My mother, an intelligent and articulate octogenarian, has recently been diagnosed with cancer. This takes the family into experiences that are indeterminate, unfamiliar and unknown; none of us has a medical or nursing background; we are uncertain what to expect both from the disease itself and from the treatments offered. The NHS and support services have been active — but sometimes less than helpful, and not always inclined to listen.
My mother's initial endoscopy proved a difficult experience, not simply because it is an unpleasant procedure, but because the staff simply didn't listen. My mother is completely deaf in her right ear, and explained this carefully when the nurses told her she would need to lie on her left side during the procedure. Unfortunately, the staff ignored this information and continually spoke to my mother as they carried out the endoscopy, presumably attempting to give instructions and perhaps also offering advice and comfort — my mother had no way of knowing. Unfortunately, the diagnostician hadn't listened either: my mother didn't realize he had spoken to her at all, and she and her GP both had a shock during an appointment the following week when the GP discovered my mother was still unaware that cancer had been detected…
Another issue is the use of euphemisms. My mother has to have a second endoscopy to have a stent fitted. The MacMillan nurse has explained the procedure to my mother and, in a separate conversation, to me; but it wasn't until this morning, when I was attempting to grasp what would happen, and what care would be needed, in the days after the operation, that I finally discovered — and only through dogged questioning — that what the nurse continually referred to as "discomfort" didn't mean "anxiety" or "slight pain", as English dictionaries define the word, but pain at a level requiring prophylactic painkillers. The word "discomfort" implies something on the level of mild, and passing, indigestion; but what is in fact expected is sustained and actual "pain", requiring painkillers to be taken regularly to alleviate, and preferably avoid, it. So why not say so, clearly and unambiguously, instead of using misleading euphemisms that are meaningless to the patient, and thus make the work of the treating practitioners more difficult?
In a similar vein, there is other loaded language to be negotiated. For instance, when the MacMillan nurse says "Ask me anything you want to know", this should not be mistaken for either a general expression of support or a platitude, as it can seem to be. In fact, the sentence means something very specific and very important: "I have information about your condition, but I am not going to offer it to you in case I tell you things you might not want to know or be ready to handle." The problem is that you, whether patient or patient's relation, must work out this translation for yourself — and then work out what information the nurse may have and thus what questions to ask. Whilst the underlying sentiment of "Ask me anything…" is sound, sensible and kind, its construction results in obfuscation, especially for those unused to such cautious and indirect phrasing; and vital questions about proposed or ongoing treatments may thus not be asked at all…
My mother's initial endoscopy proved a difficult experience, not simply because it is an unpleasant procedure, but because the staff simply didn't listen. My mother is completely deaf in her right ear, and explained this carefully when the nurses told her she would need to lie on her left side during the procedure. Unfortunately, the staff ignored this information and continually spoke to my mother as they carried out the endoscopy, presumably attempting to give instructions and perhaps also offering advice and comfort — my mother had no way of knowing. Unfortunately, the diagnostician hadn't listened either: my mother didn't realize he had spoken to her at all, and she and her GP both had a shock during an appointment the following week when the GP discovered my mother was still unaware that cancer had been detected…
Another issue is the use of euphemisms. My mother has to have a second endoscopy to have a stent fitted. The MacMillan nurse has explained the procedure to my mother and, in a separate conversation, to me; but it wasn't until this morning, when I was attempting to grasp what would happen, and what care would be needed, in the days after the operation, that I finally discovered — and only through dogged questioning — that what the nurse continually referred to as "discomfort" didn't mean "anxiety" or "slight pain", as English dictionaries define the word, but pain at a level requiring prophylactic painkillers. The word "discomfort" implies something on the level of mild, and passing, indigestion; but what is in fact expected is sustained and actual "pain", requiring painkillers to be taken regularly to alleviate, and preferably avoid, it. So why not say so, clearly and unambiguously, instead of using misleading euphemisms that are meaningless to the patient, and thus make the work of the treating practitioners more difficult?
In a similar vein, there is other loaded language to be negotiated. For instance, when the MacMillan nurse says "Ask me anything you want to know", this should not be mistaken for either a general expression of support or a platitude, as it can seem to be. In fact, the sentence means something very specific and very important: "I have information about your condition, but I am not going to offer it to you in case I tell you things you might not want to know or be ready to handle." The problem is that you, whether patient or patient's relation, must work out this translation for yourself — and then work out what information the nurse may have and thus what questions to ask. Whilst the underlying sentiment of "Ask me anything…" is sound, sensible and kind, its construction results in obfuscation, especially for those unused to such cautious and indirect phrasing; and vital questions about proposed or ongoing treatments may thus not be asked at all…
No comments:
Post a Comment