Approach to future care planning in motor neurone disease: ethical and legal perspectives

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Future care planning is an important tool in, among other areas, the holistic care and management of degenerative and terminal conditions. Allowing individuals to make informed decisions about their own future care and treatment in advance of any loss of capacity is a key mechanism in upholding individual autonomy.

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Summary

Motor neurone disease is a terminal degenerative disease of the nervous system, manifest by progressive loss of motor function and cognitive deterioration. Thirty per cent of people diagnosed with motor neuron disease die within one year and over half die within two years of diagnosis. Ethical issues involved in caring for people with motor neuron disease, particularly around autonomy, control and decision-making, highlight the importance of early future care planning. This study aims to investigate stakeholders’ perspectives on the efficacy and uptake of future care planning, in its ethical and legal contexts.