Making your choices known

There are several ways to share your choices about the breathing support you would prefer at the end of life

It is worth taking the time to reflect upon and discuss your choices at end of life. It is good to share these wishes with your family and any care providers, so they can act upon them when you are nearing the end of life.

MND/ALS can affect communication. It can also affect the ability to make choices due to fatigue and possible changes to thinking. Therefore it is advisable to document your wishes as soon as you feel ready to do so.

There are several ways you can document your wishes and choices. All of these are flexible and you can change them if you want to. These may include wishes about any aspect of your care and treatment, as well as choices about breathing support.

An advance care plan helps to outline the kind of care you wish to receive, and personal or spiritual reasons for this. It is not legally binding. However, it is useful guide for family and health care staff.

An Advance Decision to Refuse Treatment (ADRT) is a legally binding document. This states specific choices, that will be followed in certain circumstances. For example, an ADRT can state a person’s choice to withdraw from ventilation once a certain point of deterioration is reached.

For detailed information and templates, read the MND Association’s guides to end of life and advance planning. Find them in the External Resources section.