Advanced care planning and end of life care guidance and support

This page provides information guidance and sources of support to those in health care who provide or manage palliative care. It is set out to provide information advice and guidance to facilitate consistent care to an individual their family and those providing care before during and after death.

Leeds Palliative Care Network and Healthwatch Leeds carried out a survey of bereaved carers in 2021/2022, which provides useful feedback and well deserved praise for care home staff.

Care Home Recommendations can be found on pages 34 to 42 of the full report External link  

Specialist palliative care community services during COVID-19 pandemic

  • LPCN clinical guidance

    A variety of resources, including symptom management advice in relation to COVID-19, are now available on the Leeds Palliative Care website External link  

    There is also additional advice being added to the Electronic Palliative Care Coordination System, EPaCCS.

  • Covid-19 support line

    A new support and advice service has been across West Yorkshire and Harrogate to help people through grief and loss. The free service, commissioned by West Yorkshire and Harrogate Health and Care Partnership (WY&H HCP), is delivered by West Yorkshire and Harrogate Independent Hospices Consortium, Bradford Bereavement Services Consortium and Leeds Mind.

    The phone number for the telephone support line is 0808 196 3833, a live chat function is available on the website. The service is available 7 days a week, from 8am to 8pm.

    Grief and loss support service External link  

Nutrition Support in End of Life Care

Aim

When a person is approaching end of life the focus of care may change and nutrition support will then centre on quality of life including comfort, symptom relief and enjoyment      

      
Goal

The provision of food and drink should be enjoyable for the patient with a focus on comfort and palliation rather than aiming to achieve a prescribed daily nutritional intake.      

      
Monitoring

Objective measures such as regular weights and food records will not impact on the level of care; therefore it should be considered to omit them.       

      
Consider

Nutritional care should be individualised according to the patients’ disease and stage of their illness and can have physical, social, cultural and emotional aspects. We need to alleviate any pressure on the patient to maintain a normal diet. For some a nourishing diet may be suitable but for others a focus on increasing intake may add to their anxieties and stress.       

      
What can you do to help?

  • Provide reassurance to patients and family that the changes are often a natural response to the illness as the body starts to slow down
  • Manage symptoms related to constipation, pain and depression.
    • Depression and constipation may manifest as disinterest in food or food refusal
    • Oral thrush, poor dentition, dry mouth and sore mouth may cause difficulty eating and lead to anorexia
  • Consider the environment, the meal time experience, the social aspects, smells and the presentation of the food all can have an impact on appetite, intake and quality of life.
  • Offer and encourage the individuals preferred food and drink; however please note that for some people with dementia preferences can change, and some people start to prefer food and drink that they previously disliked. Some people with dementia develop a preference for sweet foods so these may be more appetising than savoury foods.
  • Encourage a little and often approach with food and drink. Many elderly people (with or without dementia) have small appetites, and nutritional needs are more likely to be met with six or so small meals / snacks rather than three bigger meals.
  • Ensure appropriate food and drink is available throughout the day and night so that a person can be encouraged to eat and drink whenever he/she is most alert.
  • If a person with dementia is frequently awake at night consider whether he/she is hungry.
  • Encourage higher calorie foods and drinks. Avoiding high fat and high sugar foods at this stage is unlikely to be beneficial, these foods are often less palatable and may increase the risk of malnutrition.
  • Consider food fortification (e.g. dried milk powder can be added to milk for cereal or drinks, custard, porridge, yogurt, milk puddings, cream soups, mashed potato etc.).
  • People may ask for prescribed nutritional supplements however if a person is unlikely to consistently manage at least two bottles a day, then they are unlikely to derive any significant benefit from them. More importantly these do not contain anything which can’t be found in food, and most people prefer the flavour of ordinary food. Food means so much more to people than simply nutrition, and at the end of life enjoyment of even small amounts of food and fluid is more important than its nutritional content.

      

Palliative Care in Dementia

  • Body position and / or behaviour around meal times may be a factor
  • Offering finger foods may help to maintain independence
  • A person may benefit from assistance with meals and or alteration of frequency and size of meals
  • Hand feeding may help to provide some quality of life for a person through the human contact, social interaction and stimulation it provides.

Nutrition and the Last Days of Life

Most people at the end of life do not experience hunger or thirst and have little interest in food or drink.  The body is slowing down, and if someone eats or drinks more than they really want to it can cause them discomfort. Providing mouth care and small amounts of food and drink for pleasure may be more appropriate.

It’s natural for family and loved ones to be concerned about the effects of reduced food intake or dehydration on the person, who is dying and it may be help to explain that this is expected and a natural part of the dying process.

Other ways we can suggest families may provide comfort and support include;

  • Gentle massage, skin care, music and conversation
  • Keep the person company - talk to them, read to them, watch films together, or simply sit and hold their hand
  • Even when people cannot speak or smile, their need for companionship remains. The person may no longer recognise you, but may still draw comfort from your touch or the sound of your voice

      

What about food and drink?

What about food?

  • Let the person choose if and when they want to eat or drink
  • Don’t worry about providing a balanced diet
  • See below for ideas for small snacks and nutritious drinks

What about drinks?

  • Frequent mouth care (gently brushing teeth with a soft toothbrush) can prevent the person feeling thirsty, even if they cannot drink very much
  • Keep lips moist with lip balm
  • Use a small spray bottle to mist the mouth with water, being careful not to give too much
  • Offer small pieces of ice or small ice lollies instead of drinks

Small snacks

Foods which do not need a lot of chewing may be easier to manage                                                          

Suggestions:                                                          

  • Mini tub of yogurt, dessert or custard
  • Mini ice cream lolly or mini tub of ice cream
  • Small pieces of prepared, soft fruit e.g. mango, melon, grapes, orange segments
  • Favourite sweets or squares of chocolate
  • Small pieces of scone with butter and jam or lemon curd
  • Mini tub of cream cheese or cheese spread – soft bread optional
  • Quarter of a sandwich with a soft filling e.g. egg mayonnaise, tuna mayonnaise, paté
  • Cocktail sausages, mini sausage rolls, mini quiches or mini scotch eggs
  • Squares of cheese
  • A few ‘soft’ crisps such as Quavers or Wotsits

Nutritious drinks

Small cups or glasses may be easier to manage. If the person can only manage half a glass or cup, they may still find it easier to drink from a full cup or glass. This can make swallowing easier because the person does not have to tip their head back as far.                                                          

Sips of citrus flavour drinks may help if the person has a dry mouth.                                                          

Suggestions:                                                          

  • Milkshakes
  • Milky coffee
  • Hot chocolate
  • Malted milk drinks
  • Smoothies
  • Fizzy drinks or fruit squash (try to avoid sugar free, diet and no-added-sugar varieties)
  • Fruit juice

National institute for health and care excellence: advance care planning quick guide

Advance care planning can make the difference between a future where a person makes their own decisions and a future where others do. NICE have produced a short guide External link   for care managers and other staff around supporting individuals and families through the process of developing an advanced care plan.

Leeds Palliative Care Network

Provides information about palliative and end of life care services for adults in Leeds. These services External link    are provided by a group of health and care organisations that work together across the City to support you, your family, friends and carers.

The Helix Centre advance care planning toolkit

The centre have developed a useful document External link   in conjunction with NHS colleagues across the country. The resources takes you through practical things that you can do as a carer for someone who is in their last days and hours of life.




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