Uninformed Consent

Funny how we can think we’ve figured out how to navigate the medical system, only to see just how wrong we are.

Quite a few years back I was diagnosed with a macular pucker. After two years of watching things, the retina guy told me it seemed stable but to come back if it got worse. Well, to tell the truth, after a while I forgot about it, but then I changed optometrists and the new one was insistent that I 1) figure out the cause of my double vision, and 2) follow up with a retina specialist because straight lines should not look wavy and it might be time to do something about this problem.

Back to the retina specialist I went, and when I asked if a macular pucker could be related to the RA, he said no. Most emphatically no. And when I questioned that, the man yelled at me. They do not know what causes it, but it is definitely not related to RA. At this point, I should have walked away. We all know this, right? Why didn’t I do it? Never mind the yelling (which was totally uncalled for). If they don’t know what causes it, then it could be related to RA. And I have since learned that since inflammation is implicated in this condition, it is related to the RA – which means the guy didn’t know what he was talking about.

Anyhow, he referred me to a surgeon and I thought I asked all the pertinent questions. We scheduled it early in the year so that all related expenses would fall within the same calendar year (hopefully save a little money). Then after the surgery, at one of the follow-ups, I expressed frustration that although all the wavy fence-posts had looked straight for a month or so after surgery, they were back to being wavy again. Would you believe that the doctor stared straight at me and told me that was never the point of the surgery?!

Apparently I assumed that if the problem was straight things looking wavy, the fix was to make them look straight again. So now I know that my definition of the problem might be very different than the doctor’s, and that I have to ask specifically what the goal of the surgery (or other treatment) is – because the doctor might have different goals than I do. Shouldn’t the informed consent have said what the goal of the procedure was?

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It really sucks to have glasses that are less than a year old only correct your vision to 20/200. Sadly, one possible complication of vitrectomy (surgery for macular pucker) is rapid growth of a cataract. Before surgery, ask your doctor about his complication rates – not average rates, but his/her personal outcomes. I know we’re supposed to ask these things, but I was so fed up with everything that I just wanted to get it over with. Bad choice.

At my three-day follow-up, they could see a cataract growing. At the three-week f/u, it was worse. At my three-month follow-up, the retina specialist told me to go back to my optometrist and get a referral for evaluation of my cataract.

This was not really what I signed up for, and it actually involved finding a new new eye doctor so that everyone would be in the same city instead of having my doctors forty miles apart and not have a clue who each other are. This eye doctor said, 1) the cataract wasn’t that bad, 2) I also had a small cataract in the other eye, 3) she was more concerned with my double vision.

I’ve had double vision for fifteen year and my old eye doctor never cared about the cause. Suddenly everyone thinks it’s a cause for concern. Instead of taking care of the cataract, I was sent for MRI and other tests, the result of which is that I: 1) do not have MS, 2) do not have Graves, 3) have unexplained double vision. All that time and money, but no answers.

Three weeks later I was back to my optometrist, and when I mentioned that my vision seems to be getting worse every day, she responded that the inflammation in my eye was a bit concerning and so sent me to a new retina specialist. Note: insurance companies don’t want to pay for two different retina docs in the same calendar year, so this was 100% out of pocket, which really sucks after you’ve met your family out-of-pocket max for the year. Ask questions before making this appointment. Maybe go back to the first guy, or find a way to make the insurance company pony up. Or if this has drug out ten months, wait another month or two so you’re in a new calendar year and the insurance company won’t squawk.

Eventually – more than a year after my vitrectomy, I finally got my referral to the cataract place. This was good since I’d given up driving due to being unable to see.

At first I was excited. They emailed me all sorts of information including short videos explaining the procedure and my options. They even encouraged me to ask questions. You know I did! I emailed my questions and their nice assistant responded that those were really good questions but she couldn’t answer them so she would forward them to the doctor, who would answer them at my appointment.

So.

After watching all their infomercials, I decided that my first choice would be a multi-focal lens. If that wasn’t an option, I wanted my vision corrected for distance vision. And at the appointment, they had me watch a bunch of new videos with info to help me choose what type of anesthesia to use.

Then the doctor finally breezed into the room. Given my vitrectomy, I’m not a candidate for a multi-focal lens. Which really stinks – and makes me wonder why I had to watch all those videos and think about choices if I don’t have any. I’m not supposed to waste their time, but they can waste mine?

And she doesn’t like the anesthesia I chose and wants to use the other one. Again, why bother to tell me there was a choice if there isn’t?

And then she said that some people will have one eye corrected for near vision and the other corrected for distance, and that way use mono-focal lenses, but not need glasses. That could work, but I want to see how they do with one eye before they go messing with the other one (cuz the other eye wasn’t really bothering me and I doubted insurance would cover that one).

When I said we’re only doing one eye, she said that they don’t like to make the eyes more than two diopters apart, so wouldn’t be able to correct my distance vision completely. First, that’s malarkey since she had just been offering to correct one eye for distance and one for up close vision. Second, that’s not a problem. I’m okay with leaving one eye at -3 while she corrects this one to -1; at whatever point I have the other eye fixed, the two eyes would be close and I’d be able to see better than I have in decades.

Just like that, she was ready to breeze back out the door but asked if I had any questions. Well, yes, as a matter of fact, all those questions that I emailed – I’d like answers to those. She had never seen them. So I don’t know if she never reads her email, or if they never sent them to her like they said they would, but she seemed pretty annoyed to have to answer questions, and didn’t actually answer all of them.

Did I learn anything from the first eye surgery? Apparently not. I was so tired and worn down by the months of tests and jumping through hoops that I just wanted to get things over with.

They’d had a cancellation and were able to fit me in the very next week. In that intervening week, I was very very tempted to cancel the surgery and get a second opinion elsewhere. Oh, how I wish I had.

But I had the surgery anyway, just to get things over with and finally be able to see. And I was stunned the next day to discover that they had corrected my eye for reading, not for distance.

Before surgery, I was told no straining after surgery. After surgery, I was informed that this meant nothing over 15 pounds for five weeks. Why the heck wasn’t this part of the informed consent?

So I’m making a list of things I need spelled out in plain English if I or my loved ones ever have the misfortune to need medical treatment ever again.

• How does the doctor define the problem? Why is this a problem? (ie, I thought wavy lines were a problem, turns out the doctor sees the problem as loss of central vision and doesn’t care about wavy lines)
• What is the treatment?
• Are there other options?
• What is the purpose of treatment?
• What happens if we don’t do anything?
• What is the expected outcome of treatment?
• What is that doctor’s personal complication record?
• What restrictions are there on activities and how long will those restrictions be in force?
• Get a second opinion!

Feel free to add to my list! No more uninformed consent!