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Palliative Care for Motor Neurone Disease

Palliative Care services provide valuable input into symptom management for improved quality of life. There are many palliative care teams across metropolitan and rural South Australia. A referral to a local palliative care service is sometimes best made early in a person's disease process.

When the focus becomes palliative and patients are thought to be in the final phase of life, their condition can deteriorate quickly. Additional supports may need to be mobilised rapidly, particularly if the patient wishes to die at home.

Palliative Care information for GP

Respiratory failure due to muscle weakness, aspiration, or infection.

  • Manage any dyspnoea.
  • Patients may be dependent on bilevel positive airway pressure ventilation (BPAP or BiPAP), requiring consideration if withdrawal is requested. 
  • Contact Palliative Care Services as deterioration is likely to be rapid, requiring intensive support. 

Multi-system organ failure leading to gut dysfunction.

  • If PEG tube present, it may be useful for medication until absorption is compromised. Some medications are not suitable for administration through a PEG tube. Consult a community pharmacist.  Review appropriate time to withdraw feeding, often prompted by leakage around the tube, increased secretions, and aspiration. 
  • If no PEG tube, subcutaneous (SC) medication is likely to be required.  Consider a syringe driver. SC fluids may cause harm by increasing secretions, oedema, and aspiration and are usually not recommended.

Pain can be a significant issue in the last few days.Use opiods for background analgesia and provide breakthrough doses.

Consider medications for terminal phase dyspnoea.

For further information about palliative care contact the specialist palliative care service.

Consider early involvement of palliative care specialists. 

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