End of life guide
We are delighted to announce that our groundbreaking publication, End of Life: a guide for people with motor neurone disease, will be available from 16 May 2014. Developed in response to feedback from people living with and affected by MND, we hope this guide will make it easier for family members and health and social care professionals to discuss end of life decisions. Access to clear information can help people feel more in control of their future care and reduce fear.
“I found this extremely helpful. Especially as a springboard for further discussion with professionals.” Person living with MND
What does the guide contain?
This comprehensive and candid guide covers how to plan ahead, including information on what to expect at end of life with MND. It also offers practical suggestions on how to open conversations about available options.
The guide is similar to our Living with motor neurone disease publication, with a slimline A4 wallet folder for various inserts, such as our Publication List. A feedback form is included, which can also be accessed online.
When should the guide be introduced to affected families?
The guide should not be provided simply because it is new. Families could find it distressing to receive this guide without warning. However, the earlier a family feels ready to access this information, the more beneficial it can be.
The guide should be:
• supplied when requested or ordered by an individual
• offered as support when someone asks questions about end of life, with a clear explanation that it contains sensitive content about death and dying.
Due to the sensitivity of the content, A5 flyers are available to help introduce the guide, as appropriate. (See below for how to order these).
The guide will help you answer questions and offer general support, but families should be encouraged to seek out relevant health and social care professionals to discuss their end of life concerns. If you are unsure about anything raised during an end of life discussion, please ask MND Connect or your local RCDA for guidance.
Does this replace our previous end of life publications?
It replaces our short booklet End of life decisions. Please discard these. All other related information will remain in use.
How do we order copies?
To order guides or flyers, contact our Care Admin team and provide recipient details where possible. Please order as needed, as stockpiling can force a reprint and cause wastage. Thank you.
Telephone: 01604 611812 or 611685
If people living with or affected by MND wish to order directly, they should contact our MND Connect helpline. The team can support and direct to further assistance:
Telephone: 0808 802 6262
The guide will also be available to download from our website at: https://www.mndassociation.org/publications We will create an additional interactive web version of the new End of Life guide, with extracted sections for separate download, by July.
Thank you to:
We are grateful for the courageous input from people living with and affected by MND and the generous support from our wide panel of experts. Particular thanks to our professional mentor, Dr David Oliver, Consultant in Palliative Medicine, Wisdom Hospice, Rochester and Honorary Reader, Centre for Professional Practice, University of Kent.
The new guide is evidence based, user tested and has been reviewed by multiple experts in accordance with The Information Standard.