The Exceptional Infertility Patient

June 2, 2011Carole No Comments »

Exceptionalism, defined as, “The condition of being exceptional or unique”  is a wonderful thing. Right? We love and reward the exceptional athlete, scholar or leader. But exceptionalism is a double-edged sword because of the second part of the definition,”The theory or belief that something does not conform to a pattern or norm,” can be problematic.

I like answering questions from patients. I answer questions sent to me by email and participate in chat forums and support group forums. I do this because I believe that patients benefit from a deeper understanding of what is going on in the lab with their embryos. I stay away from physician and nurse questions because then I am wading into unfamiliar territory and you wouldn’t ask your dentist about your colon, now would you? Same tube, but wrong end.

The other reason I answer questions is because I am a huge believer in the idea that understanding what ails you and what treatments are offered to you makes you a better partner in your health care and you, the patient, are more likely to do well with that treatment because you are “on board” with it.

But every now and again I run into the exceptional infertility patient who needs a “special” protocol and won’t take “no” for an answer. I don’t mean that every patient shouldn’t get individual attention and, of course!, medications must be tweaked for individual differences in responses. Treatment plans that take into account individual variation and are more tailored to individual needs are probably more likely to succeed. Don’t like progesterone injections?- maybe you can tolerate this vaginal progesterone suppository better? Is this prenatal vitamin giving you a stomach ache, here’s another brand you can try. And so on.

It’s when patients ask for outmoded protocols like hatching when the lab has clearly moved on to day 5 blastocyst culture and transfer (and thereby doubled their pregnancy rate!), but they accommodate the patient who wants exactly the same protocol they had three years previously when junior was conceived. What’s the downside?  Micromanipulation protocols are highly exacting  and require on-going practice to keep skills sharp. If you ask for an old protocol, there may not be anyone who is at the top of their game at this protocol because no one has done it for years. They may have even discontinued their protocol and may not be training new staff on it anymore.

Another patient wants the doctor to change when they transfer the embryos back after PGD, transfer some back now in the fresh cycle and some back later. That might be fine or that might be a deviation from the usual lab/program protocol.

Changes in protocols in both physician practice and the laboratory should slowly change over time as our understanding of reproductive medicine and science advance. Change is not entered into on a whim (at least not in the good programs!) but is usually introduced slowly, perhaps with a side-by-side trial of existing methods so that adverse outcomes can be managed and patient outcomes preserved. If the doctor or lab doesn’t want to do something a patient asks, there is usually a good reason why they are reluctant. Think about it. They want you to be a happy customer. There is no benefit to them to providing “poor customer service” or to being “mean”.

Deviations from lab protocols actually have to be written up and explained to a lab inspector. But that’s not why deviation from protocols are problematic. Special “one-off” protocols are problematic because some of these protocols may not be consistent with what the lab and program have proven to work well for previous patients. Special protocols can alter lab work flow and mistakes can happen more easily when there are new moving parts. Communication can fail (The patient wanted what?!!,  we did X as usual…) and mistakes can be introduced.

No one wants to be the first patient to ever receive a treatment, right? No one wants to be the guinea pig but some patients unwittingly put themselves in that position by insisting on special deviations from protocols just for them. That doesn’t mean you shouldn’t ask for things. Some changes are no problem at all. But when your doctor starts to use phrases like, “can’t recommend”, “wouldn’t suggest”, “concerns about”, that means you need to stop and ask yourself,  “Is this deviation from protocol so important to me that I am willing to force the program into a zone of discomfort where they might not be able to perform their best for me?” Because, in the end, unfortunately, exceptional patients almost always get their way because the”customer is always right”. Sadly, the exceptional patient may not always be happy with the outcome when they get their way.

© 2011, Carole. All rights reserved.

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