Unfortunately, there is currently no known cure for MND and this will shorten a person’s life, although the rate of change can be very variable. Sometimes this is a slow gradual process, with increasing weakness and sleepiness, and sometimes it happens more quickly, for example, if breathing becomes a problem.
Care is available to ensure a person is as comfortable as possible. This is often in a person’s own home, although sometimes they are in hospital when this happens, or they may chose to be admitted to a hospice. All efforts will be made to support the person with MND and their family. At home the district nurse will call regularly, and can advise on, for example, mouth care and management of bowels. Carers can be arranged to visit several times during the day, for example, to help with washing. Night sitters can also be organised so the family can get some rest. A member of the palliative care team can help to provide extra support and advice, working closely with the primary care team (GP and district nurse).
As a person becomes weaker, it may no longer possible to take tablets by mouth. It may be possible to continue to use a gastrostomy tube. However, towards the end of life sometimes medications are given by a continuous infusion. This involves a small needle sitting just under the skin, connected to a battery operated pump. In this way medications can be given continuously for symptoms e.g. pain and breathlessness. Common medications used include morphine for pain and breathing problems, midazolam to help a person relax and help breathing, and hyoscine to help reduce excess secretions.
If a person with MND has a gastrostomy in place, then when they are coming towards the end of their life this does not have to be used so strictly. They are likely to not want much food, although continuing with small volumes of water may help with comfort. The use of non-invasive ventilation can be continued if this is helpful with breathing and symptoms, but can be discontinued if it is causing any distress.
If you have any concerns about this stage then please do speak with a member of the team. It may be useful to write down any specific thoughts about things you would wish for, for example, to stay and be cared for at home. There is documentation available to support you with this if wanted. Either your GP or a member of the MND team or palliative care team will be happy to discuss things with you and try to ensure that your wishes are respected.