Behind the PPE: what helped me feel safe
Yesterday I went for an endoscopic procedure. It was done to get biopsies to check how my body is reacting now that I’ve eliminated wheat, dairy and soya from my consumption since before Christmas. This will be one of the first hospital appointments since lockdown began to be eased. It meant that reception and nurses all wore masks and I’d had a telephone conversation the day before so they could check me for Covid risks.
After the initial checks by nurse for temperature, blood pressure etc I was sent back to waiting area until my doctor was ready for me. I was called eventually and led down a corridor to the theatre. I could see a figure at the door of a room off the corridor and it looked like my consultant. When I say that it looked like him, I mean that it looked like he was a he, that he had the same colour of hair and looked about the same height and build as my consultant. Getting closer my assumptions were confirmed as he spoke and I was close enough to see his eyes. He was clad head to foot in PPE, of course, because of Covid19.
We started speaking as he lifted his arm up to invite me to connect through touch. Obviously a hand shake is out of the question, so I raised my forearm up also and we bumped arms.
This was my fifth experience of this procedure, if I’ve recalled correctly. It’s not pleasant at all. I choose not to be sedated as I do not like the feeling. The first time I had an endoscopy was when food was stuck so that might have had an impact on it. However, my body tried to remove the strange thing being introduced but I was not fully ‘compos mentis’. This was not a good combination for me. I don’t know now how I exactly reacted but I was not happy. I’m sure there was probably thrashing around and there might even have been quite violent reactions. All I know is that they had to abandon the procedure. They’d got some food removed and the rest came up while I was in recovery. They had to take me back down two days later to get the biopsies to confirm diagnosis. I choose to have these procedures now with just a throat spray to numb the back of my throat and some of my oesophagus. It tastes horrible but is effective. But I remain awake and alert and can concentrate on keeping calm.
The reason for the food being stuck is Eosinophilic Oesophagitis and this can only be diagnosed by biopsies which show a density of eosinophils higher than 15/HPF (high power microscope field). At the last biopsy, for wheat, the density of eosinophils in my oesophagus were over 200! There shouldn’t really be any. And they appear to be there as a reaction to something. It’s an immune mediated response to food groups usually, although it can be other things in the environment. It also causes other physical changes to the tissues which are visible to the eye, such as ‘tramlines.’
Anyway, at the moment I’m living a normal life with no symptoms because I’ve eliminated wheat, dairy and soya from my diet. So I anticipate that the results from the ‘scope yesterday should show no or very low levels of eosinophils. When I first eliminated these food groups at the start of this journey the ‘scope then showed just 1 or 2 eosinophils.
But the point of this story is coming.
Although the clinicians in the room with me were head to food in PPE and I could barely see their eyes they all did their best to offer verbal reassurance. However, human beings use non verbal language to assess safety. We observe facial expressions for even the very finest, nuanced of changes. We don’t even do this at a cognitive level. This is being done by our subconscious mind. If someone tries to fake a smile their mouth might make a smiling shape but our subconscious will clock that the smile does not extend to the eyes. They won’t ‘sparkle’ and the skin around them doesn’t crease in the same way. I have to admit that under all the PPE even the eyes were not easy to observe.
Thankfully I had met my consultant in his office a few times now and he was the person to do the previous endoscopy too. I have no idea if either of the nurses in the room had been at previous ‘scopes. But as this was my fifth time I knew what to expect, had made informed choices about accepting sedation and knew the person performing the procedure so I was about as relaxed as I could be considering what was coming.
I AM about to reach the exact point of this story. Context is everything, you know.
What I noticed in particular during the process (which is just a few minutes long but feels much longer) is that I was very aware of a nurse’s hand on the side of my head. It wasn’t just that it was there. It was that it was moving in a reassuring way. She not only spoke to me to say how well I was doing but also used touch.
Let me tell you, that when your body is convulsing involuntarily and salivating in response to this foreign body it is NOT pretty. I do not feel like I am doing well. It takes a lot of concentration to remain calm and try to keep my body from reacting. I try to focus on breath and relaxation....
I also noticed other touches which were clearly designed to reassure. I can’t recall if they happened at previous ‘scopes. The final one I particularly noticed was my consultant giving my upper shoulder a squeeze as he moved away from me towards the bench to write up his notes. I can’t even recall exactly what he said at the time but I recall his touch. It also meant I could place him in the room while he was in touch with me, either while performing the procedure or squeezing my shoulder. Once he moved away and was silently writing up notes I lost that connection and felt an urge to look to see if he was still in the room.
I’ve not had much physical touch and none of my usual massages during lockdown so I am aware I might notice touch much more than usual. But I’d like to think that my clinical team were making an actual effort to use touch to provide reassurance and a feeling of safety given what I know about the neuroscience of touch.
During this very unusual time people are living life where they have not been seeing the people they normally see. They have not been able to touch people in safe, appropriate ways, in the way many of us do even in normal conversation, never mind receive friendly hugs from friends or relatives. And if they need any medical attention it will be from people completely hidden away behind PPE. This does not support the feeling of safety that human mammals require.
So, I was appreciative of the efforts to keep everyone safe on all levels and that I am probably not going to have to trek in to get a discussion about the biopsy results in a few weeks time. My consultant said that they now consider the learning that has come out of working online during lockdown. My concern is that video/phone consults do not become routine, but are used in ways where benefits outweigh any downsides. When I had gone in for results after previous ‘scopes I recall leaving wondering why they couldn’t have telephoned me to discuss it. A lot of waiting around and parking costs all for a few minutes with my consultant. But I know how important human interaction is. If I had not been in to see my consultant to discuss my treatment plan and talk about biopsy results I would not have felt reassured by his presence yesterday.
Getting the balance correct is going to be key.