If you have end stage MS, you have disabilities that make you vulnerable to other health complications. These complications can be life-threatening. It is rare for someone to die from MS itself.
The difference between this stage and advanced MS is your body now finds it much harder to respond to treatment in the face of other threats to your health.
If you have or are approaching end stage MS, your MS symptoms may be severe and complex to manage. Your health team are likely to be particularly concerned about monitoring your symptoms. They will be looking for signs that they are worsening and becoming hard to treat. At times, they may lead to you needing an emergency admission for hospital care. Your health team will also be looking out for physical decline and weight loss.
Infections are a particular concern. If you get an infection you can be 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.
Many of the symptoms associated with end stage MS are associated with being less mobile and having less muscle strength. For example, if you remain in one position for long periods of time, you may be at risk of developing pressure sores or blot clots due to immobility. Pressure sores can also become infected. Without careful management, muscles spasticity or spasms can cause pain and postural discomfort. Occupational therapists or district nursing teams will be able to help to position you
If you have developed weaker chest and neck muscles, you may struggle to speak loudly, or have difficulty with breathing or clearing your throat or lungs. A speech and language therapist will be able to advise you on how to support your swallowing, breathing, speaking and coughing with exercises or equipment. If you find it difficult to swallow, you might be at risk of choking or having food or fluids enter your lungs (aspiration). This can result in respiratory infections, which can lead to pneumonia.
Severe bladder or bowel problems can lead to recurrent infections which can result in hospitalisation. Urinary tract infections can become a common problem, but there are ways that these can be managed. You may be asked to consider interventions to make toileting easier for you, such as antibiotics, catheters or changes to your diet. Dietary changes could also be helpful in dealing with feeding difficulties that might be caused by weaker swallowing muscles. A feeding tube can help you get the right nutrition and prevent excessive weight loss.
End stage MS may be accompanied by periods of mental confusion or disorientation. Sometimes this is a result of an infection. Having the right care and support in place means that your family and carers will know what to look out for and treat. Often, a person with end stage MS has their care managed by their GP.
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. If you reach the end stage of MS it might be appropriate for you to access end of life palliative care services and 24 hour care.
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 you're not sure where to start with advance care planning, the MS Trust has a short guide called Thinking Ahead where you can find more information and a template statement that you can use. Both are available for free from our publications shop.
Other organisations, such hospices and charities such as Dying Matters will also have useful information. The Dying Matters website encourages 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.
