End of life and assisted dying

This policy statement has been developed with advice and guidance from people with Parkinson's, the people who love and care for them, health and social care professionals and other experts.

What we believe about end-of-life decisions, including assisted dying

Nobody likes to talk about this. But I think it has to be brought out into the open, so all families affected by Parkinson's can make the right decisions if they need to.

Carer, whose wife has Parkinson's

We believe that people with Parkinson's, their carers and families should be able to exercise their right to access effective health and social care services at every stage of the condition, including at the end of life.

This should always involve timely provision of good quality information so people know what support is available at every stage and how they can get it.

We neither support nor oppose a change in the law to allow assisted dying. Our position is neutral because we recognise that people with Parkinson's have a wide range of personal beliefs on this issue.

Why we believe this

Parkinson's is a progressive, fluctuating, neurological disorder which is degenerative. Despite advances in treatment, there is no known cure. The advanced stages of Parkinson's can be very difficult to cope with.

People in the UK have a range of views about end-of-life decisions, informed by various factors including personal experience, social attitudes and personal traits, as well as religious and cultural background.

As Parkinson's affects individuals from all backgrounds, it's important that Parkinson's UK supports everyone with Parkinson's, whatever their belief.

What's the evidence?

People with neurological conditions including Parkinson's are much less likely to have opportunities to take part in advance care planning, or to receive specialist palliative care and end-of-life support than people with cancer.

Research shows that the needs of people with Parkinson's at the end of life are not always identified or satisfied, and that problems include a widespread failure to offer advance care planning.