If you have MND, you may have concerns about the later stages of the disease and what will happen with your future care. Our publication End of life: a guide for people with motor neurone disease has been developed to help you with end of life decisions, so that your wishes and preferences are known and respected. This comprehensive and candid guide provides guidance on how to plan ahead and communicate your choices to family and professionals.
This guide was announced Patient Information of the Year 2015, by the British Medical Association at the BMA Awards, and is regularly updated with the help of our readers, and health and social care experts.
The following options enable you to download either the full version of the guide or extracted sections. Click on the image or heading to download the item you want.
You can also order the guide in printed format from our helpline, MND Connect.
End of life guide (interactive)
An interactive online version of the guide. This allows you to click on the content headings or the index page numbers to quickly access the subject matter you want.
End of life guide
A standard online version of the guide, without the interactive content page and index.
Section 1: Why plan ahead?
This section explains why it is beneficial to plan ahead for end of life.
Section 2: Emotional & psychological support
This section looks at the emotional and psychological impact of thinking about end of life decisions.
Section 3: Difficult conversations with professionals
This section is extracted from the End of life guide. It explores how to manage difficult conversations about end of life with your health and social care team.
Section 4: What to expect as the disease progresses
This section explores the progression of MND, end of life symptoms, and the options available for the introduction and withdrawal of treatment.
Section 5: How will I die
This section provides information about dying and how this might be managed with MND.
Section 6: What care is available
This section identifies and explains the types of care on offer at end of life and who is involved.
Section 7: Discussions with family and children
This section explores how to approach difficult conversations with those close to you to help everyone feel prepared and aware of your preferences.
Section 8: Putting affairs in order
This section provides guidance about financial and legal matters to help ensure your affairs are in order.
Section 9: Advance care planning and advance decisions
This section explains how advance care planning and an Advance Decision to Refuse Treatment (ADRT) can support your future care.
Section 10: What happens after I die
This section looks at how you can influence what happens after you die and provides guidance for those close to you.
Section 11: Inherited MND and genetic counselling
This section provides guidance on how to explore whether you have a family history of MND and what to do should you wish to leave a genetic history for your current and future blood relatives.
Section 12: Organ and tissue donation
This section looks at the options for organ and tissue donation if you have MND and what to do if you wish to go ahead.
Section 13: Suicide and assisted suicide
This section provides an overview about choosing when to die and what is currently legal and illegal (at publication date).
Section 14: What people with MND have said about end of life
This section looks at how feedback from people living with or affected by MND helped to inform the content of this guide.
How do I get further help
This section is extracted from the End of life guide. It will help you access services and support from the MND Association, and from other useful organisations.
Page last updated: 24 August 2022
Next review: January 2025