What I couldn’t say when I was working full time in IVF

June 1, 2014Carole 4 Comments »

Before I started my own medical writing consulting business,  I was an IVF lab director. When I was working for someone else, there was a lot I couldn’t say to patients because that was not my role. I still don’t give medical advice, but I often couldn’t give lab-related advice that might be considered critical of the field or of my employer. Here are a few critical facts I can tell you now:

Some IVF programs are not very good. If you are a “virgin” IVF patient- here’s what you shouldn’t do: head off to the nearest IVF clinic based on a radio or cable TV Advertisement or even your best friend or  Ob Gyn’s recommendation. What you should do is do some cold analytical research to find the best program you can get to,  because not all IVF programs are better than average and that range of pregnancy rates  starts at a dismal 13% pregnancy rate and goes to a 66% pregnancy rate. Now, if you want to donate your eggs to “research” , you can go to the 13% pregnancy rate clinic. You won’t pay any less but boy, you will have many chances to “practice “doing IVF until your 13% clinic gets it right. Or you can go to http://www.sart.org/find_frm.html and look up the clinics in your area. You can also look at a chart of the national average of all reporting clinics here:  https://www.sartcorsonline.co/rptCSR_PublicMultYear.aspx?ClinicPKID=0.  The good news is that the average pregnancy rate has been steadily improving and in 2011, in the US, the average pregnancy rate for the youngest age group using their own eggs was 43%.

The fact that IVF patients can access the outcome statistics of every IVF program in the country is an amazing thing. If you have any other medical complaint, you do not have this sort of resource. Like any data set, it has its limitations which are outlined here http://www.cdc.gov/art/ART2009/IntroClinicTable.htm#Important%20Factors.  Even with some limitations, these data are an amazing resource and if you want to increase your chances of getting pregnant sooner rather than later, you really should do a little research before you hand over that $12,000 (or more) for a SINGLE IVF cycle.

Some IVF clinics in the US are run more like a car showrooms with special deals, upgrades and options, than like a medical calling. Unlike other medical services which are  universally covered by insurance (eg. cancer treatments, other ailments), IVF is still considered to be more like cosmetic services than cancer care. IVF is perceived to be “optional” and IVF programs will vigorously compete to get your money and your business. You might be offered upgrades and special packages to enhance your experience, massages, acupuncture etc.  I have become rather cynical about the fancy medical offices and expensive advertising campaigns, precisely because I have experienced lovely high-end waiting rooms in the front end and dirty incubators in the back end. I have struggled to try to convince thick-headed, greedy lab owners that yes, they did need a lab manual with updated written protocols and procedures and methodical training of lab staff to ensure high and reproducible pregnancy rates. That yes, we might have to risk the “brand” and clinic “image” in order to be honest and ethical with patients about poor outcomes (eg. the tech lost the embryo during manipulations at thawing instead of “the embryo did not survive the thaw”).  Yes, the embryo is just as dead in both instances but the second instance- while preserving clinic image-  is far more damaging to the patient because it implies there is something intrinsically wrong with the embryo and the patient. This sort of “managing the brand”patient communication sets the clinic up to look like a hero the next time when the embryo doesn’t get dropped because now the patient believes they are a “hard” patient  and the clinic overcame these patient-based obstacles to deliver a pregnancy– so I suppose from a marketing viewpoint, it’s win-win.

Just remember when you choose a clinic that the front end is all bull-shit. The back end is where your fate will be determined. This makes the public statistics so important because you literally have no other outcome-based data  to compare clinics and unless you are also an embryologist working at the clinic, no way to inspect and evaluate the back end.

So, before you dive head first into an IVF program with both your heart and your wallet,  take some time to do some research and find the best clinic based on outcomes delivered, not promises made. Good Luck!

 

 

 

 

© 2014, Carole. All rights reserved.

4 Responses to this entry

  • It Is What It Is Says:

    I am curious as to your opinion about why some clinics offer direct contact with the lab as part of the standard of care, while others do not. The only interaction I had with the embryologist was the morning of transfer when he came in to discuss the state of the embryos and confirm how many we were going to transfer (or defer to my RE if that was up for discussion). I would have much preferred greater contact and transparency along the way (how many mature eggs/how many fertilized/cell count at various checks).

    Some clinics provide this as standard operating procedure.

  • Carole Says:

    Hi It is what it is:
    That’s a very interesting question. Based on my experience and comparing notes with other embryologists, there are several reasons that come up as reasons why a program may decide to limit the patient interaction with the lab staff. Sometimes the resistance comes from the lab side: if staff are not comfortable with English, they may be reluctant to speak with patients for fear of making mistakes in communicating the information. On the clinic side (nurses and doctors) may want to control the messaging. Nurses and doctors sometimes have simplified the conversation so much, they don’t want the lab staff to use technical terms that may “confuse” the patient. Some clinics prefer that lab staff handle patient call backs about embryo stage because it is one less phone call for them. At one clinic, I had to sit in the office with the patient in front of the MD to give the embryology report to the patient. He was often working on other charts while I did this and usually did not enter into the conversation so I never did understand the purpose of that staged interaction. At another clinic, we gave the embryology report to the nurses – who asked for a simplified report that can be given to patients- eg. “3 good embryos, 1 so:so, 1 bad” and only if the patient wanted more information, did the lab call back the patient to discuss in detail. At another clinic, the lab was responsible for all the call backs and making appointments for transfers and one tech had these calls down to an unintelligible rapid fire 1 min or less voice mail- which included the patient’s appointment date and time for transfer! When I called her on it because I couldn’t understand her message and I knew all the jargon- she basically told me that she didn’t have time to discuss it more clearly– in this lab, the owners made clear that efficiency and profits were the primary motivator. Ultimately it rolls back to the philosophy of the clinic owners regarding the value of patient education and transparency.If you think that the patient should really understand what is going on- or at least be offered that resource to answer questions if they want it, you hire staff with good communication skills (as well as good technical skills) and give them sufficient time to explain to both the nurses and the patients what is really going on. Alternatively, if the philosophy is more in line with managing and streamlining patient flow through the process to maximize profit, you might be less motivated to spend money (more better staff and staff time) that is necessary for a deeper patient education- which some patients may not even want.

  • Dr Malpani Says:

    One easy solution would be to routinely provide patients with photos of their embryos. A picture is worth a 1000 words and they could easily check how good the embryo quality was for themselves, without having to need to talk to an embryologist !

  • Carole Says:

    HI Dr. Malpani,
    It certainly is helpful for patients to see photos of their embryos –but the embryologist should still be available to explain what they are looking at because I find that patients have many follow-up questions even if their embryos look text book perfect. 🙂 Carole

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