Why are IVF patients so poorly informed ?

I often see patients who have failed IVF treatment cycles in other clinics. In order to maximize their chances of having a baby, I need to craft an IVF treatment protocol which is tailored to their needs, so that they can produce good-quality embryos. In order to individualise their IVF treatment plan , I need to find out exactly what treatment protocol the earlier doctor had used, and how good the quality of the embryos in the previous cycle was. This is basic information which every good IVF clinic provides , based on which I can change the superovulation protocol in order to maximize the chances of success.

Much to my dismay , I find many patients are completely clueless about their IVF treatment protocols. They often don't know what dose of injections they were taking ( because the nurse used to administer these at the clinic !) ; they have never been shown their ultrasound scans during the follicular monitoring; the doctor never bothered to tell them exactly how many eggs were retrieved or how many embryos were transferred; they have no photographs of their embryos ; and don't even have a printed treatment summary of their IVF cycle.

This lack of information makes my blood boil and when I ask my patients why they don't know the answers to these basic questions, many of them are quite embarrassed at their ignorance. Some get quite defensive , because they think I'm criticizing them, and will often provide excuses as to why they know so little about their actual treatment.

Common answers include
• The doctor never told me anything. ( They often resent the fact that the doctor was not open or transparent and did not share information with them)
• I didn't know I could ask these questions
• The IVF clinic doesn't provide any of these details
• The IVF clinic keeps all the medical records and doesn't give anything to any patient

I think all these are lame excuses. Patients have a legal right to their medical records – but not only is this a right , this is also a responsibility ; and it’s their duty to ask for a copy of their records. Transferring the blame on to the doctor for not providing this information does not absolve the patient of the fact that they failed to take responsibility for the quality of medical care which they received.

Some of this has to do with the paternalistic attitude which doctors still adopt towards patients in India. However, there’s no point in criticize the doctor, because a doctor’s approach is not something which a patient can influence. My major unhappiness lies with the fact that patients don't take a proactive role in their medical care. They don't do any homework , either before the treatment cycle or during it, as a result of which they suffer a lot of unnecessary damage because of their ignorance.

A simple remedy to this problem is what I call Information Therapy. Patients need to make sure they've done their homework before actually starting the treatment cycle . This allows them to ask the doctor intelligent questions while the treatment is going on. Ignorance is not bliss – and the squeaky wheel gets the grease ! This approach ensures that they get intelligent answers to all their questions, and are not fobbed off by generalities , or the standard byline - That's not the way we do things at our clinic.

While it does break my heart when patients have poor documentation about their IVF cycle ( because poor documentation often suggests poor quality medical care), the purpose of my asking these questions is not to make patients feel bad, but rather to emphasize to them that while they are allowed to make one mistake once , smart people don't make the same mistake twice . They need to take a more engaged approach towards their treatment , in order to maximize their chances of success.

While some patients do get upset about my critical attitude, most of them are enlightened enough to understand that I’m just trying to help them in order to achieve their goal - and that the reason I'm being critical is because I care for them.