I was asked to record a video for part of the Respiratory Critical Care session at the European Respiratory Society Congress. The session was titled “New Developments in Mechanical Ventilation and Ventilator Weaning” and my video was to focus on my experience of being weaned from a ventilator.
Im not going to lie it was really hard to record this video. Normally with talks I am very relaxed and will have a rough idea of what I am going to say but that is because I am used to speaking about the topic. I go back to when I first started doing any talks. I would get really nervous an emotional when giving a talk particularly when speaking about my experience of near fatal asthma attacks and those who I have known who died as a result of asthma. Now when discussing this topic I am able to keep my emotions in check and can use them when needed to emphasise points etc. There is still the odd occasion when I do get emotional while speaking about my experiences with asthma but not that often.
I am not as used to speaking about my experience of being in intensive care. Although I have written quite freely about my experiences it is a very different matter speaking publicly about it especially to people who work in the profession. It also stirred up some difficult memories. Memories of my behaviour not being quite as it should because I was under the influence of the drugs they used to put me into a coma. It is so important to share our experiences as patients because it is the only way that healthcare can move forward and make changes. It helps them to understand how the patient feels. The video is only 5 minutes but I could have spoken a lot longer about my experience as it is such a complex area that I really wanted to go into more detail and elaborate on certain aspects.
The part I find most difficult about the whole process of being not the ventilator and coming off it is the ability to communicate. Having a tube down your throat you cant speak- although I am sure I tried really hard to try. I was given a white board and pen to try and write- I am not sure I was able to do that. I have a memory of a scribble on a white board which I am not sure if that was what I did in my attempt to communicate or was just on the board already but this memory did get me thinking about methods of communication with a patient in ICU. I was given the board when I was still intubated but was not in a coma. The drugs used had been withdrawn and I guess was being prepared to be extubated, this was when I was given the board, although I no longer had drugs on board I was still not with it and do not think I would have been able to write. But what made the issue more difficult was that I had an arterial line in my wrist so that hand was out of commission and venflons in the other hand which were precarious at best. This made writing tricky yet no other methods of communication were offered to me.
Do we always assume that when someone cant speak they therefore can write, but what about those people who cant write (there are so many reasons for this). Do they get left with no means of communication. I have been thinking a lot about this and wonder what other ICU units do. I know in Stroke units they have a wider range of communication aids but it seems ICU is very primitive in their methods it is either speak or write.
In the question and answer session after my video was shown I was asked where do I think future research for ICU needs to be. I was not really prepared for this question but my answer was communication although my answer focused more on the communication of Dr and Nurses to the patient and relatives when explaining treatments and why they are being done but perhaps this should be expanded and there should be more ways on offer to communicate when you cant speak or write. It is frustrating when it just becomes a guessing game- I know this all to well when suffering from an asthma attack and can only say a few words, people get impatient and guess what I am trying to say rather than waiting till I have finished or I just get told to save my breath as I am clearly to breathless to speak but don’t get offered any other means of communicating vital information.
I think there is the potential for using some sort of pictorial communication much like what us used for people who are non verbal but probably not quite as complex and in-depth just have some of the basic things a patient might need or want to know. A focus group with patients could be held to determine what questions patients tend to want to ask and make a picture board of these sort of things.
I unfortunately have a lot of experience of being in intensive care and will probably continue to build on that experience but what I do not tend to do is speak about my experience and I need to do that to ensure that care continues to really benefit the patients no matter how difficult it is to relive the experiences as like with my asthma it will get easy to keep the emotions in check and I will not find it quite as distressing.