Palliative care for people with learning disabilities

People with learning disabilities often have additional needs in palliative and end of life care. Understanding and considering these needs when providing care, can improve people's quality of life. It can also make sure they're getting the person-centred care they need.

What is a learning disability?

In the UK, 1 in 50 people have a learning disability. A learning disability affects the way someone understands information, and how they communicate. They may need support to:

• understand new or complicated information
• learn new skills
• interact with other people
• manage daily activities.

A learning disability is sometimes called an intellectual disability.

Types of learning disability

Learning disabilities can be mild, moderate, severe or profound. Someone with a mild learning disability might be able to do most everyday activities. But they may need support with tasks like managing finances or filling out forms. Someone with a severe or profound learning disability, will need more support with things like moving around, personal care and communication.

A profound and multiple learning disability (PMLD) is when someone has a severe learning disability and other disabilities. Someone with a PMLD might have difficulties seeing, hearing, speaking, moving, and communicating.

Causes of learning disabilities

Learning disabilities may be caused by problems with brain development before, during, or after birth, but sometimes the cause is unknown.

Learning difficulties and autism

A learning disability is different from a learning difficulty, for example dyslexia, which does not affect intellect.

Autism is not a learning disability. Around 4 in 10 autistic people also have a learning disability.

Palliative and end of life care needs for people with learning disabilities

As well as common palliative care needs such as pain management, spiritual, and emotional needs, people with learning disabilities often face additional challenges.

They may:

• have more complicated physical and mental health problems
• be more likely to be vulnerable and socially isolated
• have difficulty accessing health and social care
• be diagnosed with a terminal illness at a later stage, giving them a poorer prognosis
• have a higher risk of dementia, and people with Down's syndrome are more likely to develop dementia at a younger age than the general population
• find it difficult to understand information about their health and treatment
• find it hard to communicate how their symptoms are affecting them
• struggle to express their wishes about their care.

People with learning disabilities are more likely to have unidentified health needs, making it harder to recognise when they're approaching the end of their life. This means they may have less time to plan and get support.

Supporting someone with learning disabilities

People with learning disabilities have their own experiences, needs and preferences – each patient should be treated as an individual. It's important not to make assumptions about the care people might need because of their learning disability. Always treat them with dignity and respect.

You should find out:

• how patients prefer to communicate
• if they have care needs related to their faith or culture
• what they do and do not like
• if they have any allergies to food or medication
• what health conditions they have
• what medication they're taking
• where they'd like to be cared for at the end of life
• who they'd like to be with them at the end of life
• if they have any pets and if they'd like them to be close by at the end of life
• if they have anyone that supports with key areas of their care including decision making or appointments, such as a Lasting Power of Attorney or an advocate.

You could also find out if the patient has a sensory processing disorder, which is a condition that affects the way someone processes sensory information. They might respond in unexpected ways – for example they may scream when they hear a noise, or say that someone touching their arm lightly felt painful. It can help to know this, so you can understand the patient's sensory preferences and sensitivities.

Some patients may have this information recorded in a booklet called a hospital or healthcare passport.

Communication

People with learning disabilities might communicate in different ways. For example, they may:

• use easy read information materials
• need information explained slowly and clearly
• use touch, gestures, body language or facial expressions to communicate
• use a communication aid – these can include things like picture boards or technology like an app on an electronic device.

Tips on communicating

When you're communicating with someone with a learning disability, you might need to consider different things:

• Learn how someone takes in information and how they express themselves.
• Find out if they need support to communicate, and include people who know them well such as family members, health and social care staff and an advocate if they have one.
• Take time to establish a relationship with the patient and the people close to them.
• Avoid unclear language – for example say 'dying' rather than 'passing away'.
• Use familiar and preferred words and record these in their healthcare passport. For example, some patients may have their own words for their medications.
• Be aware of your body language, facial expressions and tone of voice – these communicate information too.
• Check how much they understand by asking them to tell you, using their own words if possible.
• Be patient – allow as much time as they need to process information, and to ask and answer questions.
• Repeat the information as often as they need.
• Use objects, books, photos or drawings to supplement the information.
• Have important discussions in a familiar environment where they feel comfortable.
• Keep to familiar routines and environments – this can help with communication.

Share our easy read booklets for people with learning disabilities who have a terminal illness, and for people caring for someone with a terminal illness.

Read more about communication difficulties.

Identifying distress

Recognising distress or discomfort in someone with learning disabilities can be challenging. Every patient will have their own ways of showing distress. Some patients will tell you that they need help. Others may need to use communication aids such as body maps, to locate pain.

Distress can be spiritual, emotional or physical, like pain.

Signs of distress

People with a learning disability might show distress by:

• changes in behaviour, like repetitive movements or putting their hands on their head
• being more withdrawn and quiet
• being less active
• groaning or screaming
• refusing care
• being irritable or restless
• being angry or violent
• sleeping more or less than usual
• loss of appetite or refusing food
• shallow breathing or shortness of breath
• laughing when it's out of character.

If someone shows any of these signs, it's important not to assume it's because of their learning disability. Find out what they're trying to tell you. Those close to the patient can help you understand their signs of distress.

Tools to identify distress

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 patient's care plan and share it between professionals involved in their care.

See an example of a disability distress assessment tool from St Oswald's Hospice.  

You may also find the Wong-Baker FACES Scale useful to help patients communicate about their pain.  

Making decisions

People with learning disabilities often need help to make their own decisions, and to let others know what they want to happen. They need reliable information in a format they can understand, so they can make choices about their care.

It's important to do all you can, to support someone with a learning disability to make decisions for themselves.

Helping someone make decisions

You can support a patient to make decisions in the following ways:

• Provide all the relevant information patients need – 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, for example by using simple language or visual aids.
• Use the patient's preferred communication method.
• Ask for help with communication if needed, for example from family or a speech and language therapist.
• See if there are times of day or places where they might feel more comfortable and able to understand information better.
• Check if the patient wants someone else with them, to help them make the decision and to communicate this.

Recording decisions

Help the patient record their wishes for their care in an advance care plan. You could also involve people close to them, like family members, carers or an advocate.

Find out more about advance care planning.

MacIntyre have Easy Read forms for people with learning disabilties, to help them plan their care and record their wishes: My plan for before I die   and My plan for after I die.  

Talking about death and dying

Sometimes people close to the patient 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 patient by providing them with information about their condition. And that the patient should be supported to make decisions if they want to.

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. There are laws in place to protect the rights of people who lack mental capacity, and any decisions made for them must be in their best interests.

Read more about mental capacity.

Coronavirus challenges

The coronavirus pandemic may cause extra challenges for people with learning disabilities:

• People with learning disabilities often have health problems that can make them more vulnerable to coronavirus.
• Changes in routine or healthcare staff can affect patients' emotional and mental wellbeing.
• Patients may find it difficult to understand why they cannot take part in their usual activities or see their friends.
• Personal protective equipment (PPE), such as masks, can be frightening and distressing.

There are things you can do to support people with learning disabilities during the coronavirus pandemic:

• Read our information on how to make PPE less alarming.
• Work with those close to the patient to find the best ways to reassure them when distressed.
• Try to explain why things are changing in simple and familiar terms, and tell them what will remain normal.
• Share accessible resources on coronavirus – the Palliative Care for People with Learning Disabilities (PCPLD) Network has a list of resources   and the NHS has produced some videos about the coronavirus vaccine.  

Support from professionals and services

The patient should have support from:

• a specialist learning disability team
• a palliative care team
• a speech and language therapist, who can help with communication if needed
• an advocate, who can help make sure their voice is being heard if needed.

People with learning disabilities should have equal access to all services they can benefit from. Provide patients or their carers with information on local services.

These might include the following:

• Spiritual care – support from a professional such as a chaplain, to help them reflect on life, death and help them to find meaning and hope.
• Hospice day therapy – therapeutic and creative activities with people in similar situations.
• Complementary therapies – these can help with symptoms like pain, stress and anxiety.

Share our list of useful organisations to help people find local services.

Providing bereavement support

Everyone with a learning disability responds to loss in their own way and can have different levels of understanding. It's important to acknowledge their feelings and emotions, and there are lots of ways you can support them:

• Be honest about what has happened.
• Avoid unclear language – for example say 'dying' rather than 'passing away'.
• Allow enough time to communicate in the patient's preferred way.
• Be prepared to have several conversations, to give them time to understand and accept what has happened.
• Allow them time to come to terms with their feelings.
• Encourage them to remember happy times with the person who has died. You or someone close to the patient could help them make a memory box or photograph album.
• Do not be afraid to show your own feelings. This may help them express how they feel.
• Check whether they need extra support while they adapt to life without the person who died.
• Be aware they may have a delayed reaction to their loss or show their grief in unexpected ways.
• Support them to go to the funeral if they would like to.

Share our easy read booklet on feelings you might have when someone dies.

Useful resources

Palliative Care for People with Learning Disabilities (PCPLD) Network  

Mencap – charity for people with learning disabilities with information for healthcare professionals  

NHS Guidance – Delivering high quality end of life care for people who have a learning disability  

St Oswald's Hospice – disability distress assessment tools (DisDAT)  

Social Care Institute for Excellence (SCIE) – COVID-19 guide for care staff supporting adults with learning disabilities or autistic adults  

NHS – Mental Capacity Act (England & Wales)  

Department of Health – Mental Capacity Act (Northern Ireland)  

Mental Welfare Commission for Scotland – Adults with Incapacity Act