What-ifs? And Bias in Diagnosing Ectopic Pregnancy

Yesterday Chris and I were talking about the ‘What-ifs’ of the future.  We tend to find ourselves having these kind of conversations regularly.  It’s difficult to plan anything when dealing with infertility.  Not only because of things we can’t do ‘when we are pregnant…’ but, also what to do with our savings.  We want to buy a house together, but it’s difficult to have these conversations with little knowledge of where our infertility journey is going to take us.  For example, if we bought a house now, we might not be able to keep our options open to afford egg donation, surrogacy or adoption.  So we hold off on making these big decisions for now.

We talked about what we would do if I am pregnant again and we face a similar scenario that we faced after our first round of IVF – slow rising hCG, nothing seen on the ultrasound (Pregnancy of Unknown Location), suspected ectopic pregnancy.  Chris said that at least we would know what to expect!  This is very true.  But, I think I might do things differently.  There is a small part of me that feels guilty for giving in and taking the methotrexate treatment.  Part of me wonders – what if?  What if I hadn’t taken the treatment.  Would I have just prolonged the inevitable?  Or would I be into my second trimester by now? I actually feel sick writing those words!

We made the decision to take the methotrexate treatment after 5 doctors from our clinic had suggested we should do that.  Our doctor had spent 20 minutes meticulously looking for an ectopic pregnancy on the ultrasound, said she couldn’t see anything that looked like an ectopic, and concluded that I must have miscarried already (I had started bleeding two days before) and then effectively released me from monitoring.  The next day she phoned to say she changed her mind.  What made her change her mind?  Did something not fall into place?  Did another doctor tell her she was leaving herself exposed to liability for misdiagnosis?  Did the other 4 doctors tell her she had made the wrong call?  How did she make her decision?  Did she review the evidence afterwards in a more objective manner?

It got me thinking – FIVE doctors told me I should take the methotrexate to terminate the {ectopic} pregnancy.  That should be enough to qualify for my ‘second opinion’.  But I never really thought about it until now, that organisational bias may have come into effect here.  All these 5 doctors work together every day.  They all make decisions on their own every day, but sometimes they ask each other’s opinion when making a decision or a diagnosis.  Not only do doctors face their own personal biases but they face bias that becomes systemic in their clinical practices.

I am not a stranger to these biases – I teach methods and techniques to the military to help them overcome all kinds of biases when they make decisions.

There are many opportunities for a doctor to become biased in their own decision making or diagnosis, here are some of them:

Confirmation bias:  The tendency to over emphasise data that supports an existing hypothesis rather than data that refutes that hypothesis.

Overconfidence Bias: Over-reliance on the opinions of the expert that can before (the attending or consult etc)

Availability Heuristic: this patient has whatever your last patient who looked like this has or whatever is commonly discussed

Premature closure/anchoring: the tendency to decide that the patient’s current problem is related to the first thing we diagnose rather than more than one issue.

Commission Bias: the tendency to need to do something rather than stand there.

Hassle Bias: the tendency to take course of action that is easiest or exposes the physician to the least amount of grief

Regret Bias: the tendency to take course of action due to guilt from a missed diagnosis

Commission Bias: the tendency toward action rather than inaction.  An error arises when there is an appropriate committal to a particular course of action.  It is more likely to occur in someone who is over-confidence, and reflects an urge to ‘do something’.  It satisfies the obligation of beneficience in that harm can only be prevented by actively intervening.  Commission bias may be augmented by team pressures or by the patient.

One or more of these biases may have played a part in my doctor’s decision making process for my diagnosis*.

In addition to the individual and organizational biases doctors face, there are also the established guidelines that doctors follow.  Every clinic will develop its own guidelines for diagnosis and treatment of ectopic pregnancy, generally based off national best practice and research – my clinic is within a medical school so I like to think they are up to date on their practices.  Guidelines will vary from clinic to clinic because they have the freedom to do so.  However, in the UK, the NHS is very transparent about many of these national guidelines by publishing them on the internet, and so I know that if I was in the UK I probably would have been treated very differently to how I was treated by my clinic.  In the UK I would have been sent home and told to keep taking home pregnancy tests until the date for next ultrasound scan or until I received a negative pregnancy test or if my situation changed to go to the hospital if I had developed any signs or symptoms of ectopic pregnancy.

I can’t help but wonder “what if”….I know the chances were slim that my pregnancy was going to be successful – the statistics told me that.  But I have read about a very small number of cases of women having slow rising hCG level after IVF, with nothing seen on the ultrasound up to 9 weeks and delivering to full term healthy babies.  There is a facebook group called “Misdiagnosed Ectopic Pregnancy Given Methotrexate”, and I have learned that research in this area is lacking, particularly for women going through IVF and women with retroverted/tipped uteruses.

I don’t regret my decision to listen to the advice of 5 doctors to take the methotrexate.  But it does make me think about how difficult a doctor’s job is to make that decision, the biases they face on a daily basis when making those diagnosis decisions, and the overall lack of research in this area.  I hope I never have to face this scenario ever again.

If you have found my blog because you are facing this situation, please feel free to contact me: dani@thegreatpuddingclubhunt.com because I wouldn’t wish this upon my worst enemy and will try to offer you a hand through it.

 

*If you would like to know more about bias in clinical decision making there is an excellent website that provides more information: http://www.improvediagnosis.org/?ClinicalReasoning

12 thoughts on “What-ifs? And Bias in Diagnosing Ectopic Pregnancy”

  1. Wifey says:
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    It’s so hard not to second guess yourself. I have so many “what ifs”, but I try to tell myself that I made the right decision because I listened to my doctors and did what felt right in the moment. One of my biggest what ifs is about having a D&C after our first loss. I think a lot of my trouble since then is as a result of having that procedure done. Hindsight is 20/20, but we don’t have that advantage at the time the decision has to be made. It’s so hard, but I guess we just have to trust our doctors to not be too biased and ourselves to make the right decisions.

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  2. Recurrently Unlucky says:
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    My experience with ectopic pregnancy was somewhat different than yours, but, I imagine, equally hard. First, my beta was quite high at only 4 weeks, too high for methoxatrate, I was told (the limit in my clinic is 3000, I got 10000 in my first beta test), and I had gotten pregnant naturally. The scan wouldn’t show anything either, so for two weeks I had scans and beta draws every 2-3 days, which felt like slow torture. Each doctor would give me a different opinion: it’s too early, it’s a miscarriage, it’s ectopic… I was so confused and didn’t know whether to have faith or give up. The bleeding didn’t help either. When it stopped, I’d feel up with hope, only to get full period-like bleeding with clots the next day. But after 2 weeks of scans they finally got visual confirmation and that made me feel better. I think I wouldn’t have accepted surgery otherwise, unless my tube had actually ruptured, so I understand your doubts. After surgery, the doctor planted some nasty seeds on my mind that took me to guilt and shame (I’ve just blogged about it, as today is my surgery ‘anniversary’, so to say). I’m so sorry you’ve been through this, it truly is horrible. I hope you can find peace and silence the what ifs. Best of luck on your next IVF. Hugs.

    Liked by 1 person

    • thegreatpuddingclubhunt says:
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      Thank you for sharing your experience here, I really appreciate it, especially after two years, it must be difficult to think about it. It’s really interesting to hear that your hCG levels were very high and they still couldn’t see anything on the ultrasound – from what I have been reading this situation is a rarity, however, the number of cases are so small because the research is lacking.

      I equally think of the ‘what-if’ I didn’t take the treatment and ended up with a ruptured tube in the ER with Chris worrying I was going to die. It was this ‘what if’ as to why I took the treatment. I also read so many stories of women who didn’t know they were pregnant until they had pains in ER and it was too late. At first the decision was mine to take, then the decision to take the treatment left my hands as the hCG levels crept up and I realised that I was ultimately being selfish in my desire to just be pregnant. I wrote down the pros and cons. I debated with Chris for hours. Emotions were upside down. I am not sure anyone can ever prepare themselves for this situation, and every situation is totally unique. Truly I am afraid of it happening again. Which is silly because that would be a rare series of events! I know I have blabbed on, but you reminded me of an important point I missed out in my post – doctors are good people and their decisions are with the purpose to keep us safe (and alive!).

      Liked by 1 person

  3. My Perfect Breakdown says:
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    The what ifs are the worst! Wondering, contemplating and questioning can drive the best of us crazy sometimes! But it sounds like you have a really good understanding of the biases in decision making and how that might influence your future medical treatment options. I for one am hoping you are never in that same situation again, and that you can use your knowledge to better question your doctor’s with future care.

    Liked by 1 person

  5. Anamarie says:
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    Of course you did the best with the information you had… Not only what the doctors gave you, but also (wisely) what you sought for yourself. There’s no denying you’re one smart, strong woman, but even that does little to keep the second guessing at bay. I hope that you never have to go through anything like that again. I’m also proud for you that despite how difficult it all was and is, you’re still fighting. That speaks volumes about who you are!

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  6. ashleykyleanderson says:
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    This is tough. I have also asked myself many “what-ifs” over the years regarding health issues. It’s hard because we really place doctors on a pedestal, and we expect that they know best, but the truth is that they don’t always. Anyone who has studied history knows that doctors have had ridiculous beliefs in the past and have practiced appalling treatment methods at various times. We can shake our heads at that now, but at the time, it was what they knew. They are really just people with certain education. They aren’t gods. They crammed for exams and forget important information just like the rest of us. (Honestly, I shudder when I think of the future patients of a few Facebook friends who’ve become doctors.)

    I’ve also dealt with the repercussions of misdiagnosis (my pediatrician diagnosed me with a sinus infection when I really had a ruptured appendix– I think this was a big part of what ruined my fertility). It sucks to know that they can’t always fix or understand things, but that’s why it’s best to do research yourself and, if possible, seek second opinions. All of that you did. But, those what-ifs… they’ll come back to you from time to time. Just don’t let it get to the point where you’re beating yourself up over it. You also have to remember that you were under significant duress during that whole ordeal, and I think you handled it pretty damn well. You deserve credit for that. xx

    Liked by 1 person

    • thegreatpuddingclubhunt says:
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      You make a very good argument – leeches to cure a fever being case in point! I know that doctors mostly have good intentions to heart, but they are not superhuman and to err is human.

      I have no regrets as to my decision, it was the most logical and I even followed my gut feeling at one point too – damn logic won in the end 🙂 The thought of potential biases in doctors came to me with the what if – as usual, I’m turning it into a problem I want to solve, I just know deep down I will never be able to solve it!!!!

      I really do not know many people who have had a positive diagnosis experience with burst appendixes….(my brother being one and recently a colleague)…this makes me sad that it might have been a contributing factor to your IF 😦

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