I thought I had posted this the other day, but it seems the Gremlins have got in and my post somehow disappeared.

It went something like this…

I was having lunch with my Social Work colleagues at work and somehow the subject of death came up. One of the team used the term ‘Passed Away’ for someone having died. The senior Social Worker at the table then went on to say that as Clinicians we should be more direct. If someone had died, she said we should say so to the patient’s family, so there was no doubt as to what had occurred. She used the example of a Doctor in ED saying to a patient’s wife – he had gone ahead of her in an ambulance – that her husband ‘didn’t make it!’ to which she replied, ‘Isn’t he here yet then?’ The Social Worker then apparently said to her, something along the lines of ‘No, what the doctor is saying is that unfortunately, your husband has died.’

On the surface of it, in this instance I can somewhat see her point. However, I argued that we need to put ourselves where the person is who is receiving the message we are trying to deliver. For me, if saying someone has ‘passed away’ feels gentler and more palatable for the person receiving the message, then I see no harm in it. For myself, having lost my son just over 2 years ago due to an undiagnosed heart condition, I find myself not being comfortable with saying, ‘My son has died.’ I very much prefer to use the term that he has ‘passed away’. Saying he has died feels harsh and confronting, even for a Social Worker like me. I know that is what has happened, but I need to use the words that are right for me.

My colleague was adamant that we should be to the point and use the word ‘died’ so there is no risk of misconstruing. That as Clinicians it is the professional way to deliver that message. I’m afraid I found I couldn’t agree with her. In fact, as I didn’t have the energy to use my own preference as an example as related to my son, I just got up and left the room.

Words have power. They can give power and they can take it away. For me, I always try to ensure I ask the people I work with what they are comfortable with. Do I call them Mr or Mrs? Do I call them by their full name or a shortened version, or indeed another name completely that they feel more comfortable with? How do they like to receive information? Written or spoken? How much or how little information do they need? What do they want to know?

It’s like my use of the term Parkies. For some this may sound childish, but for me it is a nickname for something that is now my constant companion. It almost sounds friendly, rather than the formal – clinical – name of Parkinson’s. People may have various nicknames for this condition that is used within the family. They may prefer that others use these names as well, or that they are asked how they like to refer to it.

I endeavour to use words that mirror the words that my patients and their Whanau use. If they are more formal in their speech, I will try to match that. If they are more relaxed in their use of language I will use that. If they use the odd swear word, I’m OK with that too! Many times I have met with patients who are struggling with a stroke or other new diagnosis. If I go to see them and they look grumpy, or sad, or any other emotion, I will try my best to acknowledge it. If for example they look angry when I walk in – depending on what type of language we usually use together – I might say, ‘You look pissed off!’ or ‘You look angry!’ or ‘You look upset!’ I often find that in immediately acknowledging these things, it usually diffuses the situation and their mood improves.

When I go to see a health professional myself and am not in the best of moods, I would love for them to do the same for me. To not be afraid to say, ‘Hey Sue, you look a bit sad today, or angry, etc.’ To acknowledge that I might have some not so positive feelings on that day, at that time. It’s a rarity that any health professional I have been to see has actually given me the opportunity to express my real feelings. The usual is ‘how are you today?’ which, as we all know is a throw away remark that we are not actually supposed to answer! I went to a Physio a month or so ago and when I sat down he said, ‘how are you today?’ As a response I promptly said, ‘A bit fragile actually! and burst into tears! Not what he was expecting at all.

For me, I feel that those of us with this condition and those who care for us, must have the opportunity to express themselves and to do that in a way that is comfortable for them. To be as formal or informal in our use of language as we are used to.

Words can give power and words can take it away. Let’s not let our diagnosis take away our words and our ability to choose those words long before it needs to.

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

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