Guide to manage last days of life in Parkinson’s disease

28/06/2013 End of Life

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Parkinson’s and the last days of life has been developed by NCPC’s Neurological Conditions Group following a survey of Parkinson’s disease experts which expressed concerns about diagnosing dying, excluding reversible causes, withdrawing medications and symptom control. Guidance was developed as a result, led by Dr Mark Lee, Consultant in Palliative Medicine at St Benedict’s Hospice.
Both the End of Life Care Strategy and last year’s Palliative Care Funding Review emphasised the importance of providing end of life care on the basis of people’s needs, whatever condition they have. However there is little guidance available to help teams manage the care of people with neurological conditions in the last days of life.

Parkinson’s is one of the most common neurodegenerative conditions. 9 out of 10 people with Parkinson’s die either in hospital or in care homes, with disproportionately higher numbers dying in care homes (41%) compared to the national average (18.5%). Nearly half (49%) of people with Parkinson’s die in hospital.

The guidance arrives amidst new projections that the number of people living with Parkinson’s in the UK is set to rise by 28% by 2020, from 127,000 to 162,000. This further emphasises the need to get care right for this group, including, when the time comes, access to high quality end of life care.

NCPC hopes the new guidance will help professionals care more confidently for people with Parkinson’s and related conditions in the last days of life.

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