As someone approaches the end of life, a lot of changes happen to their eating and drinking.

This is a normal and natural part of the dying process as the body slows down. This can be distressing for carers/family especially when loved ones stop eating and drinking like before and they have always taken a lot of pleasure from food.

Here are some of the things you may notice happening:

• Eating and drinking much less. Some people may be able to take small amounts of food and drink, while others may only be able to take sips of drink. Some may not eat and drink anything at all. This can be worrying for families and carers but is very normal as the body slows down - most people at the end of life are no longer feeling hungry or thirsty.
• Refusing food and drinks more often. This may be shown by their body language, for example turning their head away or not responding to a cup or spoon.
• Needing more help from others to feed them.
• Falling asleep during eating or drinking.
• Holding food and drink in the mouth for a long time. It may take a long time to swallow.
• Pouching food in the cheeks rather than swallowing.
• Losing food and drink from the front of the mouth.
• Spitting out food and drinks.
• A dry mouth and tongue.
• Difficulty coping with saliva, for example drooling or thick sticky saliva.
• Coughing during or after food and drink.
• Difficulty swallowing medication.
• Very variable eating and drinking. For example, sometimes they might drink quite well but other times don’t want to drink at all, or they might hold it in their mouth without swallowing.
• Be aware that swallowing might change a lot and very quickly in the last weeks and days of life.

How can family or carers help?

The main aim in end of life care is on making eating and drinking as comfortable and pleasurable as possible and supporting the person’s wishes. At this stage, this is more important than worrying about how much they are eating and drinking or whether anything is going down the wrong way.

The natural decline in appetite and thirst at the end of life limits the person’s ability to increase their food or drink intake. For this reason, specialist advice from a dietitian is not needed and the general advice below should be followed.

It is important to involve the dying person in all choices around eating and drinking if they are able to.

Positioning for eating or drinking

• Sit the person as upright as they can comfortably manage. Swallowing is easier in this position.
• If they are very weak, this might be difficult. If they are not sitting upright, then make sure that their head position is forwards. If their head is tilted back, then food and drink will go down too fast and they might cough or choke.
• Make sure that you are in a comfortable position too, while you are helping to feed them.

Feeding someone

• Offer the person drinks and food only when they are awake and responding to you.
• Offer food and drink ‘little and often’ if they are awake.
• In choosing what to offer, think about their appetite, thirst and what they can manage. They may be tempted by some of their favourite foods and drinks. Even if they only take a small amount, this can still be enjoyable and comforting to them.
• Little tastes for pleasure can be given when a person isn’t able to eat and drink much but still enjoys taste of their favourite flavours, e.g. their favourite cup of tea or dessert.
• Check that their mouth is clean and clear of dried or sticky secretions. If not, then give mouth care (see section below).
• Make sure that they can see the food and drink that you are offering them
• Check if the person can still feed themselves. Encourage them to feed themselves or give them hand over hand support if they need it. If they are able to be involved in moving the cup or spoon to their mouth, it helps their brain and body be ready to swallow.
• Try different cups and spoons to find the best ones for them – for example, small sips from an open cup or teaspoon may be easier than spouts and straws.
• Offer small mouthfuls at a slow pace. Allow time for the person to chew and clear each mouthful.
• Pause between mouthfuls to allow time for a second clearing swallow and for the person to catch their breath.
• You may hear changes to their voice quality or breathing pattern. If this happens encourage them to cough and clear their throat if possible.
• Watch closely for body language which tells you that the person has had enough to eat or drink.
• If they are coughing, then wait until it stops and their breathing is calm before offering more.
• If someone is really struggling to swallow and is coughing a lot or even choking, then it is safer to stop completely. Only offer them what they can comfortably manage to swallow. If they struggle to swallow anything, then it is better to stop giving food and drink and just concentrate on mouth care instead.
• Check their mouth again afterwards to make sure that it is clean and clear. Give mouth care if needed.

Managing refusal of food and drink

• Always talk to the person first to rouse them and explain what you have brought them.
• If they have their eyes closed, hold the food or drink below their nose so they can smell it and/or feel the heat of it. This may help them be more aware and get them ready to swallow.
• Try offering an empty spoon: hold the empty spoon to the person’s lips, and place it gently in their mouth if this is possible. This might then prompt them to take some food or drink.
• If someone does not open their mouth when presented with a cup/spoon, try placing a tiny amount of a moist food on their lips (you can do this with a teaspoon). Try different flavoured foods (e.g. sweet options like chocolate mousse and fruit yoghurt often work well).
• If they still do not respond then stop. You can try offering food and drink again later.
• Offer mouth care to ensure their mouth is moist and comfortable.
• If they tend to spit out food, it might be helpful to protect their clothing with an apron.

Food and drink textures

• Some foods and drinks are easier to manage and swallow than others.
• Think about which textures of food and drink they usually manage best and start from there.
• Moist, well mashed foods are much easier to chew and swallow. However, the person may still enjoy some more solid foods such as a biscuit or cake. Be led by them and what they would like and can manage.
• If mashed foods are still difficult to manage, then try smooth blended foods.
• Try offering food and drink flavours that the person has always enjoyed in the past.
• If someone is showing difficulties with thin drinks, then naturally thick drinks such as smoothies and milkshakes can be more comfortable to swallow.
• Specific eating and drinking guidelines around diet/fluid modification may no longer be appropriate. If the person still wants sips of a thin drink like water or tea, then this should be considered if it makes them more comfortable
• If they are finding it hard to swallow medication, then ask the GP to review what they are taking. They can also consider prescribing medication in a different form, e.g. a liquid.

Mouth care

• Keeping a person’s mouth clean and moist is really important in making them comfortable at the end of life, especially if they are not eating or drinking very much.
• Try a small, soft child’s toothbrush rather than their usual one, if it is uncomfortable.
• If possible, tilt the person’s head forwards slightly.
• Use a small amount of toothpaste; low or non-foaming toothpastes are available.
• Gently brush their teeth, palate, gums and tongue as tolerated.
• If someone wears dentures, clean their dentures as well as their mouth.
• If someone’s mouth is very dry then offer small sips of drinks frequently if they can manage this. You can also ask the GP to prescribe a saliva substitute spray or gel to help keep their mouth comfortable.
• Keep their lips moist with a lip balm to avoid cracking.
• There is a useful guide and video about giving mouth care on the website for the Hospice in the Weald: theinformedguide.org.uk/topic/mouth-care/