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

The cost of a suspected ectopic pregnancy

You can’t put a price or a value on having both your fallopian tubes intact.  In fact I imagine that anyone who has lost one or two of their fallopian tubes wouldn’t be able to put a price on how much they are willing to pay to have them whole and functioning again.  Without a doubt.  And so when the doctor told me that there is a risk that I had an ectopic pregnancy and a fallopian tube could rupture at any point, you simply don’t think about the $$$ money.;

After I found out that my pregnancy was non-viable, the whole process of determining whether or not I had an ectopic pregnancy was absolutely soul destroying and mentally exhausting.  I tried to research what the likelihood was of having an ectopic pregnancy was with IVF.  I tracked my hCG levels to try and determine what my odds were.  I even joined several online groups to talk to other women who had experienced what I was going through.  (I have probably mentioned this before, I dislike online forums because you get exposed to some real stupid, dumb, insensitive and simply irritating people.  And you just can’t get rid of them.)  All of this led me to some tiny hope that I was going to be one of those women who was going to beat the odds and carry a pregnancy despite the slow doubling hCG levels.

The doctors cared a lot about my wellbeing and were concerned of an ectopic.  I mostly followed their recommendations:  We both dropped everything to come in to the clinic for blood tests, consults and ultrasounds.  What they didn’t tell us was how much it is all going to cost.  Like I said, when there is a risk of losing a body part or even worse, your life, the money doesn’t matter.  And now I can finally say how much it all cost.

I am not complaining about the cost because we are lucky, we have amazing insurance and we can afford to pay the bills.  What I would like to know is what about those people whose insurance wouldn’t cover the costs?  It’s just another slap in the face if you have saved up or taken on debt to pay for IVF.  Of course, most insurance companies cover the cost for maternity healthcare, but the treatment of an ectopic or any other type of pregnancy loss doesn’t come for free.  Remember I told you about the woman who couldn’t afford to have an ‘abortion’ to end her life threatening pregnancy at her hospital because of a CRAPPY law? (You can read about it here).

When you save up and take on debt for IVF, no one tells you to save a little bit extra in case things go slightly wrong.  I have discovered, however, that most hospitals and healthcare providers will negotiate the costs if you can’t afford this type of care.  There are also some charities out there that can help.  I also believe that friends and family will be there too to help out.  We have helped out some friends in the past when they got caught out with unexpected medical bills.  It’s not only a difficult emotionally, it can quite quickly become difficult financially.

So how much did it cost?  Luckily for us, not much.  The total cost was $3,107 of which our insurance covered most of it, and so cost us $140.   I have updated my ‘Cost Lowdown’ page with the breakdown of where the biggest costs lie here. But this has made me think about putting aside more savings specifically for unexpected healthcare costs.

My appreciation for the UK National Health Service has simply sky rocketed.

The saddest thing

The saddest thing about today is that we feel a relief with our miscarriage.  It’s a bit of an oxymoron really.  I am sure it is going to hit me soon, but for now I am feeling a huge weight of my shoulder, I feel 5 times lighter.

I had my blood drawn this morning by a super nice nurse, and I returned to my clinic this afternoon for the results and ultrasound.  It didn’t start off great.  My doctor said my hCG had risen again to 2600 from 1300 4 days ago.  Yikes.  I told her about my bleeding the past two days and how at 2AM I was up passing clots the size of golf balls and had been bleeding for the rest of today.

The two doctors spent an age checking every inch of my tubes, ovaries and uterus.  The ‘junior’ doctor kept pointing to something and saying that she thought it was ectopic, they even switched on the colour flow on the ultrasound to see my blood pumping around, looking for the signs of the tell-tale ‘ectopic donut’ where blood flows around the pregnancy.  But my doctor said no, that was definitely not ectopic, and she has seen lots of ectopics in her career (she this out loud!!).  Especially now my hCG levels are much higher they really would expect to see something by now.  I am very appreciative of the amount of time they took to look,  particularly in comparison to the on-call doctor and other senior doctor at the weekend who spent 1/8 of the time hunting.  My doctor said with an ectopic pregnancy I wouldn’t get bleeding with such large clots so she thinks it is very unlikely I am ectopic.  I am SO GLAD I listened to my gut instinct and said NO to taking the methotrexate.

So the conclusion?  It takes a few days for hCG levels to drop after a miscarriage begins therefore I will return on Monday next week for another blood test to check they are dropping and this is in fact a miscarriage.  I have got a sick note for the rest of the week off work, so now for a bit of chilling out and eating lots of chocolate (seriously I have eaten a lot of chocolate already today).

I’m not completely in the clear just yet, we need to see my hCG levels drop and I need to pass whatever it is that has been growing in me causing my hCG levels to rise (prob. the placenta).  The ‘junior’ doctor is on call this weekend, she said ‘don’t call me!!!’  she really meant “I hope you don’t need to call me!!!”…bless, she is lovely in her very quiet way.

My doctor reckons 6-8 weeks before I get a normal period returning, then we wait a natural cycle, start the Birth Control Pills and then can start a new round of IVF again or do a Frozen Embryo Transfer (FET) – whatever we want 🙂  This will put us at Christmas time :-s

Miscarriage is a terrible, sad, painful and hurtful experience.  At 2AM last night when the big clots were passing I felt lonely and slightly terrified, I tried to sleep through the waves of pain but it was impossible, I finally fell asleep again at 5.30AM.  I don’t know how long the physical pain will last, but I know that the psychological pain will last a whole lot longer.

For anyone who is reading this and currently experiencing a miscarriage right now, my heart truly breaks with you too – may be you have found this web page already, but I thought it was very useful: Coping with Miscarriage  http://carikay11.hubpages.com/hub/miscarriagerecovery .  Knowing that miscarriage is so common (1 in 4 pregnancies end in miscarriage) makes this even harder, because I think about how many of my friends and family have silently been affected.  I am so sorry you had to go through this – because this truly sucks X