Assigning Blame: IVF and the Twin Situation
I read the Newsweek article on twins this week. Of course I did. I have twins due to fertility treatments. Amy Klein is usually a smart writer, and I’m always interested in the rehashing of the single-embryo-transfer meets non-insurance-coverage debate. It isn’t financially feasible to go with single embryo transfers when there is no insurance coverage, though it also isn’t financially feasible to pay the health costs for premature multiples. Because of the lack of insurance coverage, we are asked to make impossible choices with our medical team. Every cycle is literally a gamble, and you just hope that you put your money on the right roulette number.
Still, medical science has gotten better and single embryo transfers are now less risky than they were 10 years ago. That is the point of the article: that we need to look at the facts in front of us and make choices based on science now vs. using methods that made sense years ago but no longer apply.
The only thing that bothered me about the article were the quotes from doctors that implied the decision to transfer more than one embryo rests solely with the patient. It’s not that they absolve themselves fully from the situation, but each doctor has a quote that places the blame for negative medical decisions with the patient. People are hedging their bets. Parents are making “conscious decision that would cause health risks for their kids.”
Even the description of the article points a finger:
“Fertility doctors want to curtail multiple births, but that’s a tough sell for women desperate to be mothers.”
Fertility doctors are the good guys. Desperate, hysterical women are the culprit.
Which begs the question: who is in charge? I’m under the impression that doctors are in charge of my medical treatment. I can shop around to find a doctor willing to do my bidding, but ultimately, they are the ones making the decision about my care. Certainly, when things go well, they are perfectly willing to accept the accolades for their high SART scores. Those scores, for instance, are assigned to the work of doctors, not the choices of their patients.
But when things go wrong — because a twin pregnancy technically counts as “things going wrong” if the goal is one baby — all blame rests with the patient. It’s a situation we see repeated by the media and the general public and doctors alike.
Yes, Nadya Suleman’s doctor lost his medical license. But who was blamed for reckless behaviour in that situation? Was it the doctor or Suleman? I’d argue that it was Suleman. And yes, that is an extreme example, but this article reflect that ideology.
When it goes well, we thank the doctor. And when it goes poorly, we blame the woman.
It is important to be an informed patient so you know the questions to ask and the information to provide, but I don’t have a medical degree. When I go to a fertility clinic, I am expecting the doctor to lead me to a best course of treatment. If that treatment conflicts with what I thought would be the suggested course of treatment, I’d ask for an explanation. But beyond that, I am paying a doctor for his or her expertise. Not just to be a warm set of hands feeling my cervix.
I think we need to be careful about assigning blame in general. Humans are way too trigger happy when it comes to raining bullets of words down on individuals. How many times do political pundits blame President Obama for situations outside the reach of the presidency? How many times do we blame individual teachers for the failure of students, or parents for their offspring? We like to behave as if all situations pop up in a vacuum without any external factors affecting the outcome.
So I’m not recommending that we assign blame to the proper individual, but more that we stop assigning blame. Period. That we look at all the factors that go into making a decision and work on fixing individual pieces. In other words, make things work better vs. snarling fault.
We have a situation: IVF protocols are still leading to multiple births, and multiple births are not the best outcome for mothers or children. So how can we fix this without assigning blame? Which cog in this wheel isn’t engaging the other teeth in order to make things turn smoothly? What needs to change so we can get a better outcome?
That’s the article I’d like to read. Not ones that paint fertility doctors like clueless Little Red Riding Hoods skipping through the woods to Grandma’s house, just wanting to deliver the muffins. While those desperate women, those big bad wolves, lurk behind the trees, ready to jump out and demand transfers of multiple embryos.
23 comments
I am somebody who is vehement about the need for single embryo transfers of day 5 blasts (and I was furious with my RE when he froze my embryos in pairs after I had told him that I only wanted a single embryo transfer), but I always place the responsibility of the decision on the doctor, because I recognize that this is the person who can dispassionately look at the situation and sum up the odds. All an IVF patient wants at the point of their retrieval is a positive pregnancy test…they cannot see beyond that and think about the risks they will incur when the pregnancy moves to the 3rd trimester with multiples, and even I was the same, despite being a scientist and trained to think in terms of odds and risks. The onus SHOULD be on the doctor, and I really respect doctors who make the risks crystal clear to their patients, and strongly encourage them to do SETs.
Our RE was the one who suggested we transfer two embryos. He told us it would give us a success rate of 80-ish % vs 65-ish % with a single embryo transfer.
At the time, my husband and I were more afraid of a failed cycle (after spending nearly $30K, all out of pocket) than we were of conceiving twins, so we followed our RE’s recommendation. I might add that we did so despite my reservations related to my knowledge of the risks associated with twin pregnancy.
We now have twin boys who were born early (34 weeks) but healthy. At almost 3 years of age, they appear to be developmentally normal. Although I had a complicated pregnancy and delivery, the only postnatal care our twins needed was to “feed and grow”–no NICU care–so I guess they’d be considered a successful twin pregnancy.
I totally agree with your larger point, Mel. Yet I’d put myself in the category of desperate fertility patient who DIDN’T listen to her RE who recommended eSET. And that had absolutely nothing to do with money. I needed that cycle to work.
I did conceive twins, though one of them didn’t make it to first ultrasound. I know things could have gone very differently…but if I had to do it over again I’d make exactly the same choice.
I think it’s really a situation where the doctor has to explain the risks and benefits and have an actual discussion, not just a “this and this now sign here to say I said that”. Our first RE kind of zipped past the risks with twins, and I think that’s wrong. Would it have ultimately changed our choice (and her recommendation) to transfer two? Probably not. But I would have felt like it was a fully informed consent, more than “twins are usually ultimately fine”. (And we will never know if any of our son’s issues are related to being a twin or not – it hardly matters in our day to day life, but might someday very much matter to him when he makes reproductive choices.)
Meantime, my second RE – well, he tried very hard to force me into a double embryo transfer, despite my history of a complicated twin pregnancy with early delivery. What part of “I want a single embryo transfer, yes I understand it lowers my chance of success with this cycle, I don’t care, I really do not want twins again” wasn’t clear? He was trying to pad his clinic’s numbers – at the expense of my health and family. It *would* have been his fault, ethically, but ultimately mine for signing off on it, knowing that *for me* another twin pregnancy would have been dangerous.
I feel like there needs to be a third party (social worker maybe?) in the discussion to bridge the gap between the medical realities (risks, statistics, chances of success with 1 vs 2) with the financial, emotional, and social realities (how well a couple could cope with a multiple pregnancy and parenthood, how many times they can afford to cycle, etc). Doctors are experts, but that doesn’t make them truly able to understand the realities of their patients, and even the most well-versed scientifically-minded patient can fall into the trap of short-sighted “I just need THIS cycle to work, whatever it takes”.
That’s interesting, the framing in the medical community and media. The scientific literature I’m familiar with focuses on legislation and insurance coverage. In my field, doctors and patients are both simply pawns of market forces and the law.
Australia is virtually completely single embryo transfer protocol, and it works. We do have different insurance coverage here (government pays a rebate for all Australian citizens)
With everyone one of my transfers, except the first one, I was told to transfer two. Because of my history of miscarriage and failure, my REs were following medical practice with their recommendations. Grey and I did our research into SETs and knew the odds and risks. But at the Ed of the day, we sought guidance from our RE.
Of course Newsweek is assigning blame to patients. It’s easy to do as infertilty is still seen as a lifestyle consequence not a disease. The BS they aren’t addressing are the point Jay makes about embryo freezing, culturing and even the fact that there’s someone with 6+ yrs of medical training sitting in the same room with the patient. Don’t even get me started on how greedy insurance companies are for not covering these treatments. We need universal converge. That will lead to universal practices.
As the mom of IVF twins, after 4 IVFs to become pregnant with my first singleton, my doctor recommended putting back two, even though I was hesitant. We did, they both implanted, and I think he was more thrilled (I was scared!) than I was on the day we first saw both of them. I was fearful throughout my pregnancy that something would go horribly wrong (too much blog reading!) but I am now blessed with 3 healthy kids after fearing for so long that I would never have any. I think if you ask any parent of multiples, they wouldn’t trade them for the world. Is it risky? Yes. But I’d rather be the parent of three after having 14 embryos transferred than the parent of none after only having 5 embryos transferred. And yes, ultimately, the doctor makes the decisions.
Generally, with anything medical, I think it all revolves around who is willing to pay for what. We, as a society, need to get a stronger handle on that.
I love this so much: I think we need to be careful about assigning blame in general. Humans are way too trigger happy when it comes to raining bullets of words down on individuals. How many times do political pundits blame President Obama for situations outside the reach of the presidency? How many times do we blame individual teachers for the failure of students, or parents for their offspring? We like to behave as if all situations pop up in a vacuum without any external factors affecting the outcome.
Thank you for that. I needed to read it.
(I’m thinking insurance companies, here, not doctors or patients. But I realize that’s slightly to the left of the topic at hand.)
What? But blaming everyone else is my favorite pastime! (Not really – as I used to say, It would appear that I’m in charge of the universe, given the number of people who blame me for everything.)
I have gone through 8 or 9 transfers (I’ve lost count) with only 3 live children to show for it. However, once I get pregnant with a ‘good’ one, I totally rock pregnancy. I carried my boys to 38 weeks without a trace of complications. The spaghetti method (just keep throwing embryos at that uterus until something sticks) may not be for everyone, but for those of us with mf infertility that creates shitty embryos, it really is the best option. And my treatments were covered by insurance. Now, if my insurance had covered PGD, that would be a different story. I would have been fine with transferring one genetically good embryo at a time. Ultimately, it was my choice to transfer 2 embryos at a time.
I think transferring two or even three embryos is a gray area. I think most reasonable doctors do have a line they won’t cross–four or five embryos transferred at once? I suppose it depends entirely on the patient’s situation. I think you’d be hard pressed to find an RE that would agree to transfer say 8 embryos at a time, regardless of how the patient felt.
For me personally it was a financial decision. I couldn’t afford to keep doing IVFs and FETs because my insurance company refused to pay for any of it. I think if insurance covered IVF they could pay for only eSETs. They’d cut down on cost associated with multiples while the patient had the financial burden lifted. Win win. To me, this is sort of like insurance companies that used to refuse to cover birth control–babies are far more costly than birth control.
Most doctors consider it unethical to selectively reduce twins.
So if this is a situation that is not even dangerous enough to fix, even if you wanted to, then how dangerous is it really?
I chose a Shared Risk Plan with my doctor and part of the contingency was transferring 2 embryos. I didn’t really want to, but felt that I had to. I was prepared for the chance of twins and did feel like I understood the complications, but I was not prepared for seeing 4 heartbeats at my first ultrasound despite transferring 2 embryos. I’m sure it was in the fine print I signed off on, but I really did not even consider the possibility.
I did go through selective reduction and also had a micropreemie, so I feel like I understand many different sides of the equation. I think the bottom line is that it is financial for the doctors also. And they have pressure to keep their SART data up. And that should not be a part of the equation. I agree with many above that the onus is on the doctors.
Transferring multiple embryos is the right decision for some people, but eSET should be the standard. I believe if insurance covered IVF as a standard, that it would become the standard in the U.S.
I have twins that were conceived via an IUI injectable cycle, so obviously the transfer portion does not apply to me, however, I did have a final ultrasound during that cycle that clearly showed 4 mature follicles. My doctor, who knew that we had zero interest in conceiving multiples (we had done the same IUI for our singleton first pregnancy also) said “ok, we need to have the twin talk now”. She told me I had a 20-25% chance of twins if we proceeded with the IUI. My husband and I decided to proceed, thinking it was US, Mr and Mrs Infertile, and that chances were slim it would even work. Bam. Then when I had my first ultrasound with the Maternal Fetal Medicine doc, he said “Did they tell you it would be at least a 30% chance of twins?” And then I was mad at the doctor. She should have said 30%! That sounds much more “REAL” to me. Would it have mattered though??? I have NO idea. We just wanted to get pregnant and were blinded by that. It wasn’t her fault….. it was ours for agreeing with it.
And my twin pregnancy was fine, BTW, 34.5 weeks, 9 days in NICU. It’s a very interesting debate though.
Interesting, I haven’t read the article.
@Patient Subfertility I don’t know the literature on that issue, but I do know SR carries risks of its own, even to the surviving fetus(es). I’d guess the issue isn’t “are twin pregnancies more dangerous than singleton pregnancies” (clearly the answer is yes) but “is a pregnancy that started as a twin pregnancy and got reduced to a singleton pregnancy safer than an undisturbed twin pregnancy.” I’m not sure we know the answer to that one?
It’s worth noting somewhere (does the article) that — though this is hard to track, because IUI, etc., are much less monitored than IVF — it’s believed a majority of ART-related multiples originate not from IVF but from less invasive (and expensive, and controllable) treatments.
As a high FSHer navigating all this stuff some 5-10 years ago, I consistently went against medical advice by having 2 embryos transferred, and that was because my RE consistently thought I should put back MORE (the cycles I had more available). But I was clear then (and am equally so now), there were outcomes I wanted even less than I wanted the outcome “never got pregnant,” and those very-unwanted outcomes (pre- and perinatal loss high on the list) were noticeably more likely with twin pregnancies. (For the record, I transferred 13 embryos across 7 cycles including 2 FETs, and achieved exactly 1 pregnancy, a singleton from 2 transferred, which, happily, led to the birth of a healthy-full term infant).
I don’t know that I’m comfortable giving up blame, and I’d assign it to the REs, but even if we don’t want to assign blame I’d say it’s through the REs that any needed change must be effected, so it’s on their practices that attention should be focused.
And yes, to insurance coverage and SETs.
I’ve found that my local clinics (southeastern USA) have really low eSET rates – 0%-17% (based on patients age ranges). So, I don’t think it’s really catching on here! It is interesting if you take a look at rates (from 2012, CDC stats) for the state of Mass, where IVF insurance coverage is required by law for many employers, the average eSET for ages >35 is 24.47% and for ages 35-37 is 9.56%. I wish there were stats that separated out patients by payment type and compared rates. I would assume that patients with insurance coverage for IVF may be more likely to do eSET than patients who pay out of pocket.
I haven’t had my first cycle yet (next year, currently saving, no insurance coverage) and I really waffle about the issue. If I knew that I could easily afford 2-3 cycles, I would probably just jump straight on the eSET train. But knowing we have limited chances makes that choice harder.
I know far more women who have had twins and triplets (or more) from clomid or IUIs than with IVF. What is it with IVF that makes people so judgey (for lack of a better word)? Ob’s hand out clomid like candy to women, and the women take it (and do it without monitoring!)
I’m probably the wrong person to be in this conversation now, as I am days away from “throwing all the spaghetti at my uterus” one last time. These final two cycles of FET are costing roughy the same amount as a fresh cycle. I cannot afford to put only one back, and since I put two back last time and none stuck, I’m throwing my eggs into one “basket” soon.
We didn’t do IVF, but rather injects/IUI (which comes with the sister issue of, “How many follicles are too many?”) but I never thought about anyone placing the blame for my twins with me or my RE… my RE and I talked about the risks, taking my history into account, and made a mutual decision that we were comfortable with. I agree that there is too much discussion about blame, especially in the media.
I also think people in general have wildly varying views of the doctor/patient relationship though. Some women think their doctor is in charge. Others think they are in charge of their doctors. I view it as a partnership, where I am ultimately in charge as I am paying for a service and the decisions from said service will affect my health and future.
You are so spot on about making impossible medical choices with our medical team.
When we were deciding how many embryos (made with my 41-year-old eggs) to put back, we followed the advice/experience of our RE and the ASRM guidelines http://www.sart.org/uploadedFiles/ASRM_Content/News_and_Publications/Practice_Guidelines/Guidelines_and_Minimum_Standards/Guidelines_on_number_of_embryos%281%29.pdf . We decided to put back all 5 of our embryos that made it to Day 3, and are currently pregnant with a singleton. Had we tried to get to Day 5, maybe we would have had one left to transfer and maybe, if we were very lucky, one to freeze. Would either of those have been the 1 in 5 that was normal, or would we be stimming again right now trying to get a few more of my now 41.5 yo eggs? Transferring 5 Day 3’s we knew there was a chance that we could have ended up with twins, and I was nervous about that at times during the wait for the first u/s, but the more likely outcome was that we would end up with zero. If I was in my 20’s or 30’s, I would have been all for SET, but for women in their early 40’s it doesn’t seem like a very good way to gamble with their remaining eggs.
I want to thank R from above who posted the ASRM guidelines for the number of embryos to transfer. I am going through exactly the same thing: trying to decide how many embryos to transfer. I was in shock when my RE initially suggested transferring four day-2 embryos. Our recent conversation was another shocker; he wants to transfer six day-2 embryos. I know I am 40 and I have DOR and high FSH so my egg quality may be compromised, and the chances of even having one normal embryo are slim. But the number six is still very shocking. So I am thankful for the guidelines and I am still not going to transfer more than four when it comes time. But in this instance, it shows that it is my RE who is being comfortable with being aggressive with the transfer while I am the one who is hesitant. I want one healthy singleton pregnancy. But I am not blaming my doctor. He knows what he’s doing. But it’s a decision that the patient has to ultimately make.
Really good point. It should be a shared decision with the doctor in expert/advisory role and willing to take on the responsibility for that. I get that patients have their share, too, but the language needs to reflect a bit more balance.