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How it feels to be nil by mouth

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VOL: 96, ISSUE: 46, PAGE NO: 44

Patricia Cronin, MSc, BSc, RN, RNT, is lecturer, City University, St Bartholomew School of Nursing and Midwifery, London

Lack of understanding of the patient experience occurs when the nurse and the patient are contextually distant. The greater the distance between them, the greater the problems of interpretation and understanding. When patients are designated nil-by-mouth for a long time nurses may not understand their experiences, to the potential detriment of patients. Here they explain in their own words what it feel like to be designated nil by mouth.

Life without food

’My mouth is dry, my throat feels like sandpaper, my tongue as if coated in fur and my lips continually stick together. I lick them but there is no moisture on my tongue and they get worse. I constantly run my tongue over my teeth to try to take away what feels like a layer of grime coating them. I brush my teeth and use the mouthwash obsessively, hoping, hoping all the time that it will take away the feeling, the sheer physical discomfort.

’The need to swallow fluid overwhelms me and persuades me to let a little of the water with which I am brushing my teeth trickle down the back of my throat. My throat is eased and for a few seconds I feel good. But then the craving comes back.

‘I don’t feel hungry: total parenteral nutrition takes care of that. It is not how I thought it would be. When I tell people I’m not allowed to eat or drink, they often reply: ’Oh, you must be starving.’ But I’m not. I long for the taste of food, the taste of a drink, the action of eating. When I sleep, I dream of all my favourite foods - I can almost taste them. Then I wake up to the nightmare reality.

’I never knew, never thought about what food and drink meant to me. I took it as given: it is normal to be able to eat and drink. Who seriously thinks about not being able to eat or drink? As far as I knew, if you didn’t or couldn’t eat or drink you died. It is unimaginable to consider that you can live without eating, but it has become my reality. My body failed. It failed to do what I believe to be one of its most basic functions. I have lost control of my body through its failure. I look at it objectively and feel it no longer belongs to me. I don’t know how to get it back.

’I wake up or get woken up each morning and the day stretches endlessly before me. Days become fused together so that time becomes meaningless. There is nothing to break the monotony. There are routines in the hospital of which I am a part but I am excluded from the greatest routine of all: eating.

‘Exclusion is confirmed by the big sign reading ‘NIL BY MOUTH’. Nil by mouth is an indication of my status, and in the ward pecking order I am at the bottom. I don’t qualify to eat. That sign tells people and staff to stay away at mealtimes. I want to scream at them: ‘Ask me how this makes me feel.’ But I don’t, and they don’t ask.’

An uncommon experience

’How can I explain that I want to eat, that I long for the taste of food and drink when I’m told I am lucky and should be grateful to be alive? So many people around me, near me, die. In this grand scheme, my feelings seem unimportant. Being nil by mouth in hospital is not significant. Many people have to forego eating and drinking for the duration of a treatment. But I have been and will be nil by mouth for such a long time, if not forever. To me that makes it different, significant. Sometimes I don’t feel lucky.

‘I sometimes hear myself pleading with the doctors and nurses to let me suck a sweet or chew some gum. The answer is always: ‘No, you are nil by mouth.’ ’But,’ I ask, ‘what harm can it do?’ The answer never satisfies. Sometimes I play with the idea of disobeying the sign. ‘Take the risk,’ a little voice whispers. ‘What can happen?’ I might feel sick, I might vomit and the pain may come back. Is it worth it? The longer I am without food or drink, the more cut off I feel. The horror of what I have become overwhelms me. I am a freak. I want my old life back.

’I tell myself that I must learn to deal with it. I try to shut it out and occupy myself with other things. I switch on the television, read a magazine, but they are full of adverts for every conceivable kind of food and drink. At times I become fixated. I let my imagination take me where I can almost experience the taste. I gaze longingly at the television or read the recipes in a magazine over and over again. At other times I switch off, throw the magazine away, try to block it out, but it seems there is no escape.

‘The food trolley trundles into the ward again. The smell is overwhelming and makes my mouth water. When I can see people eating I watch their every mouthful, I subconsciously chew with them. They complain about how awful the food is and don’t eat it. I see the food being taken away again and the despair returns. I would eat it. I would eat anything. I watch a nurse chewing a sweet or walking the ward with a steaming cup of coffee or tea. Staff call to each other: ’Time for coffee’, ‘Time for lunch’ or ‘Go for a break, you must be hungry.’ Chocolates sit on the desk - there always seems to be chocolates.

’At night, in the dim light, I watch the night staff eating their sandwiches and chocolate, crunching on their crisps and drinking their drinks. Their eating is sometimes audible in the silence. I drift off to sleep with visions of the food floating by.

’Next morning the hospital shop trolley makes its regular trip, creaking and groaning with the weight of drinks, chocolates, biscuits and sweets. Sometimes the women ask me if I want to buy anything, then they see the sign and apologise. Their faux pas embarrasses them. Visitors come and go, bringing gifts of food or drink. My visitors don’t bring anything. I can feel their discomfort, I can sometimes see their hunger but they don’t want to mention food for fear of upsetting me. Life seems to be an endless round of mealtimes.

’I now realise our time is measured by the meal just gone or the one to come. Our whole society shares a common perception of breakfast, lunch and dinner. Even our working day is governed by the recognised need to eat and drink.

‘I still hope for a future in which I can obtain my nutrition from food and drink. I hope that my body will not ultimately let me down. I’ve had my suffering, paid the price. This hope prevents me from having to think about whether my current existence could be my future.’

- The second article in this two-part series will be published in the NTplus Nutrition supplement on December 7.

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