Caring for someone with Multiple sclerosis at the end of life
Please be aware - this information is for healthcare professionals
There are three main diagnoses of MS: relapsing remitting, secondary progressive and primary progressive.
Relapsing remitting MS
Around 85% of people are initially diagnosed with relapsing remitting MS, which means that they experience symptoms for a period of time (relapses), followed by periods of remission, when there are no symptoms. A relapse may last for anything from 24 hours to three months or more and remission can last anything from one month to many years.
With progressive MS, there are no periods of remission and the condition gradually gets worse over time. However, the speed at which this happens varies a lot and it’s not yet possible to predict exactly how it will affect one person.
Secondary progressive MS
Most people with relapsing remitting MS will eventually develop secondary progressive MS. It varies widely from person to person, but on average, around 65 per cent of people with relapsing remitting MS will develop secondary progressive MS around 15 years after being diagnosed.
People with this type no longer have clear periods when their disability stops or gets better (remissions) and their disability gets steadily worse.
Primary progressive MS
If someone has this type of MS, they never have clear periods when their disability stops or gets better (remissions). Instead, their condition begins with mild symptoms that slowly get worse over time. Primary progressive MS affects around 10 to 15% of people with MS.
Common symptoms of MS are:
- vision problems
- balance problems
- bladder and bowel problems
- speech and swallowing problems
- stiffness, muscle cramps and spasms
- memory and thinking problems
- sexual problems.
How can MS affect people at the palliative and end of life stage?
The symptoms of severe MS are similar to those experienced at any stage of MS.
The difference is that a person with severe MS will experience many, or even most, of these symptoms simultaneously. They will be more advanced on the Expanded Disability Status Scale (EDSS), which measures the level of disability in a person with MS over time.
What special considerations should I make in my approach to providing care for someone with MS?
- MS is an unpredictable condition that affects everyone differently. This means that it affects people at the palliative stage in different ways too.
- MS is the most common cause of chronic disability in young adults causing long term challenges. The situation may be particularly difficult for young adults with extremely aggressive disease who are nearing the end of their lives.
- A person with MS who has been previously sexually active may experience difficulties with sexual function, which may impact on their relationship with their partner.
- Special equipment ordering and home adaptations may take some time so forward planning is key
- Cognitive and communication problems limit the ability to express choice and take part fully in counselling or other supportive interventions.
- There may be issues around mental capacity and consent and the need for advance directives.
The MS Society works with professionals to improve the lives of people affected by MS. You can find resources, events and funding to develop and improve services for people with MS by visiting the MS Society website. You can browse and order (or download) printed copies of our publications at the online shop, or contact us for more information on 020 8438 0999, email firstname.lastname@example.org
See our key publications list and download publications on our publications and library page.
This content has been provided by the MS Society.
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