Support with decisions about end of life care

Information for the public

It is not possible to cure MND, so whenever you want to talk about any concerns you have about dying and what you would prefer to happen (or not happen), your multidisciplinary team will be there to talk about these with you. You should be asked if you would like to talk about end of life care, but it is completely up to you when you want to talk about it. Your family or carers can be involved in the discussions if you would like them to be.

These are some of the areas that you might want to talk about.

Areas of end of life care to talk about

Things that you might wish to plan for, such as what you do want to happen and what you don't want to happen, for example, whether you would want a gastrostomy or non‑invasive ventilation.
Treatments that may be offered – what they involve and how you feel about them.
What could happen when you die.
Where you would like to be cared for and where you would like to die.
Who will be there to represent your wishes.
Legal issues to plan ahead for your future care.
Having medicines at home that can help with problems like breathlessness.

You might be referred to a specialist palliative care team if you and your team think this would help.

When it comes to the end of your life, your team should make sure that you and your family or carers have the equipment, care, support and medicines that you need to make you as comfortable as possible, and that bereavement counselling is available for your family or carers.