Informed consent: why are we still trying?

With only seven years of experience as a medical doctor, half of which as a doctor in tropical medicine, I can’t say I am a senior specialist. However, I have worked in several countries in three different continents. And even though every country is unique in its own right and the differences in culture and politics are obvious, you do come across commonalities, such as poverty and violence. Ethical issues are definitely a third shared aspect. This may be less expected but, from my own experience, I can say that the ethical issues to be dealt with are comparable across low- and middle-income countries around the world.

To understand what, from an ethical point of view, is right or wrong, try to imagine the following situation. You’re working in the Amazon rainforest on the border between Ecuador and Peru. At seven o’clock at night, a young woman arrives at your emergency department. She is unconscious due to extensive blood loss caused by an artery dissection in her upper arm by a machete. She needs surgery, but before loosening the tourniquet she will need a blood transfusion. You decide to search for blood donors in the little village where you are working, but as you have experienced before, the people of the village, Indian descendants of the Quechua, are afraid to drain a bag of blood from their veins. They believe it gives you mal aire, bad influences, or they think it is all the blood you have and you will die. Even though this last conviction is certainly false, and you don’t share the first one, as a medical professional, you do have to respect these fears.

Now imagine that this situation is actually happening. This young woman is almost dying there in your emergency department, on your watch! You have sworn the oath of Hippocrates that you will do everything in your ability and judgement that is reasonable to save her life. You know from your own experience that the Quechua have great difficulties in expressing their own opinion. When communicating with a Western medical specialist, this becomes practically impossible. You know that, if you ask them to donate blood, they won’t say no. Even though it’s obvious to you that they don’t want to do it, within an hour, you manage to ‘convince’ four people to donate their blood and you save the woman’s life. From an ethical point of view, this was an act of paternalism where the young woman is the only one who benefited. Is this wrong? Is failing to wait for the honest opinions of the donors not abusive? On the other hand, you have sworn that you would do everything in your ability to heal people and that is what you did. Is that wrong? The patient survived and the four donors are still in perfect shape. But at the risk of having mal aire?

Imagine another real-life situation, this time in Sierra Leone. A nine months pregnant woman is brought into the hospital because of fits. Eclampsia. After starting treatment for her eclampsia, you conclude that she doesn’t have enough dilatation and she will need a cesarean section. An ultrasound demonstrates that the baby has already died. This turns out to be her ninth pregnancy, and the woman does have some children who are alive. Therefore, you also would like to sterilize her to prevent more pathology in new pregnancies. The first thing you have to do before you proceed is ask for informed consent. The pregnant woman is eclamptic and therefore not able to communicate with you, so you will have to talk to her husband. There you go then: ‘I have to do an emergency cesarean section, meaning that we will have to make a large cut in the abdomen of your wife so we can take out your dead unborn son. Since her condition is very dangerous, we need to sterilize her as well to prevent new pregnancies.’ Of course, if you had more time, you would explain it better with examples and even drawings. But you do not have this time.

In this situation, no medical professional would doubt that you are doing a good job by performing the caesarean and the sterilization. But what if the husband does not agree? What if he doesn’t believe that his unborn son is already dead? He would not understand the ultrasound. He believes that the fits are the result of shamanism. You can explain as much about anatomy and pathology as you like, but the husband will not understand or believe you. What is then the value of trying to ask his informed consent? Is this a waste of very valuable time? Of course, not every surgery in Africa is this urgent. But even small and non-emergent interventions like hernia repairs are difficult to explain if the beliefs of the patients do not fit with those of Western medicine.

You may wonder what the value of informed consent is throughout low- and middle-income countries. In my opinion, you are just trying to convince your patient of the indication you have for an intervention, while this person has no clue as to what you’re saying. So why waste time and effort in doing this? Most likely you are only making the patient or the family more anxious than they already are. Or they will doubt your skills even more. Should we then stop asking for informed consent in low- and middle-income countries? Certainly not. However, there is no easy answer how to solve this delicate issue. Should the doctor get more freedom to decide if the patient or family are qualified to be asked for full consent? When in doubt about these qualifications, should the medical professional be allowed to reduce the amount of information so that the patient is merely notified instead of having to give permission for what is about to happen? But this of course brings us back to the issue of paternalism.