End of life care and end of life decisions are sensitive subjects that many people find difficult to talk about or explore. You may not feel ready for further information yet, but we are here to help you when you do. If you have any immediate concerns, please contact our helpline MND Connect for advice and support. They may be able to provide additional information not listed here.
With MND, speech and communication can become impaired. This can make discussion more problematic at a later stage. If you feel able to, try to let your loved ones know what you want while you are able to communicate your preferences. Continue to have regular discussions as your views may change over time.
It is also important to speak to your health team to explore the options available to you.
You may wish to draw up an advance care plan in which you leave written instructions about your medical care. You can also nominate someone you trust to make healthcare and financial decisions on your behalf in the event you are unable to do so yourself.
In 2012, the Association published findings of a research study exploring the views of people with MND on end of life issues. The study, Choices and control when you have a life-shortening illness, was undertaken by independent research experts Picker Institute Europe. For more information including the findings report, click here.