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

Talking about
end of life
People will have many concerns about the progression of MND,
the process of dying and death itself, and may not express their
fears openly.
People with MND need to be able to exercise choice and control and
should be encouraged to talk through options for their care and their
preferences for end of life. 3 Conversations may be more difficult if the
person’s speech becomes affected, or if they experience cognitive change.
Timing discussions
It needs a level of judgement to decide when is the best time to have
these discussions. 4 People with MND may expect a professional to
raise the topic, or they may indicate, by the questions they use, when
they are ready to have information. If neither of these happens, the
professional may need to raise the subject in an appropriate way.
Topics to talk about
The overriding topics that people with MND often want to talk about
are their fears and concerns, and not necessarily the management of the
condition. However, they may have clear views about how they want the
latter stages of their illness managed. This may include decisions about:
• artificial feeding and ventilation
• resuscitation
• use of antibiotics
• place of care/death
• who they want to be involved in their care.
Time is needed for the person to feel comfortable enough to express
their worries, and it is important that concerns are taken seriously and
solutions, where possible, are made available.
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