The Irish Society for Quality and Safety in Healthcare has never asked patients about compassion in its surveys about patient experience directly, but as I thought about it, I thought how the ISQSH ask lots of questions that centre on the whole concept of compassion and what it means to me.
When you are ill and in hospital you are vulnerable, even the most vocal amongst us can be silenced. Someone once described it to me as ‘white coat syndrome’ but it’s more than that. I have to put myself into this picture to convey what I see every week or have heard so often or read in the comments I receive from surveys about patient experiences.
Imagine yourself sitting in bed in your pyjamas. Straight away there is vulnerability, I don’t know about you but clothes are my barrier. When I go to meetings where I need to show I am a strong CEO, I try to dress to impress; full battle make-up on. When I am collecting the children from school, the casual look; clean, tidy but nothing to embarrass the children. When on a night out; fashionable but age appropriate. Then when at home relaxing or sleeping maybe my pyjamas. However, would I want to be seen in public dressed like that? Despite current trends in Ireland, no. But here I am in a public place, a hospital ward in my pyjamas feeling sick – no protection. People I don’t know, nor am likely to meet again are sleeping in the same room and there’s no privacy.
Healthcare professionals who more often than not are so busy they forget or wont introduce themselves or when they do they use words like SHO Registrar, phlebotomist, cardiac technician, clinical nurse manager – all relevant titles but what do they mean to me sitting in my bed? I’m not feeling well, I don’t know really what’s wrong, I’m told I’m getting bloods done and an x-ray, but why? For what? And when? What will it tell me about why I feel bad? Am I just another case to you? Or am I a person with a name?
I feel self-conscious. I know people can hear our conversation so how can I tell you I’m afraid or I don’t understand what’s going on or that I can’t hear your hushed tones because I am losing my hearing. Nobody wants to admit they don’t understand. Or maybe yes I understand the blood test but what are you looking for, why is it taking place? What will it tell you? What will you be able to tell me as a result?
Now it is busy. You rush in. I’m up for breakfast at some ungodly hour considering I hardly slept will all the commotion of the night. The ward is a very busy place. Like in all jobs, there are those that are enthusiastic and love their work, those who are doing it for the paycheque and those who strive to do their best in highly resource constrained conditions. I’m still in bed watch the hustle and bustle. Maybe I am constrained to bed or told to sit in the chair beside my bed. If I need to use the bathroom I lay here to wait until someone can bring me or worse still to use a bed pan-the humility of it, can you feel mine? Needing someone to help me with something I have done for myself since I was a child – the tears sting my eyes but I try to retain my dignity and composure.
I am told I am going for a test but not sure when so I start the waiting game. Am I to fast? Who knows – ah sure lets fast then just in case. No sign of anyone coming to bring me for my test... everyone is eating lunch now, still no news.
If I am lucky enough to have family, they have most likely rung me several times to find out what’s happening. They do their best to visit and spend time, but now I feel I am a burden. I watch the clock for visiting times to see will someone come. Can my husband get a bus here? Will anyone have the time to visit with everything that is going on? The children need to be looked after, they’re under 12 so no chance of seeing them for the next few days/weeks. I don’t spend much time apart from them so now I am lonely.
If I am elderly I think to myself it could be worse. My children will hopefully have a job and their own children and their own busy lives. Children or none, either way I might watch the clock tick slowly past visiting hours with no one coming to see me. Or sometimes in the evening one of my children will come straight from work and pass a few hours with me, most likely asking me what happened today, what tests, what news, was I told. How much do I say I don’t know? I didn’t know quite how to ask or understand what the clinicians were saying to me?
It goes on like this for a few days and you start to look forward to the small things sent your way; the smile from a nurse who arranges your bed and asks how you are? Fine you say. We talk about the weather; the catering staff who come and give you a real cup of tea and the way you like it, with only a drop of milk, because they listened to you; the clinician who introduces themselves by their name first and then explains not their title but where they fit in in the scheme of things; the ones who sit and actively listen or who watch for the signs, like the hesitant pause I take as I wait to ask a question and the confused look on my face they rely on when I do understand. Those who give me the time to absorb and adjust – the ones who see me and not just as case A with conditions X & Y.
So what is compassion to me?
It’s the willingness to see me as a person, to understand I am here not because I want to be but because I have to be. It’s the seeing that at this time, this is not a true reflection of me. It’s the understanding that I am facing some of my fears, worrying about my dignity and respect, and above all when I am not well.
Compassion for me is summed up by the reassurance that you will do your job professionally and safely but whilst caring for me with dignity, respect and above all that you will treat me as you yourself would like to be treated if you were in my position.