A professional’s guide to end of life care in motor neurone disease (MND)

Supporting family
and carers
MND is unpredictable and may progress rapidly, with death
occurring more quickly than anticipated. 7
Carers and family may need practical and emotional support. 14
• Advice should be given to carers and family members about the
appropriate care and management in certain situations. This can
avoid them inappropriately calling the emergency services.
• Concerns about finance and paying for care can cause anxiety to
carers. At some point, the person with MND is likely to meet the
criteria for continuing healthcare funding and health professionals
are in a position to complete the initial screening tool for this.
• Professionals can ensure adequate support for the carer when
MND becomes more complex.
• Taking time to discuss end of life with the family as early as possible
can be positive, as it allows them to look at their lives together,
achieve things that are important to them and tie up loose ends.
• Care plans and information must be shared by all members
of the care team and adequate nursing cover maintained.
• Early and sustained symptom control is essential in the management
of a peaceful and dignified death. 7
• Ideally, the person with MND should remain in control of end of life
issues as much as possible.
Carers’ Alert Thermometer
The Carers’ Alert Thermometer is a tool to help professionals to
identify and support the needs of unpaid carers providing end of
life care at home. Visit www.edgehill.ac.uk/carers to register to
access the tools.
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