• Reference Number: HEY-1315-2022
• Departments: Nutrition Support
• Last Updated: 31 August 2022

A guide for patients and their families

Introduction

This booklet is for people or carers of people with a life-limiting illness.  It provides practical advice for those who are experiencing difficulties with eating and drinking.

Eating is often a social activity and family or friends may try to help their loved one by providing food.  It is normal when you are unwell to not feel hungry.  It is important that you do not feel that you must eat more to please those close to you, especially if it makes you feel worse.  Instead, focus on making the most of times when your appetite is better and choosing foods that you enjoy.

Your relationship with food

People who are very ill often have a poor appetite.  The treatments and medicines you are taking can affect how you feel about eating.  Feeling sick and having diarrhoea or constipation can stop you from eating.  You may feel too tired to eat, have a sore or dry mouth or throat, or find chewing and swallowing difficult.

It is important to know that a reduced appetite is very common and is not something to worry about.  You may not be able to eat like you used to.  Do not worry if your meals are not balanced.  Eat foods that you find comforting and give you satisfaction.  Eating little and often can be easier than having big meals.

Preparing meals can be hard work at times.  Convenience foods such as ready meals or tinned food can be useful.  Friends and family may like to help by cooking or shopping for you.

Sometimes solid foods are difficult to eat.  You might like to have a nourishing drink instead.  Examples include milkshakes or smoothies made with full cream milk and ice-cream, coffee or hot chocolate made with cream or evaporated milk.

Nutritional supplement drinks are available on prescription and contain extra protein, vitamins and minerals.  Some people may find these useful, however do not feel like you have to take these if you don’t like them.  Discuss with your doctor or dietitian if you would like to try them.

Tips for eating and drinking

If you would like to try adding extra calories to your meals here are a few suggestions:

Coping with common problems

Sometimes symptoms can put you off your food eg feeling sick, taste changes, sore mouth, constipation, pain or anxiety.  Speak to your doctor or nurse as there may be some treatments that can help.  You may also find the following tips helpful:

Feeling sick:

• Try eating dry foods such as toast or crackers
• If cooking smells make you feel sick, eat cold meals or food that can be heated in the microwave
• Avoid strong smelling, greasy or fatty foods
• If you have difficulty using cutlery or with coordination, try ‘finger foods’ such as toast, sandwiches, biscuits, chunks of meat, cheese, vegetables or fruit cut into pieces etc
• It may be beneficial trying to use a coloured plate for a patient with vision problem or dementia as the food stands out from the plate
• When you are not able to cook buy a selection of fresh or frozen ready meals for these times
• Eat small frequent meals – try a small snack between meals and a dessert after lunch and evening meal
• Try not to have drinks just before meals to avoid feeling too full to eat
• Avoid low fat/diet versions of food and drink for example skimmed or semi-skimmed milk, low fat yoghurt, sugar free drinks etc.

Taste changes:

• Try adding lemon juice, chutney, herbs or spices to food
• Fresh fruit and fruit juices can be refreshing
• Try using plastic cutlery if food tastes metallic
• Some people find cold foods taste better than hot foods

When you have been vomiting:

• Ensure to rehydrate
• You can do this every 10-30 minutes during the day and then build up to drinking your normal amount when you are able to
• Continue trying to eat slowly what you normally would when you feel you are ready to.
• Choose bland foods to begin with, such as bread, crackers, plain soups, rice and pasta

Dry or sore mouth:

• Moisten foods with plenty of sauce, gravy or custard
• Choose foods that do not take much chewing eg milk puddings, ice-cream, soups with added cream/cheese
• Try sipping cool or milky drinks

Difficulty chewing or swallowing

People can have difficulty chewing or swallowing for a variety of reasons.  If this is a problem try taking small mouthfuls of soft, moist foods.  Taking painkillers before mealtimes may help you chew and swallow more easily.  If you find that food or drinks make you cough or you are having difficulty swallowing your tablets, speak to your doctor or nurse.

Mouth care

Keeping your mouth and teeth clean can help prevent mouth problems such as dryness, ulcers or infection.  Brush your teeth at least twice a day and use any mouthwashes you have been prescribed.  Rinse your mouth with water throughout the day to keep it moist.  Some people find sucking on ice chips can help sooth a dry mouth.

Where to find more information

There is information on nutrition available on websites for individual conditions eg Alzheimer’s Society, Macmillan, Motor Neurone Association, British Lung Foundation.

If you are still concerned about your eating and drinking, ask your doctor, nurse or health care professional to refer you to a dietitian.

Hull University Teaching Hospitals Dietetics department can be contacted on 01482 674490.

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.