People with a learning disability may need extra support when accessing palliative and end of life care. Understanding and considering someone’s individual needs can improve their quality of life. It can also make sure they’re getting the person-centred care they need.
This information is for health and social care professionals. You can use our My Learning form to reflect on how this page has helped with your continuing professional development. Download the form.
Key points
- Treat the person with a learning disability as an individual and an adult, and treat them with dignity and respect.
- Take time to get to know the person’s experiences, needs, worries and preferences.
- Communicate with the person about their illness and how it might progress, adapting your communication to their needs.
- Support the person to make decisions or be involved in decisions about their care.
- Identify who supports the person and who the person wants to include in conversations and decisions.
- Take extra care to assess and manage their symptoms properly.
What is a learning disability?
In the UK, 1 in 50 (2%) people have a learning disability. A learning disability is different for everyone. People with a learning disability may need support to:
- understand new or complicated information
- learn new skills
- interact with other people
- manage daily activities.
It’s important not to make assumptions about someone’s understanding or the support they need. Every person with a learning disability has their own experiences, needs and preferences. You should get to know the individual person and what support they need. No two people with a learning disability are the same.
People may have a mild, moderate, severe, or profound and multiple learning disability (PMLD). The type of learning disability someone has may impact the level of support they need.
A learning disability is sometimes called an intellectual disability.
A learning disability is different from a learning difficulty, for example dyslexia, which does not affect someone’s intellectual ability. A learning disability is also different from autism, although people can have both.
Getting to know the person
Ask questions or communicate in a way that works for the person. It's important to also speak with the people who know them well.
It can help to find out about:
- how they usually like to spend their time
- their likes and dislikes for things such as drinks, food, clothing
- their normal daily routine and how they respond to change
- things that worry them and how to support them
- any faith, spiritual or cultural practices or needs
- their communication needs and preferences
- what they normally do themselves and what they need support with.
The person may have a health and care passport (hospital passport), ‘This is me’ document or ‘one-page profile’ to tell you about them. If they do not have one, you could help them create one. We have shared some examples below.
You could also give them information about yourself so they can get to know you.
Understanding the person’s medical and care needs
As well as your usual questions, it can help to understand about the person’s:
- previous experiences of medical care and how this might influence their thoughts, feelings or behaviour
- concerns or questions
- usual behaviour and what might tell you they are in pain or distress (see Assessing someone’s pain or distress section below)
- preferences for symptom management and what works best for them (see Managing pain and symptoms section below)
- what has helped them in the past – for example, what can help them if they need a blood test
- preferences for place of care – for example, how they may respond to new places and what can help
- understanding of their diagnosis and their prognosis.
It’s important to speak to the people who support the person about these things as well, if appropriate.
If the person has a Lasting Power of Attorney for health and welfare or an advance decision to refuse treatment (Advance Directive), these should be recorded and followed appropriately. The person may have also recorded their wishes in other formats and these should be followed where possible.
Be aware of safeguarding risks
Some people with a learning disability are at risk of abuse or neglect. This is because some people are more dependent on others. And they may not be able to communicate their concerns or protect themselves from abuse. It’s important to be aware of the signs of abuse and act on any concerns you have.
How to give bad news
These communication tips can be used in different situations, like talking about the person’s care, or telling them that they have an illness they will die from.
Before having conversations, check if the person needs to have someone with them who knows them well.
The environment and timing
- Choose a familiar environment where they feel comfortable.
- Think about who should be there – it can help if someone who knows them well is in the room.
- Consider when to speak to them – whether you have enough time set aside, how the conversation fits in their daily routine and what support they can have afterwards.
Starting the conversation
- Ask the person what they already know about their illness or the situation. This can help you to understand what they know and give the most relevant information.
- Ask them what they think might happen if their illness gets worse.
- Give people small amounts of information at a time.
- Ask the person if they want to know more about this.
- Check in on how they are feeling and what they’ve understood from what you’ve said.
How you communicate
- Always speak to the person directly, even if someone else is supporting them.
- Be aware of your body language, facial expressions and tone of voice, as these communicate information too.
- Use clear language – for example say ‘dying’ rather than ‘passing away’. If you’re talking to them about their prognosis and it’s appropriate for them, say 'you will die from the illness' rather than 'you might die'.
- Use familiar words and record these in their healthcare passport. For example, some people may have their own words for their medications.
Continuing the conversation
- Be patient – allow them time to process the information.
- Give the person the opportunity to ask questions straight away and/or at a different time.
- Understand that you might need to have a conversation a few times for them to understand and process what you have told them.
- If the person does not want to know more, respect their choice. You can open up the conversation again a different time if you think they may want to talk.
Different formats
- Find out how they like to get information. For example, listening to a professional or someone they know, watching videos, reading, or using pictures.
- Use objects, books, photos or drawings to help with understanding, if needed. You could look at the Marie Curie easy read booklets, The Victoria and Stuart Project picture cards and guides, or easy on the i images for ideas see Useful resources section).
- Give the person information in their preferred format, so they can look at it afterwards.
You can record their communication needs so other staff can support them too. For example, in their notes or in their hospital passport (see above).
Watch: What is a terminal illness?Watch: What is a terminal illness?
This video uses words that are easy to understand.
Assessing someone’s understanding
You can:
- say that you know it can be a lot of information to take in and you’re here to support them
- ask the person if they have any questions or thoughts about what you’re saying
- ask the person to tell you what you’ve said or what they’ve understood, using their own words if possible
- listen carefully to what they are saying or communicating
- if they just repeat the words you’ve said, ask them what they think that means
- ask their family, support worker or someone else what they think the person has understood.
If someone cannot speak or does not respond to questions, they may still have a good understanding of what you’re saying. It can help to get input from the people who know them well.
Listening to the people who know them well
The person with a learning disability may have family, friends, support workers or other people they are familiar with. These people can:
- support the person to understand information or communicate their needs or wishes
- tell you what is normal for the person and any changes they are noticing
- provide useful information about how the person has presented with symptoms or responded to medications in the past
- help you make decisions that consider the person’s values and preferences, if the person cannot do this themselves.
This can also help you to consider the carers’ support need, and what support is available.
Why it’s important to talk about someone’s illness or prognosis
Everyone should be given the opportunity to have information about their illness and prognosis (how their illness will progress and if they will die from it). Some people will be open and willing to talk about this. This can help them to:
- have a better understanding of their condition and what to expect
- be involved in planning for their future
- be involved in making decisions about their care and treatment
- be more involved in discussions about their symptoms, and making sure they are comfortable.
Some people will have a sense that something is wrong and notice symptoms or changes. They may worry more if they are not told what is happening.
If someone does not want to know about their illness or prognosis
Some people will not want to know about their illness or prognosis. You can ask them gently if they want to know more about their illness or what will happen. It’s important to respect their decision.
You can check in at a different time to see if they want any more information.
If decisions need to be made (for example, on their treatment or place of care), you can still give them the opportunity to be involved in conversations.
What else might stop you telling the person they will die
Some people do not want to talk to a person with a learning disability about dying. They may be afraid of upsetting them or think they will not understand.
But everyone has the right to be given information about their own life and be involved in decisions about themselves. It is normal for anyone to feel upset or need help understanding that their illness is terminal. The important thing is to support them through this.
Sometimes people close to the person may want to protect them from conversations about death and dying. Listen to their concerns and acknowledge these are difficult conversations. Explain that it’s important to support the person and give them the opportunity to talk about their illness, care, treatment and what to expect.
Watch: Talking about death with someone with a learning disabilityWatch: Talking about death with someone with a learning disability
This video explores why open conversations about death are important and helpful. We hear from people who have been bereaved.
Assessing pain and symptoms
Recognising distress or discomfort in someone with learning disabilities can be challenging. Every person will have their own ways of showing or communicating distress. It’s important to identify symptoms early to avoid distress, symptoms progressing or avoidable complications.
Do not assume that someone’s behaviour or distress is because of their learning disability. Some people with a learning disability may not communicate their pain, or have learnt to tolerate or accept pain.
Communication
- Communicate in a way that works for them – for example, use tools such as body maps, hand gestures or images if needed (see Useful resources section).
- If appropriate for them, ask simple questions with ‘yes’ or ‘no’ answers.
- Ask about common symptoms such as breathlessness, tiredness, nausea and constipation, as they may not tell you without being asked.
Understanding their baseline and history
- Understand what is normal for them – for example, their existing symptoms, weight or blood pressure from their last GP health check.
- Find out what is normal for the person in terms of their behaviour or personality, what has changed and what is their normal pain/distress behaviour.
- Understand their history – has this happened before, what was the cause and what helped.
- Ask if they have any sensory processing needs – these may affect their response to different environments, feelings or noises.
Assessment
- Take time to observe the person and assess them thoroughly.
- Be aware of non-verbal signs of distress or pain (see below).
- Be aware that some people with learning disabilities may not show the typical signs of illnesses – for example, symptoms of sepsis can be harder to recognise.
- Ask the people who know them well how they feel the person is doing.
Non-verbal signs of distress or pain
People may show distress by:
- changes in behaviour, like repetitive movements or putting their hands on their head
- changes in mood – for example, having a low mood or anxiety
- being more withdrawn or less active
- groaning or screaming
- refusing care
- being irritable, restless, angry or violent
- changes to appetite or sleep
- shallow breathing or shortness of breath
- higher heart rate or blood pressure than usual
- laughing when they do not normally laugh.
The person’s family, friends or support workers will often be able to tell you more about what is normal for the person, and their usual response to distress or pain.
Assessment tools
Be aware that some people will not be able to respond to tools like pain scales or verbally describing their pain. Some people may respond to visual scales instead.
Some organisations use a disability distress assessment tool (DisDAT). This lists someone’s appearance, vocal signs, habits and postures when they’re content and when they’re distressed. Keep a copy in the person’s care plan and share it between professionals involved in their care.
Managing pain and symptoms
It’s important to find out people’s medication needs and preferences. For example, some people with a learning disability may:
- be afraid of needles
- be distressed by having something attached to them (for example, a syringe driver or oxygen mask)
- find it difficult to swallow tablets.
It’s important to explain to the person about why something is needed, so they can make an informed decision. You can look into and present alternatives where possible.
You can help by allowing more time when giving medicines. Give yourself enough time to communicate, and to listen to the person’s questions or fears. Explain what a medicine is and what it is for.
It can help to prepare the person in advance where possible, using visual aids if helpful. The Victoria and Stuart Project’s When I’m ill cards include pictures of medicines, an injection, a syringe driver and other equipment.
Watch: What is a syringe driver?Watch: What is a syringe driver?
This video uses words that are easy to understand and addresses fear of needles.
Making decisions
Some people with a learning disability need help to make decisions, and to let others know what they want. There are things you can do to support them to make decisions for themselves. And to be involved in decisions about their current and future care. If someone does not want to be involved in making decisions, you can ask them who they want to be involved.
Helping someone make decisions
You can support a person to make decisions in the following ways:
- Provide all the relevant information the person needs – if there are choices, make sure you give information about these in a balanced way.
- Explain the information in a way that's easy for them to understand, using their preferred formats and communication methods see Useful resources section).
- Use tools like The Victoria and Stuart Project toolkit to explore people’s views and thoughts (see link above).
- Ask for help with communication if needed, for example from family, a support worker or learning disability nurse.
- See if there are times of day or places where they might feel more comfortable and able to understand information better.
- Check if the person wants someone else with them, to help them make the decision and to communicate this.
Some people with a learning disability are dependent on people around them and may want them to make decisions. It’s important to make sure the person with a learning disability can give their views openly and has support to make the best decision for themselves.
Recording decisions
Help the person record their wishes for their care in a way and format that makes sense to them. This may be in an advance care plan, future care plan or anticipatory care plan. With the person’s consent, share any plans with people close to them, like family members, carers or an advocate.
If someone is unable to make decisions
If a person cannot make decisions for themselves, this is known as lacking mental capacity.
People with a learning disability do not automatically lack capacity. Many people with a learning disability will be able to make decisions for themselves with the right support. It’s important to think carefully about how you can help the person to be involved in decisions about their care.
There are laws in place to protect the rights of people who lack mental capacity. Any decisions made for someone else should be made by someone who holds a valid Power of Attorney, or as a best interests decision.
Useful resources
- Marie Curie Easy Reads, photo book and videos for people with a learning disability
- Palliative Care for People with Learning Disabilities (PCPLD) Network
- NHS Guidance – Delivering high quality end of life care for people who have a learning disability
- Victoria and Stuart toolkit
- Easy on the i images