How do you communicate at the end of life?

Find out if they need support to communicate, and include people who know them well. Avoid jargon and unclear language – for example say "dying" instead of "passing away". Find out how they express discomfort or pain. Allow enough time for conversations – be patient and ready to repeat yourself if needed.

mariecurie.org.uk - Communication needs in palliative care | Information for professionals

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Good communication

Good communication helps you connect with patients. It can help you understand what their wishes are, and support them to make informed decisions about their care. Every patient has different communication needs, and these may change throughout their illness. There are some things you can do with every patient to help you communicate:

Getting to know the patient and those close to them

Take time to get to know the patient and how they like to communicate. Establish a relationship with people close to the patient, such as family members, friends and carers.

Find out what the patient already knows.

Making the patient feel comfortable

Introduce yourself with your name and role when you meet a new patient. If someone has confusion or memory problems, you may need to do this each time you see them. If possible, have important discussions in an environment that makes communication easier. This should be a private place that's quiet, calm and without distractions. Make sure you have enough time for the conversation, but be aware they might need a break if they get tired.

Sharing information

Share information in a way the patient can understand. For example, you may need to write words down, use objects or pictures. Check they have understood important information by asking them to repeat what you said, in their own words if possible. Provide written information such as booklets or websites. This means patients can find information in their own time, and have support when you're not there. Tell them why you're there, for example to give medicines, personal care or have a conversation.

Your language and communication skills

Ask open-ended questions, like "How are you feeling?" instead of "Are you feeling better?" Be aware of your body language. Good eye contact and an open posture with arms and legs uncrossed, can make patients feel more at ease.

Use plain language instead of medical jargon.

Avoid unclear language – for example, say "dying" instead of "passing away".

Actively listen to what they're saying, concentrating on what they're telling you, rather than what you might respond with. Check you've understood what they've told you. Be honest if you do not understand something.

Consider ways to make communication easier while wearing PPE (see below).

Find information for patients from Marie Curie.

Illnesses which affect communication

Illnesses that can affect the nerves and muscles we use for speech

These include:

These illnesses can cause difficulty speaking (dysarthria) because the patient is less able to control the muscles used for speech. The illness or its treatment can make the patient's speech difficult to understand.

Conditions that affect the brain and can cause speech problems

These include:

stroke

brain tumour – including primary cancer, metastases (cancer that has spread from the primary site) and benign (non-cancerous) tumours

severe head injury

dementia.

Patients with these conditions may have one or all of the following:

difficulty understanding speech and written information (receptive dysphasia)

difficulty speaking or writing their own thoughts (expressive dysphasia)

problems with reading, listening, speaking, writing and typing.

Supporting patients who have difficulty speaking

If someone has difficulty speaking, there are things you can do to help:

Give them plenty of time to speak.

Avoid interrupting or finishing their sentences for them.

Look at them while they're speaking.

Reduce background noise and any other distractions.

Be honest if you do not understand what they're communicating. It's important not to pretend you understand, as they may find this upsetting or patronising. Check what they meant by asking questions that need a yes or no answer, like "Did you ask me to make you a cup of tea?" Speech and language therapists can assess someone's needs and provide support. They may also give patients communication aids, such as: letter or picture boards, with pictures or symbols the patient can point to

applications (apps) on phones or tablet computers.

The patient's doctor can refer them to a speech and language therapist.

Sensory loss or impairment

A sensory impairment is when one of the senses is not working as it should.

Deafness and hearing loss

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People who are deaf or have hearing loss may communicate by:

lipreading

sign language – for many deaf people, British Sign Language (BSL) is their preferred language

fingerspelling

reading written information.

You can support them by:

finding out how they prefer to communicate

asking your employer how to access sign language interpreters

making sure they can see your face clearly – where possible use clear face masks or visors when using PPE

speaking clearly but try not to exaggerate your mouth movements

speaking at a normal volume – shouting can be uncomfortable for patients wearing hearing aids

checking they understand

If the patient wears a hearing aid, they may still need support with communicating. You can support them by:

checking they're using it

making sure they're using the correct setting

checking the batteries are working.

Hearing aids should be wiped with a soft dry cloth when removed at night – this prevents the build-up of earwax. Some patients may need you to do this for them.

Blindness and sight loss

Patients who are blind or partially sighted may communicate in different ways and need information in other formats. You can support them by:

asking how they prefer to communicate

offering information in other formats, like large print, Braille or audio

letting them know you're there, and who you are, each time you start a conversation

checking they understand and repeating yourself if needed

making sure equipment they need is nearby, like magnifiers or tablets.

Learning disabilities

People with learning disabilities may find it difficult to understand new or complicated information. They may need extra support with reading, writing and understanding information. The level of someone's learning disability will affect how much support they need to communicate.

There are many ways you can support them:

Learn how they like to communicate, for example, they may use a communication aid such as a picture board or app. Find out if they need support to communicate, and include people who know them well. Avoid jargon and unclear language – for example say "dying" instead of "passing away".

Find out how they express discomfort or pain.

Allow enough time for conversations – be patient and ready to repeat yourself if needed. Check they understand by asking them to repeat what you said, using their own words if possible. Ask open-ended questions. For example ask "What questions do you have?" or "Which parts shall I repeat?" instead of "Do you understand?" Learn some symbols and signs in Makaton – a language programme that uses symbols, signs and speech to help people communicate (see resources from The Makaton Charity ). ). Provide information in different formats, such as easy read (see Marie Curie's easy read booklets).

Language

There are things you can do to support patients who speak a different language to you: Learn key words and phrases in the patient's first language – like food, water, toilet or pain – depending on what's most important to them. Use free apps or websites such as Google Translate – be aware these are not always accurate. Find information booklets or support line services in the patient's language. The Marie Curie Support Line has a language service with more than 200 languages. Speak to a trained officer via an interpreter, on. Find out more about the Marie Curie Support Line's language service.

Ask your employer for access to a translation or interpreter service.

For medical appointments and meetings, like making an advance care plan, translation must be done by a professional translator. For informal visits, a trusted colleague, family member or friend could translate. Do not ask children to translate. Respect the patient's dignity and privacy, and be aware of anything they want to keep private from the translator.

Macmillan Cancer Support has leaflets about cancer in other languages.

Emotional distress

Emotional distress is common in people living with a terminal illness. The patient might feel so distressed or anxious, that they're unable to express what they're thinking or feeling. The patient might also feel afraid of being judged, or feel worried they're losing control. There are different ways you can support them: Encourage them to talk about their fears and worries in a calm, private and safe environment. Listening without judgement and being patient is important for this.

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It's important not to try and fix emotional problems. Asking open questions and allowing them to talk freely about how they're feeling, is likely to be more helpful. Help them to feel relaxed. Find out what helps them to relax and try to arrange this – you could speak to people close to the patient for help with this. If someone is too distressed or tired to talk, let them know you can talk at another time. Try not to give too much information at once. Highlight the most important information and arrange another time to talk.

Drowsy or unconscious patients

Patients often become drowsy or unconscious in their last days and hours of life. We do not know how much people hear or understand during this time. You may be able to reassure them by:

talking to them in the way you usually do

encouraging family and friends to talk to them – it's important to sensitively prepare them not to expect a response

playing their favourite music

using touch such as holding hands, when appropriate

being careful what conversations you have around the patient – avoid upsetting topics.

Communicating while wearing personal protective equipment (PPE)

Wearing personal protective equipment (PPE) can make it harder to communicate, and some patients may find it frightening. You could reassure patients and those around them by:

warning them in advance that you'll be wearing PPE

explaining why you need to wear it

wearing a name badge

showing them a photo or video of yourself without PPE

telling them what you're thinking or feeling if it's not clear while you're wearing PPE wearing a clear visor or mask so the person can see your face if they use lip-reading to communicate

writing your name on your visor to help them easily identify you

showing your face through a window before putting on PPE and going inside. If appropriate, you could offer to meet those close to the patient outside without a mask on. This may help to establish a relationship with people, especially when meeting for the first time. Communicating with someone who is not wearing a mask, may be especially helpful for people with a sensory impairment or a learning disability. It's important to make sure you're following your organisation's coronavirus policies as well as the coronavirus rules in your region.

Who to ask for help

You may need help from other professionals to manage communication needs. Speech and language therapists can assess the patient's communication needs and give advice and support on how to manage them. They can also organise communication aids and equipment to help. Ask your employer what translation or interpretation services you can access, and make time to learn how to use them. These services can provide in-person, online or telephone translation for different languages, including British Sign Language (BSL). It's natural to feel anxious about having difficult conversations. You might feel worried about how to support the patient, or how to cope with complicated emotions. It's okay to ask for support. And you may want to build on your communication skills. You could:

attend training to help you develop your skills

learn from past communication with patients by thinking about what went well and what could go better next time talk to your colleagues – they're likely to have had similar experiences and may be able to offer support or advice

ask your manager for support.

Useful resources

NICE Clinical Knowledge Summaries: Palliative care – Communication

Royal College of Nursing, First Steps for health care assistants: Communication

Alzheimer's Society: Communicating and dementia

Mencap: Communicating with people with a learning disability

Motor Neurone Disease Association: Information for professionals

MS society: Managing speech problems

Parkinson's UK: Speech and communication problems

Sense: Information and advice for communication with people with additional needs

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mariecurie.org.uk - Communication needs in palliative care | Information for professionals

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