End of life care helps people to live as well as possible until they die and to die with dignity.

This means the people providing care and support should ask the individual about their wishes and preferences and take these into account as they plan and work. Individuals should have access to the right support, good advice and clear information.

People have the right to express their wishes about where they would like to receive care and where they want to die. End of life care can be provided at home, in care homes, hospices or hospitals, depending on the individual’s needs and preferences.

There are lots of different ways you can support people to have positive experiences before they die.

Take a look at the cards below to give you some ideas on how you can create positive memories for someone:

It is important that the wishes of the individual are respected even if you do not personally agree with the choices that have been made.

The Care Act 2014 focuses on wellbeing. The key principle is that choices are made by the dying individual. The individual has control over their day to day life, including how end of life care and support are provided. Choice and control are fundamental to the core purpose of adult care and support.

The Care Act guidance aims to  ‘help people to achieve the outcomes that matter to them in their life.’

The National Palliative and End of Life Care Partnership is a group of national organisations with experience of, and responsibility for, end of life care. These public and voluntary services who inspect health and social care services include:

1. Local Authorities
2. National Health Service (NHS)
3. Care Quality Commission (CQC)

The Group sets out six key ambitions they are all working towards that focus on giving an individual choice and control. If you would like to learn more, you can read the national framework for local action in Ambitions for Palliative and End of Life Care.

Choice and control may also be referred to in areas of the UK as:

1. “Personalisation” in England 
2. “Citizen-centred services” in Wales
3. “Self-directed support” in Scotland 
4. “Independence and choice” in Northern Ireland

Care and support workers must be able to demonstrate ways of working that help an individual feel respected and valued throughout the end of life period. There will be lots of ways you can do this.

These are just a few examples of how you can help an individual to feel respected and valued:

Step 1

What would you like to be called?

Always ask someone you meet for the first time how they wish to be referred to and what they would like to be called.

Never call someone “love” or “duck” or “darling”. Some people may find this offensive but they don’t want to challenge it and risk conflict. These terms might be part of your everyday vocabulary but it is NOT appropriate unless you have asked permission first. 

Any deviation from a person’s name should be recorded on the care or support plan.

Step 2

What does your care plan say?

Check the individual’s care plan and ensure any additional information is added.

Step 3

How can I help you?

Don’t make every day decisions for people as they will not feel valued. This means giving them choices in what they wear, what they eat and how they want to look.

If making decisions is difficult for an individual, suggest options and support them to make a decision. Involvement promotes respect and dignity.

Step 4

Would it be ok if?

Respect an individual’s personal space and approach personal care sensitively.

Explain what you want to do and why. 

Always ask for consent before you undertake any activities involving their body. You might be used to seeing people without clothes on but the individual may not be used to revealing themselves.  

Step 5

How are you?

Be friendly, calm and patient.

You might be on a time limit or late to support the next person but for the individual, you are one of the most important people they see.

Step 6

Did you enjoy?

Build trusting relationships by listening to the individual and valuing what they have to say. 

Try to remember personal things they talk about that are important to them so you can build on this conversation when you see them again.

Step 7

They said they wanted to?

Be confident in standing up for the preferences and wishes of the individual, especially if you are challenged by their friends and family.

Step 8

Have you had something to drink?

Supporting people with nutrition and hydration is a critical part of end of life care and must be appropriate to the individual’s needs and preferences. 

Never assume someone has consumed fluids. 

If they are meant to be drinking or eating, always check this is the case. 

Refer to the care plan and record and report anything that changes.

Step 9

How do you feel?

Be mindful of the medication or pain relief an individual may be taking and the effect this may have on their communication and behaviour. 

You should familiarise yourself with their medication and understand normal side effects and be alert for them.

Summary

You may have some other ideas and you may also have conversations with your manager or the individual’s relatives about the different ways you can support the individual to feel respected and valued.