It is rare, although not impossible, for someone to die from MS itself. However, some people with MS develop disabilities that make them very vulnerable to serious complications which can lead to death.
If an individual reaches this stage, where their disabilities result in severe difficulties which may not respond to treatment and lead to life-threatening complications, they are considered to have end stage MS. Some of the symptoms that can make an individual vulnerable are:
- very severe bladder and/or bowel problems – which lead to recurrent infections or regular hospitalisation
- increased susceptibility to respiratory infections – which can lead to repeated bouts of pneumonia
- swallowing problems – which can cause choking or aspiration pneumonia (where food or fluid enters the lungs)
- feeding difficulties – which may require a feeding tube or result in severe weight loss
- difficulties breathing due to weakening of the respiratory muscles
- losing the ability to speak
- pressure sores due to immobility – which are at risk of becoming infected
- developing blood clots due to lack of mobility
- increased levels of pain
- mental confusion or disorientation.
All of the above can lead to an individual needing an increasing number of trips to hospital or accident and emergency. If an individual experiences an infection it can put them at risk of developing sepsis, where the body begins to attack its own organs and tissues in response to the infection, which is a potentially life-threatening condition. Some other signs which might indicate end stage MS include physical decline, weight loss and multiple health conditions (comorbidities). A person with end stage MS will often require 24 hour care.
Many of these symptoms are similar to those seen in someone with advanced MS. However, whilst treatment for advanced MS aims to help a person improve medically, in end stage MS the focus shifts to helping a person live to the end of their life with respect, dignity and as comfortably as possible. When a person reaches the end stage of MS it might be appropriate for them to access end of life palliative care services.
Dying Matters(link is external) is a website that aims to encourage people to talk about dying, death and bereavement with their families and friends and to help people discuss their wishes towards the end of their lives, including where they want to die and their funeral plans.
