Why is the third part to the previous posts titled so? We all know that the eye is the calmest part of a hurricane. However to get to the eye, or to get out, you have to pass through the ‘eye wall’ which happens to be the most dangerous part of the storm.
You see, even though they are caught in the storm, to the decision makers, we are the people where they find reason, assurance and even peace, maybe. The only problem being, the figurative ‘eye wall’ of confusion, mistrust, helplessness and grief needs to be crossed.
Now imagine that finally, after all that waiting outside the door, the relatives have been called inside and the formal meeting with the doctor has happened, and the condition, plan and updates have been explained to them, in a language that they understand. But have we ever thought about the extent to which they were listening or how much they understood? Sure, we always ask them whether they have any questions, but were they even listening to us or were they distracted by the ICU settings and also trying to catch a glimpse of their loved one?
I don’t know if it ever crossed your minds, but only recently did I realize the psychological trauma that relatives have when they see someone in ICU. To us, the IV access, arterial lines, ET tube, monitors and the other equipments are just extensions to the patient’s body. But imagine the horror of a non medical person on seeing it all. The beeping, the alarms, and the numbers on the monitors definitely doesn’t make any sense to them while being horror inducing nevertheless.
Breaking bad news often includes explaining to the relatives the option of withdrawing supports. When the option is suggested to the relatives, it’s because it’s the only logical option left to us , because usually the alternative will be complete dependency on life support, till the tired body finally gives up. Or even worse, the rest of the life that’s spent in a vegetative state, assuming that he/she tides over the other problems. But, imagine the state the poor relative is in when you tell him to make the call. We can never blame him if he feels we have just asked him to commit murder. Even if he completely understands why we have suggested the option, it’s still an unthinkable option. As doctors we never commit to anything with 100 percent certainty. Even when we suggest withdrawal, our numbers are something like 0.1 or even 1 percent chance of recovery. Now this number makes sense to us because we understand the condition with it’s prognosis and anticipated complications, but for a lay person , even the smallest chance of recovery is still a chance that’s worth taking if that means the patient is going to make it. I mean, a drowning person will even clutch a straw to stay alive.
More than the proverbial straw, there are multiple reasons that prompt people to not withdraw life support, even after explaining everything in detail. Sometimes it’s the doubt that makes him question whether he has done enough to give his loved one a chance at survival. Sometimes it’s just the longing to have them around for as long as possible.
As a country, we are not very comfortable with the idea of death. The possibility of a catastrophic event happening and what next is never talked about. I can’t even imagine us doctors talking about a living will and what is to be done next in the event we are the ones who are on life support. Hence the confusion about whether or not the patient would have wanted the plug to be pulled is almost universal (not that patient autonomy vs relatives wish is big in our country either, but that’s for a different day ).
So the moment withdrawal of supports is mentioned, it’s almost like throwing them at the ‘eye wall’ all over again. We have just added to the confusion by suggesting an unthinkable action. Even we struggle with the concept of vegetative state, minimally conscious state and brain death at times. It’s a difficult concept to wrap even our trained heads around. For a non medical person, its definitely not going to make sense – because our concept of life, culturally, is that of a beating heart, not so much about the brain. So in their eyes, the heart is beating, he is taking breaths, hence the patient is alive, right? It doesn’t matter if they are on maximum inotropes or they are breathing only because of the ventilator. As long as it’s happening , they are alive.
I agree that sitting down with the relatives and explaining to them till they understand fully is not a feasible option, especially if it’s an arrest or something requiring urgent decisions. Even otherwise, spending so much time with the relatives is not possible as we are all severely pressed for time. Also, all this while, we have not even addressed the emotional trauma inflicted on the relatives- I’m sure that a significant number of them slip into clinical/subclinical depression, or have something like PTSD after they leave the hospital. I guess the number would be directly related to how sudden the event was, considering they have had less time to adjust to the situation.
This brings me to the suggestion of giving equal importance to the relatives’ mental health, especially in situations involving critical care. Most of the times, you have angry / defensive/ difficult relatives because they didn’t have any time to process. Most of them only need some time. Contrary to popular belief, the relatives don’t want our empathy/ sympathy. They just want clarity, they are willing to hear the truth as it is , as long as they have some time. Unfortunately that is exactly what we don’t have. Someone wise told me during my difficult time that breaking bad news is like building a house. You have to lay a foundation first, then once that’s strong, build the walls, and put the roof once the walls are ready. I’m now of the belief that having a counselor available at all times in critical care will change a lot of the difficulties we face in breaking bad news. I’m saying this because I was mostly doing the role of a counselor the time I was at home. The clarity in which the doctor explained the prognosis and further options was definitely the calm at the center of the storm. However what protected the relatives from being blown away was the reassurance that they were doing the right thing, which did not come because I reassured them. The reassurance came automatically because I played the role of a counselor.
While I don’t know how much of the way I break bad news is going to change after the whole experience, I know that I will never be upset at a relative for not trusting me or being angry at me because now I know where it’s all coming from.
Every patient, every relative is different, every experience is different, however the pain, the confusion and all the other emotions they feel are similar I guess. And through it all, even with their mistrust, even with their anger, even with pain, they are looking up to us to be the source of clarity and sound judgement, the calm at the center of the storm.