I get it: each profession needs its own specialized language. It does have a purpose. It would take much longer to discuss things without a common understanding and standardized use of specific terms. Nobody wants to search for appropriate terms to express what they need to express, esp. in time-critical situations that medical staff might find themselves in. Although this makes the process more efficient between the professionals, I always wonder how many patients only understand half of what they get told. I always appreciate doctors who know whent to cut the lingo. And I question who made the decision that the language often appears emotionless or neutral? Does it make it easier for doctors and nurses to endure all the tragedies that they become part of? I often wonder how health professionals do it? It seems incredibly hard to witness tragedies and then go home to spend time with the family. Of course there are many rewarding things that happen as well: the lives saved, the successful treatments, experiencing the human will to survive. Or the fact that even tragedies can teach us something. But I am digressing… The real issue is that I could accept and understand such arguments, but to a bereaved parent like myself medical language or I should rather say medical forms are sometimes difficult.
Try to imagine a situation in which all your dreams have just been shredded to pieces. After months of waiting and preparation you are not allowed to hold your living, breathing, crying baby in your arms, but mourn the passing of your child. And then there is a lot of paperwork that needs to be done and it cannot wait. A few hours yes, but not days, weeks or months one might need to even comprehend what is going on or to process what is being asked. Before I write about some of these details, I want to give credit to the amazing work that hospital staff do. I certainly would not want to be the person who has to discuss these things with anyone, certainly not parents who just lost an infant. They do this with as much sympathy and care as possible. Noone can take the pain away or change the fact that certain things might have to happen. We had a lot of support from medical staff explaining details to us, answering our questions and helping us reach decisions in a very sensitive way. The more surprising it is that the people we interact with find appropriate words, even if they are difficult ones, whereas some of the paper forms seem offensive.
I recently read a quote “This is not a bakery. I don’t sugar coat anything. If you ask for my opinion then that’s what you’ll get. Don’t be mad when it’s not what you want to hear”. In medicine, I certainly don’t want bakers. I want honesty because otherwise we would not be able to make informed and timely decisions. I don’t want to have to get through a ton of icing first before I get to the bottom of things. I appreciate honesty even if it hurts. Being honest can be very difficult at the same time in a setting where nothing is for certain. A question such as “how are the chances” are not easy to answer and a doctor has to weigh the response carefully. Anyway, what I am trying to say is that I am not complaining about the message or the messenger.
Here is an example. Bereaved parents have to think about autopsies. It is a very tough decision to make as we have certain images in our minds about the procedure and morgues be it from how it is shown on TV or our own vivid imagination. It is very difficult to accept the facts about an autopsy, but doctors, nurses and social workers make it bearable by reassuring parents that everyone will treat the child with the utmost respect and dignity and that the people performing the autopsies are parents as well and know that they have been entrusted with the most precious a parent can have. This is hard, but it is not offensive. Moreover, the human body and mind seem to have some mechanism to function in the most difficult situations. There is clarity in the face of desaster. One does what has to be done which does not mean that shock and pain don’t set in later when the situation calms down. The autopsy approval form was complex and difficult to understand without an expert explaining what all the different options meant, but it was doable and I did not necessarily take offense on certain words.
However, there were some forms that just made me very angry. One read: “How do you want to dispose of the body?” or it might just have been “Disposal”, I can’t remember anymore. Excuse me? Is it just me as a non-native English speaker or is the immediate association that comes to mind that I dispose of rubbish, but not my child. Why can’t they write “How do you wish the remains of the deceased to be handled” or something like that? I believe that at some point someone in the hospital even apologized for the questions and the wording on the forms. If that is the case, why can’t we get these things changed?