What does dying from motor neurone disease look like?
Dying from motor neurone disease usually happens because the muscles needed for breathing become too weak.
General information: This page gives general information for people in Australia. It cannot tell you exactly what is happening in one person's situation. If you have concerns about a symptom, medicine, treatment decision or change in someone's condition, contact their doctor, palliative care team, nurse or other treating health professional.
Dying from motor neurone disease usually happens because the muscles needed for breathing become too weak. The person may also have severe weakness, trouble swallowing, weight loss, speech changes, fatigue, infections and increasing need for care. Near the end, they may become more sleepy, less able to communicate, and more short of breath.
Motor neurone disease, or MND, affects the nerves that control movement, speech, swallowing and breathing. It does not usually affect sight, hearing, touch, taste or smell. Many people remain aware of what is happening, even when they cannot move or speak easily.
What families may notice
Weakness often spreads over time. The person may need help to turn in bed, sit up, clear saliva, cough, wash, dress and use the toilet. Speech may become quieter or harder to understand. Communication aids can help, and it is better to plan these before speech becomes very hard.
Swallowing may become unsafe or tiring. The person may cough with food or drink, take longer to eat, lose weight, or have more saliva or thick mucus. Some people choose a feeding tube earlier in the illness. Others do not. This is a personal medical decision that should be discussed with the MND team, respiratory team and palliative care team.
Breathing changes are central in MND. Early signs of weaker breathing muscles can include morning headaches, poor sleep, daytime sleepiness, vivid dreams, fatigue or breathlessness when lying flat. Later, breathlessness may happen at rest.
The final stage
The final stage may be a slow decline, but it can also involve sudden deterioration over days or hours, often after an infection. MND Australia notes that respiratory failure is the most common cause of death in MND. Choking can be a major fear, but death from choking is rare.
Near death, the person may become very weak and sleepy. Breathing may be shallow or irregular. They may have trouble clearing saliva or secretions. They may take little or no food and fluid. If they use non-invasive ventilation, the team should discuss what the person wants if the mask becomes uncomfortable or if they want to stop using it.
What care can help
Good care usually involves an MND clinic or neurologist, GP, respiratory specialist, speech pathologist, dietitian, occupational therapist, physiotherapist, community nurses and palliative care. Palliative care can help with breathlessness, saliva, pain, anxiety, sleep, equipment, medicines and family support.
Because communication can become hard, early planning matters. Ask the person what they want while they can still tell you, and write it down. This can include ventilation choices, hospital transfer, feeding, preferred place of care, and who should speak for them if they cannot.
When to get help now
Contact the MND team, GP, respiratory specialist or palliative care team urgently if breathlessness, morning headaches, sleepiness, choking, swallowing trouble, saliva problems, infection symptoms, pain or anxiety are new or worsening.
Call 000 for severe breathing distress, collapse, blue lips, severe choking that is not clearing, or another life-threatening emergency, unless the person has an expected-death plan with different instructions.
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