End of Life - Eating and drinking towards the end of life

This leaflet may be helpful for family/friends/carers who are unfamiliar with eating and drinking towards the end of life.

• When someone is approaching the end of their life, eating and drinking should be for comfort and pleasure. If your loved one is requesting oral intake and is awake enough, they should continue to be offered food and drink
• When a person is approaching the end of their life, the need to eat and drink as they normally would, often reduces. Knowing what to expect may help to relieve some of their anxieties
• Someone who is dying may become very sleepy and spend most or all day in bed resting and sleeping. Periods of being awake may reduce and eventually the person may be deeply asleep all the time. The need for food and drink diminishes as the body uses less energy
• This digestive system slows significantly, making it harder to process food
• Patients approaching the end of their life generally do not experience hunger, and those who do, need only small amounts of food to alleviate symptoms
• The body wants to save energy that it normally spends on eating and drinking for other major bodily functions
• It is important to know that most people do not feel hungry or thirsty, a bit like when you are unwell and don’t feel like eating or drinking. It is not known to cause the person any distress
• It can be distressing for loved ones to see the person not eating or drinking. It is natural to want to nurture with food and drink
• Tempting with favourite flavours and gentle encouragement can help. It is important not to force food and fluids as this may cause distressing issues such as nausea, vomiting, reflux and oedema (a build-up of fluid in the body which causes the affected tissue to become swollen), which can cause discomfort

Hydration

• For a person who is approaching the end of their life due to an irreversible condition, nutritional needs or requirements will not be their main considerations
• Comfort is the most important aspect when consuming food and fluid
• Instead of asking ‘How can we make them eat?’ ask What would they like to eat?
• It’s essential to consider quality of life and whether they are enjoying eating and drinking
• Don’t worry about a balanced diet. Enjoyment and comfort are the most important things
• Relax any therapeutic diets such as a diet for high cholesterol or diabetes

Practical Tips

• If the person is alert and able to respond to you, encourage and support them by sitting them upright to comfortably eat. If the person is not able to respond to you, they are not alert and it would be very harmful to give them food or drink
• Provide company – hold their hand, talk to them, watch TV together and enjoy the social aspects of eating
• Consider softer, moist foods such as mousses, ice cream or yoghurts
• Offer small, single sips from an open cup. If they are struggling with this, small amounts on a teaspoon might be easier to manage than big sips
• Offer food in small amounts on a teaspoon, rather than an overfilled large spoon
• Your loved one may find it difficult to feed themselves. You can assist by guiding their hand to their mouth, or fully support them
• Your loved one might be quite tired, so give extra time for chewing and swallowing. Ensure their mouth is clear before offering further teaspoons/sips. They might need to do an extra swallow to clear all the food and drink

Artificial food and fluids

• At the end of life, artificial nutrition and hydration may offer some comfort in certain situations, but it can also cause discomfort, fluid overload, or other complications. The decision to start, continue, or stop it depends on the person’s condition, goals of care, and how likely it is to help more than harm. The care team will always consider both the potential benefits and burdens when making this decision with your loved one and the family

Food Tips

• Eat little and often – small amounts more frequently
• Keep portions small and don’t overwhelm with a large plate full/spoonful. Use a smaller plate
• Finger foods may allow them to feed themselves
• Try their favourite foods
• Try foods with many different flavours to stimulate taste and appetite
• Allow them to signal when they are feeling like eating and when they have had enough
• Try high calorie snacks – see list below
• Ideas include:
  ○    Ice cream/sorbet/ice lollies
  ○    Fruit
  ○    Jelly
  ○    Soft fruit in jelly/juice
  ○    Yogurt/lassi
  ○    Rice pudding/custard pots
  ○    Soup
  ○    Sandwiches with soft fillings
  ○    Smooth curry with moist rice
  ○    Porridge
  ○    Smooth and moist dahl

Drink Tips

• Frequent mouth care can prevent thirst, even if they cannot drink very much
• Use a small spray bottle to mist the mouth with water
• Try small ice lollies instead of large drinks
• Use adapted cups if more comfortable
• Homemade nourishing drinks can provide comfort and enjoyment – see nourishing milk recipe on next page
• New prescribing of nutritional supplements is not indicated in these late stages. If the patient already has these prescribed and is enjoying taking them, it is fine to continue. Do not force them
• Ideas for nourishing drinks include:
  ○    Flavoured milk
  ○    Milky tea/coffee
  ○    Hot chocolate
  ○    Malted milk drink
  ○    Squash
  ○    Fruit juice

Nourishing Milk Recipe

1 pint of full fat milk
4-5 tablespoons of skimmed milk powder

Method

1. Mix the milk powder to a small volume of the milk to form a paste
2. Add the rest of milk and mix Drink on its own or add flavourings

Add wherever milk is used e.g. hot drinks, soup, mashed potato, milk puddings

Swallowing Difficulties

• Often people coming to the end of their life have trouble swallowing. They might cough and there could be a risk of food and drink going down the wrong way into their airway
• If they have already been given advice regarding their eating and drinking by Speech and Language Therapist, please continue to follow this advice if they are comfortable and this is not causing distress
• If your loved one is coughing when eating and drinking, encourage them to take a break and try again another time. Remember – eating and drinking at this time, is for pleasure and quality of life
• If the person seems really distressed by oral intake, speak to the patient's doctor or nurse and they can contact the Speech and Language Therapy team

Nausea or Vomiting

• Provide bland foods - avoid highly flavoured or spiced foods
• Avoid cooking smells and strong-smelling food and drinks
• Avoid other strong smells or odours
• Slightly cooled foods as opposed to piping hot foods have less smell but be aware of food safety principles
• Eat at a time when not feeling nauseous
• Speak to a doctor or specialist nurse to see if anti-sickness medication is suitable

Altered taste

• Ensure good oral hygiene with frequent mouthcare. Ask your health care professional to show you how to provide effective mouth care and what products to use
• Test out new flavours, spices, and herbs
• Avoid strong smelling foods
• Using plastic utensils if normal utensils give a metallic taste

Mouth Care

• Keep the mouth clean and moist
• Try juice or other cold unsweetened drinks
• Offer ice cubes/ice lollies
• Chewing gum or sweets may help stimulate saliva if alert with no choking risks
• Use a soft toothbrush and gently brush the tongue to avoid a coating
• Oral moisturising gel can help keep the mouth and lips moist. Gel may need to be reapplied every 30-60 minutes to maintain comfort. Some oral gels need to be removed before a new layer is applied. Please ask your healthcare provider for how to use the product you have been given.
• Use an approved small wet sponge to help moisten the mouth. If you are using sponges, you can dip these into a flavoured drink, squeeze off the excess liquid and use this to wipe around their mouth. Only use sponges which have been given to you by a nurse or relevant health professional. Sponges are single use items.
• If your loved one is in hospital, you can ask a member of staff for a mouthcare pack.
• If your loved one is at home, mouthcare equipment can be provided by their care home, GP, district nurse or palliative care nurse

Remember

• Is eating and drinking:
  -    Comforting/enjoyable?
  -    Going to improve quality of life/manage symptoms?
  -    Rushed?
• Are they positioned well and the environment comfortable?
• Are adapted cutlery or cups needed?
• Is extra mouth care needed?

Always keep the patient’s wishes at heart.

Useful contacts

The Palliative Care team are really helpful for providing support. They can be contacted on:
Fairfield - 0161 778 2679
Salford - 0161 206 4609
Oldham - 0161 778 5918
Rochdale - 01706 752360

References used for this leaflet/useful resources:

Marie Curie – https://www.mariecurie.org.uk/professionals/ palliative-care-knowledge-zone/symptom-control/hydration- nutrition

Macmillan - https://cdn.macmillan.org.uk/dfsmedia/ 1a6f23537f7f4519bb0cf14c45b2a629/1633-source/ten-tips- nutrition-at-end-of-life-tcm9-300211?
_ga=2.241309126.533939065.1657484325-1457355536.165748432 5

Mouth care matters - https://mouthcarematters.hee.nhs.uk/links- resources/mouth-care-matters-resources-2/

BDA - https://patientwebinars.co.uk/wp-content/uploads/2020/05/ BDA-End-of-life-nutrition-300320-v1.pdf

British Geriatrics Society - https://www.bgs.org.uk/resources/end- of-life-care-in-frailty-nutrition