Table 3

Questions to consider in a broad discussion about tracheostomy ventilation in MND

Core questionsIssues to explore within
What benefits do you expect and hope from having tracheostomy ventilation?How long they hope to live for;
Whether the survival expectations (or those of long-term therapy development) are realistic
When do you think the best time for tracheostomy ventilation would be?Value of planning ahead of critical respiratory failure to avoid crisis intervention
Have you thought about any of practical aspects of tracheostomy ventilation and how things would work at home?Equipment size and complexity;
Need for regular home visits;
Tube blockage, infection, etc
How do you feel about the issue of increasing physical dependence?Increasing external or family care input requirements;
Bladder and bowel management;
Potential prolonged hospitalisation
How does your partner or close family feel about tracheostomy ventilation?Has there been an open discussion?
What do they think the impact on them might be?
What are your thoughts on communicating your wishes in the long term?The impact on speech of both disease and tracheostomy ventilation;
Loss of limb movements;
Loss of eye movements
How do you feel about the possibility of developing cognitive (thinking and planning) problems with longer-term MND?Acknowledging uncertainty about this in current literature;
Understanding current difficulty in assessing these functions in advanced disease, and inherent loss of insight
Are there circumstances in which you would want tracheostomy ventilation to be withdrawn?Making a detailed Advance Directive;
Understanding the management of symptoms after withdrawal of tracheostomy ventilation;
Expectations of timing of death after tracheostomy ventilation withdrawal realistic or too rigid
  • MND, motor neurone disease.