Caring for someone with multiple sclerosis towards the end of life

People with multiple sclerosis (MS) may experience bladder and bowel problems, as well as difficulties or changes in moving, breathing, swallowing and communicating. Towards the end of life, these symptoms may become more severe. This information talks about knowing when a person with MS is near the end of life and how you can support them.

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Key points

• Multiple sclerosis (MS) is a condition that affects the nerves in the brain and spinal cord. It causes a range of symptoms, which can include problems with vision, thinking, balance and movement.
• MS is a lifelong condition, but treatment can slow its progress and help people manage their symptoms.
• Towards the end of life, a person with MS might have symptoms more often or more severely. They might have more than one symptom at the same time. It is likely they will have stopped taking medications to slow down their disease and their condition will get progressively worse.
• It is rare for a person with MS to die from the condition itself. People with MS usually die from complications of their symptoms, like swallowing problems or infection.
• Support a person with MS by making sure they are getting access to palliative or end of life care.
• Supporting someone to plan for future care can help both the person with MS and those important to them. Learn more about planning ahead.

What is multiple sclerosis?

Multiple sclerosis (MS) is a condition that affects the nerves in the brain and spinal cord. It is known as a degenerative and inflammatory autoimmune condition. It is not classed as a terminal illness.

In the UK, roughly 190 people out of every 100,000 people will have MS. It is more common in women than men.

MS can cause problems with vision, arm and leg movement, balance, the bladder and bowels. It can also cause fatigue and affect sensation, among other symptoms.

Causes of multiple sclerosis

MS is caused when something goes wrong in the immune system. It attacks a healthy brain or spinal cord by mistake. This damages the nerves and nerve coating (myelin). It is not clear why this happens, but most experts think it is caused by a combination of genetic and environmental factors.

Life expectancy of people living with multiple sclerosis

In the UK, the average life expectancy for people living with MS is around five to ten years lower than the average life expectancy of someone who does not have MS. Advancements in treatments in recent years means this gap is getting smaller all the time. However, some people with more aggressive forms of MS can be at risk of dying at a younger age.

MS is a lifelong condition that can cause serious disability. In some people, more advanced disability can lead to more complications. But it is rare to die from MS itself.

Types of multiple sclerosis

There are three main types of multiple sclerosis (MS):

• relapsing-remitting
• secondary progressive
• primary progressive.

Relapsing-remitting multiple sclerosis

Around 85 out of every 100 people with MS (85%) are diagnosed with relapsing-remitting MS.

Relapsing-remitting MS means someone will have new symptoms for a period of time (relapses), followed by periods with no new symptoms (remission). A relapse may last from 24 hours to many months. The symptoms during a relapse can vary from mild to severe. The remission following this can last from months to years. But some symptoms can remain during this remission.

About two thirds of people with relapsing-remitting MS go on to develop secondary progressive MS.

Read more about relapsing-remitting MS on the MS Society website.  

Progressive multiple sclerosis

Progressive MS is umbrella name given to two types of MS – secondary progressive MS and primary progressive MS.

In progressive MS, there are no periods without symptoms (remission). Symptoms gradually get worse over time. The speed at which the MS gets worse is different for everyone.

Some people also have relapses on top of the progression of symptoms.

Secondary progressive multiple sclerosis

Around two thirds of people with relapsing-remitting MS will eventually develop secondary progressive MS.

People with secondary progressive MS experience symptoms that get steadily worse. A person with secondary progressive MS might have more difficulty moving around, and other symptoms might gradually become more severe.

Read about secondary progressive MS on the MS Society website.  

Primary progressive multiple sclerosis

Around 10 to 15 out of every 100 people with MS (10 to 15%) are diagnosed with primary progressive MS.

People with MS are usually diagnosed with primary progressive MS if they have never had periods where symptoms faded (remissions). Their symptoms get worse over time.

Read about primary progressive MS on the MS Society website.  

Symptoms of multiple sclerosis

Symptoms of multiple sclerosis (MS) typically start when a person is in their 20s, 30s or 40s. Common symptoms of MS are:

• headaches
• fatigue
• dizziness
• weakness
• vision problems, such as blurred vision and double vision
• difficulty moving
• bladder and bowel problems, including constipation
• speech and language problems
• swallowing problems
• stiffness, muscle cramps and spasms
• numbness and tingling
• pain in nerve endings
• pain in joints, bones and muscles
• depression and anxiety
• tremors, unsteadiness or problems with co-ordination
• memory and thinking and planning problems
• sexual problems.

Symptoms of advanced multiple sclerosis

In the most advanced stages of multiple sclerosis (MS), someone might have symptoms more frequently, more severely, or multiple symptoms.

Someone with advanced MS is likely to have stopped taking medications which help reduce relapses and can help slow down the illness. These are called disease modifying treatments (DMTs). However, they might still be taking medications to help manage their symptoms.

Other signs that might show a person has advanced MS are:

• speech and language problems
• difficulty swallowing
• weak bones (osteoporosis) from lack of mobility
• breathing problems
• weight loss
• pressure damage (pressure sores or bedsores)
• severe difficulty moving around
• increased fatigue
• problems thinking and making decisions
• needing more help with personal care.

Some people with advanced MS may use a feeding tube to help them take medicines and be fed. This is known as a gastrostomy tube. It might sometimes be called a PEG (percutaneous endoscopic gastrostomy) tube.

During the later stages of MS, amounts of nutrition and hydration given through the tube might be reduced. Speak to the person's GP or a member of their neurology team if you are unsure about how to safely care for someone with a gastrostomy tube.

Read more about supported or artificial nutrition and hydration.

How can I support someone with multiple sclerosis towards the end of life?

There are lots of ways you can support someone with multiple sclerosis (MS) towards the end of life. We've listed some ideas below.

It is important to remember that end of life care can be culturally sensitive in some communities. Consider the person's cultural needs, as well as their care needs, while planning your approach to their care.

Support them to get help from the multi-disciplinary team (MDT)

• Find out if the person has a specialist MS nurse or neurology nurse. These professionals may have more specific expertise and may know the person well. And they can help the person to plan ahead.
• Make sure the person is getting access to end of life care. Speak to their GP or district nurse to put this into place. If the person is in hospital, speak to the hospital specialist palliative care team.
• Support the person with MS and those close to them to plan ahead. Home adaptations and special equipment can take some time to organise. Occupational therapists might be able to help with home assessments and suggestions for adaptations.
• If the person is not already known to the MS service, consider referring the person to a physiotherapist to support them with muscle spasms, stiffness and mobility.
• Consider referring the person to a psychologist, counsellor or spiritual adviser for emotional support.
• Consider referring the person for complementary and alternative therapies alongside their clinical treatments. Check with the lead healthcare professional if these therapies would be appropriate.

Manage their symptoms

• Respond to the person's individual needs – MS is an unpredictable condition that affects everyone differently.
• Be aware of their symptoms and the support they might need. The Expanded Disability Status Scale (EDSS) measures the level of disability in a person with MS over time – see MS Trust for more information.    
• Check for, or ask about, pressure ulcers. Weak bones or difficulty moving around can mean that someone with MS is more at risk of getting sore areas on their body. Pressure ulcers can put the person at higher risk of infection, so it is important to prevent them where possible. Find out more about pressure ulcers.
• Consider which medicines they may need to help manage their symptoms towards the end of life. Think about how these could be administered, or if routes of administration might need to change.

Find ways to communicate well

• Find ways to communicate that suit the person. This could include non-verbal communication, such as gestures or using a notepad.
• Give the person time to communicate. Memory, thinking and communication problems might affect their ability to say what they need.
• Avoid finishing their sentences and maintain eye contact.
• Ensure the person has access to a speech and language therapist to help with swallowing and speech problems. Speech and language therapists can also help with mental capacity assessments and support the person to communication their future care wishes.

Read more about communicating well with people towards the end of life.

Involve those important to the person

• Involve those important to the person with MS in decisions. Many people with MS have caregiving support. Caregivers are often experts themselves in the person's needs. So, it can be helpful to keep them involved in decisions about the person's care.
• Be aware of the person's relationships and how those may change. People with MS may experience changes in symptoms and become more dependent on those important to them. Read our suggestions below for offering support to those important to the person with MS.

Share information

• Follow guidelines and share information around mental capacity and making decisions. It is important to understand how this relates to future care planning. Find out more about mental capacity. 
• Share information about MS and the support available. See our useful resources section below.

How can I support someone with multiple sclerosis to plan ahead?

Planning ahead is an important part of caring for someone with multiple sclerosis (MS) towards the end of life. Some people with MS can develop problems thinking, learning and planning. Planning ahead can help the person share how they'd like to be cared for in advance. As a health and social care professional, you are well-placed to support conversations about their wishes for their future care.

Here are some things you can do to support someone with MS to plan ahead:

• Find out if the person has a Lasting Power of Attorney. There are different types of Power of Attorney. They can help make decisions about the person's property and financial affairs, and health and care. Setting up a Lasting Power of Attorney costs money but can be helpful for the person with MS and those important to them. Find out more about setting up a Power of Attorney.
• Find out if the person has an advance care plan. This document records their wishes about their future care. Share MS Trust's booklet about thinking ahead.  
• If they do not have a plan for future care yet, consider starting a conversation about it. Share information from MS Trust on end of life planning and starting difficult conversations.  
• Find out if they are signed up to be a Multiple Sclerosis and Parkinson's Tissue Bank donor.   There is a tight window for donation, so the tissue bank needs to be notified very quickly if the person wishes to donate.
• If someone with MS has difficulty communicating their wishes, reach out to a speech and language therapist for support. The person might prefer different ways to communicate, such as alphabet boards or picture charts.

Read more about advance care planning.

How can I support those important to the person with multiple sclerosis?

Caring for someone with multiple sclerosis (MS) can be physically, emotionally and financially demanding. Make sure those around the person with MS have information about what support they might be able to access.

It might be helpful to share information about:

• support available, like legal rights, social care, employment rights and help with money (see our useful resources section)
• advance care planning and Lasting Power of Attorney
• social isolation and feelings of depression
• mobility aids and home adaptations
• Marie Curie's Support Line
• Marie Curie's Bereavement Support Service
• peer support through organisations like the MS Society   or Carers UK  
• the MS Society Helpline offers emotional support and information for family and carers.  

If children are close to the person with MS, it can be beneficial to offer them the opportunity to meet healthcare professionals and be part of the person's care and support. It is important to offer age-appropriate support and information to children.

Read more about supporting children.

Building a trusting and empathetic relationship with the people important to the person living with MS, as well as the person themselves, can help them to make shared decisions. It can also help them feel supported to talk about planning ahead and future care.

Read more about supporting family and friends.

Who to ask for help

If you're worried about symptoms or medication, speak to:

• your line manager
• the person's specialist MS nurse
• the person's neurologist
• a member of the person's healthcare team, such as their GP.

Useful resources

NICE Clinical guideline Multiple sclerosis in adults: management [NG220]  

NICE Guidance End of life care for adults: service delivery [NG142]  

NHS website: Multiple Sclerosis  

MS Helpline   (freephone): call 0808 800 8000 for further help and support for you or the person you are caring for.

MS Society booklets – order free printed booklets or download PDFs online  

MS Society professional development and training resources   – designed for health and social care professionals to better understand MS and how to provide care for someone with MS.

MS Society booklet: Advanced MS, a carer's handbook   (guide for family and friends)

MS Trust – Advanced MS Champions programme   – working to train new MS health professionals in the NHS.

Citizens Advice   – legal and financial information for sick or disabled people, and carers

Information about benefits and financial help

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This content was produced with support from the MS Society  .