Building a picture of experience at the end of life.

We should welcome this first large-scale survey into people’s experiences of care at the end of life, as it will add to the recent, valuable VOICES (Views Of Informal Carers – Evaluation of Services) questionnaire to build a picture of how the end of life is being experienced by individuals and their loved ones and carers in the UK at the moment.

A poll commissioned by Compassion in Dying in April 2011 found that only 3% of people have taken steps to set out their treatment preferences for end-of-life care in an Advance Decision, despite 60% stating that they would wish to refuse certain medical treatments. This is significant as not setting wishes out in advance, either through an Advance Decision or a Lasting Power of Attorney, can mean that healthcare professionals are not aware of patients’ wishes and therefore may be unable to follow them.

If more patients are supported to make their own decisions about what they want to happen to them at the end of life, and set them out in a way that is legally binding if they lose mental capacity or the ability to communicate, healthcare professionals are more likely to be able to observe their wishes, and act in accordance with them. Support for patient autonomy is a vital part of ensuring that people have what they consider to be a good death.

Compassion in Dying provide Advance Decisions free of charge and run an end-of-life rights information line (0800 999 2434).