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I gave “informed” medical consent. Here’s what happened…

by Kym Middleton
29 August 2017
HEALTH AND MEDICINE
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What are the everyday implications of “informed consent” in medicine? Kym Middleton shares a personal story on granting and regretting it.

 

I have had two body parts removed that never should have been.
 
This would be one hell of a story if I could tell you I woke up in an ice bath with crude stitching down my torso. But it wasn’t so horrific. The worst part of this cautionary tale is how common it is. It’s not that I was operated on without consent. It’s that I did consent – in a legal and “informed” way.
 
I agreed to have a healthy appendix removed and undergo a wisdom tooth extraction that almost caused facial distorting nerve damage. Both procedures were completely unnecessary and one was dangerous.
 
You’d be right to think it isn’t all that serious to remove such banal, useless body parts evolution left behind long ago. That was certainly the view of the medical professionals who recommended they be taken out. As someone who ranks low on the scale of medically ignorant to wise, I trusted their expert advice. But I wish I hadn’t. It was full of holes.

The appendix

The function of the appendix wasn’t known when mine was removed. Consensus back then was it’s a remnant from our grass eating ancestors and doesn’t do anything anymore. Five years later US researchers discovered it releases good bacteria into the gut after a serious case of gastro, dysentery or cholera. Turns out this non-vital organ is capable of saving your life.
 
New developments in physiological knowledge usually amaze us but this one left me feeling rather peeved. How could the medical profession be so arrogant it would declare something redundant if it couldn’t see its use? So firm was this arrogance, a surgeon cut out my appendix even when he saw it was healthy because I’d signed a form giving consent for him to operate as he saw fit.
 
I went to emergency with disabling abdominal pain. After two days in the waiting room, my ailment and I reached the top of the triage (the most critical patient who came in during that period had been stabbed – needless to say their severe situation was utterly incomparable to this). The treating doctor said, ‘We can’t see anything wrong in the scans but your appendix might be upside-down or inflamed or you might have two. We’ll only know if we look inside.’
 
Who knew you can have two appendixes and a CAT scan wouldn’t necessarily reveal it? I’d love to know how many times surgeons have opened people up and found a surprise double organ act. Surgeons are cutting people open based on its possibility so it better be probable.
 
This did not cross my mind then. I trusted the doctors. While we’re taught to approach Dr Google with caution, smartphones didn’t exist yet so there wasn’t readily available internet access for some on the spot research. I was in far too much pain anyway. The offer was operate now or go home. I signed the official consent form.
 
The surgeon explained they’d perform a laparoscopy. A small incision is made in the abdomen so a camera can be inserted and the doctors can see what’s going on and make a diagnosis.
 
I woke up with a few holes in my torso. When the surgeon came to explain what happened, I asked why it hurt so much.
 
‘Your appendix is not the source of pain. You probably have an infection and need antibiotics. Another specialist will have to assess you. But you were booked in for an appendix removal so we took it out while we there.’
 
Did I have two? Was it inflamed? Was it upside-down? ‘No, it was healthy. But now you can’t get appendicitis.’
 
True. But was that what I consented to? Having a healthy organ removed?
 
Well, yes. But I didn’t realise that course of action was an option. I misunderstood and believed the surgeons would take out problem organs only. I didn’t understand what was going on medically. Neither did the surgeons. They just did what they do – cut stuff out. Ironically, the appendix might even help combat infections. But no one suspected that then. So I gave “informed consent” for it to go.
 
While the surgery was minor, it raises big ethical questions on what informed medical consent is. If doctors don’t know what’s happening, how do they educate a patient to become informed? Do we need to get expensive and time consuming second opinions in the midst of medical emergencies? Exactly how much knowledge must we obtain to give genuinely informed medical consent?

The tooth

Stupidly, this experience didn’t lead me to be more sceptical about a dentist’s advice to remove a wisdom tooth. I should have sought at least one more opinion before consenting to the extraction but I couldn’t have afforded that.  
 
It turned out the dentist couldn’t read the x-ray. She didn’t see the root of the tooth was so close to a nerve it was, according the maxi facial surgeon I saw afterward, “highly likely” to cause permanent, facial disfiguring nerve damage.
 
The dentist truly struggled to pull the tooth out. Its root was like a hook, having grown at a 45 degree angle from the crown. An untrained eye could spot it in the x-ray but the dentist assured me it was an easy procedure. It wasn’t. She considered calling an ambulance.
 
Once out in several pieces, with a hole torn from mouth to my sinus, the dentist asked if she could keep the tooth as a “humbling” memento. If only she wanted to hang on to the bill instead.
 
It’s possible the tooth and appendix removals were less about the patient and more about Medicare payments. I doubt it though – I suspect the dentist and surgeon really thought they were doing the right thing. They simply didn’t know enough.
 
But I wouldn’t have consented to either procedure if I were more informed. If I at least went in acknowledging doctors are experts but also human and don’t know everything themselves, maybe I’d still have that sack of bacteria and hooked wisdom tooth. Maybe they’d be causing health issues now. One thing is for sure. If I was going through a more serious medical emergency, I’d probably consent to anything suggested by a doctor.
 
Kym Middleton is a journalist, producer and head of editorial and events at The Ethics Centre. She is hosting The Ethics of Consent Wednesday, 30 August. Tickets here.

 

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