IVF: Risks, Benefits and Alternatives

June 16, 2011Carole 2 Comments »

Patients ask me lots of questions via “contact me” from this blog or via an infertility forum that I participate in called GenderDreaming. Lately, I have been getting a lot of questions from patients about should they choose Treatment Option A or Treatment Option B. I find answering these questions troubling for several reasons.

First, I have to decline to answer  treatment decision questions  because I am not a physician and answering some of those questions falls perilously close to practicing medicine without a license, so I —much to their annoyance–defer these questions back to their doctor. Hopefully, my readers will have gleaned enough information about the treatment from this blog or other sources to ask well-informed questions of their doctor in order to better understand their options and thus make better decisions for themselves.  Second, I am keenly aware that they, and not I, will be living with the consequences, good or bad, of their decision and I think it would be extremely arrogant of me to tell them what to do. I do think it is fair and ethical for me to share my professional lab experiences, explain how lab procedures work and express my opinion about various lab topics, all of which stop short of telling patients what to do.

The question that I am most troubled by is, “How likely am I to get pregnant or have this particular outcome?” The answer must be, I don’t know. I can tell you that based on my professional experience with X number of patients similar to you, (0-100%)  had this outcome.  On a personal basis, it may appear that you are more likely to fall in bucket A with X outcome, but you just might fall into bucket B with Y outcome, though it is less likely. Until we actually have the outcome, we never know for sure.

I totally understand the human desire for certainty and the frustration we feel when we are faced with making decisions with incomplete information. Statistics and probability were invented to try to deal with the uncertainty in everything. Sometimes patients are understandably so exhausted trying to figure it out for themselves,  they just throw up their hands and defer to their physician. That can be a relief to the patient but doctors –I would imagine–probably vary considerably in how comfortable they are with that decider role.

So how can patients make treatment choices for themselves? What information do they need? The most important things to find out about any treatment choice are the risks, benefits and alternatives to the treatment.  When patients are asked to give their consent for almost ANY medical intervention, they are asked to sign consent documents. But the signature on the paper  isn’t the important part of the consent; it is understanding what’s in the document and making a good decision. One wise medical director I once knew told me that informed consent wasn’t a piece of paper but a conversation between the patient and their health care professional about the risks, benefits and alternatives to treatment.  In fact, zooming in to the “Risk, Benefits and Alternatives” on the consent form should provide all the available information in writing that a patient needs to make a good decision about accepting or declining a medical intervention. Unfortunately, most, if not all, consent forms always include the clause that it is possible that not all risks and potential adverse outcomes are known for the procedure.  As dodgy as that sounds, it is unfortunately true. At least, we can usually find out about the known risks.

Some risks of IVF are due to medications. Ovarian hyperstimulation syndrome (OHSS) is a well known risk of taking ovarian stimulation drugs. It is difficult to predict who is at risk for this syndrome, though some risk factors have been identified, such as youth, high estrogen level during stimulation and polycystic ovarian syndrome (PCOS).  OHSS can dramatically increase the patient’s fluid volume  but some mild versions of OHSS can be medically managed without hospitalization. In extreme cases, patients are hospitalized and a small percentage of patients actually die from respiratory and cardiac complications.

Egg retrieval surgery is fairly benign as surgeries go. Transvaginal ultrasound guided egg retrieval is often done with conscious sedation and patients go home without obvious ill effect an hour or two after the procedure. But because it is surgery with sharp needles, it is possible to hit a blood vessel and have excessive bleeding or suffer a post-operative infection. These complications are minimized by careful surgery, access to emergency medical services and prophylactic antibiotics. In the article “Implanting Uncertainty into Emergency Department’, Michael Epter, DO summarizes a variety of emergency scenarios that can arise arise post-IVF treatment.  So we must recognize that there are some bad outcomes in a few patients. So, you ask your doctor, what has been your experience with this medical intervention with patients like me? You listen to his answers and you try to get a gut feeling for your personal risk.

Transferring embryos carries risk. Transferring more than one embryo increases the patient’s chances of a multiple gestation pregnancy and the well-described obstetrical complications that generally come with it.

Creating and tracking embryos has risk. They can be lost or misidentified. Storage units may fail. It is true that much CAN go wrong, but in good programs, there are redundant safeguards in place and things go right, most of the time, Still, we are humbled by the exceptions that remind us that nothing is absolutely foolproof.

IVF has the risk of failure. Even in exceptional programs with 70% pregnancy rates in their youngest patients, it still means that 30% of their patients will have spent money with little or no return. I say little return because some patients may see a negative outcome as having some benefit because it may provide emotional closure and open consideration of other choices like adoption or child-free living because they have exhausted all the medical avenues they are willing to pursue to have a biological child or experience pregnancy. A negative outcome can also have some value to the patient in that the doctor can better customize the treatment plan (say tweaking the stimulation protocol or using sperm injection for a future cycle) to improve the odds of success for the patient in the next cycle. Of course, these relative meager “returns on investment” are not immediately apparent when a patient feels devastated by a negative pregnancy result.

If you are interested in more information on risks associated with IVF,  ASRM publishes a free fact sheet that can be downloaded here.

IVF also carries financial risk. Your doctor can tell you what to expect in out-of-pocket expenses but he can’t tell you if you can afford IVF.

What is the potential benefit of IVF? Well, that’s an easy one, it’s why you’d put yourself through all this aggravation in the first place. To start or enlarge your family. To prevent passing on a disease gene to the next generation. To have a boy or a girl to round out your family.

If the potential risk is low and the potential benefit is high, it’s an easy decision to consent to the medical intervention, but if the risks are moderate and the chance of benefit is low, then it may be time to consider alternatives.  It is really hard to make choices without the foreknowledge of how things will turn out. The best anyone can be expected to do is learn as much as they can, ask questions, then make a choice. It will probably be the right one if you make it.

 

 

© 2011, Carole. All rights reserved.

2 Responses to this entry

  • gingerandlime Says:

    This is brilliant. I’m going to repeat your last sentences for emphasis.

    “The best anyone can be expected to do is learn as much as they can, ask questions, then make a choice. It will probably be the right one if you make it.”

    I do think it’s understandable, though, that people come to you with these questions. You’re obviously knowledgeable, and your writing is really clear for us nonmedical folks. And when we (and by “we” I mean “I”) ask our doctors these same questions, we often get the same kinds of answers you give: percentages, statistics, risk factors. It’s all important information and I’m always glad to get it, but at some point what I’m looking for is advice.

    An answer to the question “But what should I do?” I’m not saying I’d definitely act on specific advice, whether from you or someone else online, or even from my doctor or nurse, but what I’m looking for when I ask those kinds of questions, I think, is a decisionmaking model. Some indication that it’s possible to sift the facts, the test results, and the risk factors, and come up with an actual answer.

    It’s easy to feel lost in medical information. It’s not my area of expertise (to say the least), and even when presented with all of the facts (success percentages, risk factors, alternatives), it can be very, very difficult to make the cognitive leap from that into starting to make a decision.

    (Sorry for the wall of text. I need to keep reminding myself that this is why I have my own blog…)

  • Carole Says:

    Dear Ginger and Lime,
    Thanks so much for your insightful comments. Your feedback is very useful for me because it is sometimes difficult for me to find the sweet spot of enough information, but not too much. I also like your concept of looking for a “decision making model”. I will try to keep that in mind when I post. Because medicine is as much art as science, it’s not always obvious which choice will be right-even to “experts”- but I think if the patient is involved in the process, the odds improve, not only for compliance with treatment but for also for better outcomes. Thanks for helping me make this blog better! 🙂 Carole

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