. 

“They must have talked,” I whispered to myself.

“No, it certainly didn’t, and I’ll explain what happened.”

The doctor patiently listened and, to my great surprise, proceeded to tell me he didn’t think I needed the procedure anyway!

“Are you kidding me,” I thought. “Why would you have sent me to the specialist if you didn’t think it was necessary!”

It astounded me that I could have undergone a very risky procedure and have suffered the consequences needlessly.

I was proud that I had not agreed to the procedure and that I had not signed the form. It certainly pays to go back to your doctor for another visit. Sometimes you might find the doctor has changed his or her mind about how important a procedure is.

My researching and speaking up might have prevented serious damage and perhaps even saved my life.

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