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Advance Care Planning in End of Life Care$
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Keri Thomas and Ben Lobo

Print publication date: 2010

Print ISBN-13: 9780199561636

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780199561636.001.0001

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Listening to the patient's voice

Listening to the patient's voice

Chapter:
(p.28) Chapter 3 Listening to the patient's voice
Source:
Advance Care Planning in End of Life Care
Author(s):

Heidi Macleod

David Oliver

Don Redding

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780199561636.003.0003

This chapter looks into the detail of the patient and carer experience, looking at the Motor Neurone Disease (MND) Association, patients, and partner organizations. First it introduces a perspective of the MND Association. MND is without any effective treatment and it relentlessly robs those with it of the ability to use their limbs, speak, swallow, and finally breathe. The Motor Neurone Disease Association (MNDA) know what matters and help through a number of ways to pay attention to the detail that is essential to effective care and support when people face this aggressive neurological condition. By presenting different stories, the discussion tries to convey the importance and sometimes complexity of ‘listening to the patient's voice’. In order to make sure that Advance Care Planning for the end of life is personalized, effective and safe, one must not forget to listen, learn, and lead.

Keywords:   MNDA, motor neurone disease, care, patient's voice, end of life

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