End stage MS

What is end stage MS?

It is rare for someone to die directly from MS itself. However, it is possible to develop disabilities as a result of your MS that make you more vulnerable to serious complications which can lead to death. If you reach the stage where your disabilities result in severe difficulties, which may not respond to treatment and so lead to life-threatening complications, you're considered to have end stage MS.

What symptoms might indicate you're vulnerable to end stage MS?

Some of the symptoms that can make an individual vulnerable to reaching end stage MS 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
  • difficulty with speech or 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 you needing an increasing number of emergency admissions to hospital. If you experience an infection it can put you at risk of developing sepsis. Sepsis is a potentially life-threatening condition where the body's immune system overreacts to an infection and begins to attack it's own organs and tissues. If not treated quickly it can lead to organ failure and death. Sepsis is sometimes referred to as septicaemia or blood poisoning.

Some other signs which might indicate end stage MS include physical decline, weight loss and multiple health conditions (comorbidities). If you have end stage MS you will often require 24 hour care.

Many of these symptoms are similar to those seen in someone with advanced MS, so it can be difficult to determine whether you've entered the end stage of MS. However, whilst treatment for advanced MS aims to help you improve medically, in end stage MS you may no longer respond to treatment and so the focus shifts to helping you live to the end of your life with respect, dignity and as comfortably as possible. When you reach the end stage of MS it might be appropriate for you to access end of life palliative care services.

Advance care planning

If you don't already have an advance care plan in place, this is something you might like to consider discussing with a health professional involved in your care. Advance care planning (ACP) is a process through which you can think about how you would like to be cared for in the future, including at the end of life.

Advance care planning is relevant at all stages of MS, as it gives you a chance to talk through what might happen and what your treatment options might be. It's also a way of making your wishes known if you're ever in the position where you're unable to decide for yourself and you need someone else to do it on your behalf. However, it's especially pertinent to have a plan in place as you near the end of life so you can make your wishes known to your family and friends, and the health professionals involved in your care.

Advance care planning can help you prioritise what's important to you and make choices that help you maintain control over your life right to the end. It's a way to get your voice heard if you feel very strongly about something, such as a treatment you know you wouldn't want to have. You can identify who you want to be consulted about your care and to be there to support you. You could also specify where you'd prefer to be cared for, this might be in hospital, a hospice or at home, and where you'd like to die – this might be the same or different places. You can even include any funeral plans.

Remember, you'll still be given the best possible care, support and any appropriate medication to control symptoms to make you as comfortable as possible.

If advance care planning is something you'd like to consider but you're not sure where to start, the MS Trust has a guide to advance care planning called Thinking Ahead where you can find more information. There is also the Dying Matters website which 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.

These conversations are never easy for anyone and it can lead to some powerful emotions such as sadness and grief, especially towards the end of life. However, it's helpful to think about the choices you have whilst you are still able to. Having an advance care plan in place means that it's more likely you'll receive the care you want, in the place of your choice, for example research has shown that people with MS who have an advance care plan are less likely to die in hospital. Planning ahead can also bring with it peace of mind. You know that your loved ones and the health professionals involved with your care are aware of your wishes and will do their utmost to follow them.

Find out more

Nicholas R, et al.
Influence of individual, illness and environmental factors on place of death among people with neurodegenerative diseases: a retrospective, observational, comparative cohort study.
BMJ Supportive and Palliative Care 2021; Sep 6 [Online ahead of print]
Full article (link is external)
On this page