End of life care in MND
Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord.
The most common cause of death in MND is respiratory failure, often with additional chest infection. It is very important to reassure people with MND and carers that death from choking is exceptional.
For some people with MND, death can be very sudden, before an obvious end stage is reached. Others experience a longer final stage, which can last many weeks. For most people with MND, death will be peaceful.
If it is thought the person is approaching end of life, care plans should be reviewed so that appropriate care can be given.
Early and sustained good symptom control is essential in the management of a peaceful and dignified death.
Professionals should check:
- pain – patients may experience severe discomfort and/or distress, particularly in the later stages. Opioid analgesics may be an option. Careful titration will avoid excessive drowsiness and respiratory depression
- pressure care
- bowels and bladder
- emotional and practical needs of the carer and family.
The GP, specialist or other appropriate prescriber should consider anticipatory prescribing of a range of medications to address worsening symptoms, including:
- antimuscarinics to reduce saliva and respiratory secretions
- opioids and benzodiazepines, such as midazolam, to manage breathlessness that is exacerbated by anxiety, and other medications to reduce anxiety/terminal restlessness, such as haloperidol or levomepromazine
- anti-emetics for nausea.
Regular analgesics should usually be continued until death, even if oral medication is no longer possible because of dysphagia.
Alternatives, such as suppositories or parenteral routes should be considered. Parenteral medication may be given as a continuous subcutaneous infusion using a syringe pump.
Most people stop eating and drinking in the final days of life. The end of life care team will advise on hydration by mouth or feeding tube.
In the final days of life, mouth breathing and minimal fluid intake can cause the mouth to become dry and the lips become more likely to crack. The mouth should be kept clean and moist: some people find ice lollies refreshing.
This is the name given to agitation that is sometimes seen in people just before death, and is usually associated with a reduced level of consciousness. A person may appear unconscious, restless and unsettled. There may be disorientation, anxiety, fidgeting and the person may look scared or distressed. It can happen now and again or all the time.
This may become extremely difficult as the person with MND reaches end of life, but even if they are unresponsive, every attempt should be made to maintain communication. Eye movements and single response answers to closed questions may be used, or picture/alphabet boards or other communication aids where appropriate.
MND is unpredictable and may progress rapidly, with death occurring more quickly than anticipated. Carers and family members will need practical and emotional support. Care plans and information must be shared by all members of the care team and adequate nursing cover maintained.
Taking time to discuss end of life with the family as early as possible can be positive, as it allows them to look at their lives together, achieve things that are important to them and tie up loose ends.
Find out more
More information can be found in our booklet for health and social care professionals: