Ideal Queen's Speech: Promote patient choice at the end of life

"My Government will introduce a Bill to promote patient choice at the end of life."

There needs to be a more holistic approach to end-of-life care, which recognises the importance of patient choice over care and treatment as well as choice over care setting. While the range of options available to patients at the end of life is to be commended, it often falls short of what dying patients actually want. The lack of awareness of existing options, and the difficulties of recording patient preferences for end-of-life care, means that these choices are rarely exercised. For example, and whilst 82% of the public have strong views about their care at the end of life, only 4% have completed an Advance Decision or Lasting Power of Attorney, which enable patients to set out their treatment wishes in advance of a loss of capacity.

One of the key concerns cited by Compassion in Dying’s service users is that their Advance Decision may not be available at the right time or may be ignored by health care professionals. There needs to be greater confidence amongst the public that their Advance Decision will be recognised and respected. For that reason we need a formal, national system for the recording of Advance Decisions; similar to the Organ Donor Register for example.

While patient choice at the end of life has been recognised as a central pillar in the campaign to give patients the right to die in a place of their own choosing, this must be seen in the wider context. There is a growing body of evidence to suggest that discussing and meeting individual preference at the end of life leads to what patients, and their relatives, consider to be a good death. The right to choose where to die is one choice out of many that allows dying patients to have the death that they want.

Not all of this can be achieved through a single piece of legislation. But what is required is a statutory framework to enshrine existing choices and to ensure that national standards of end-of-life care can be delivered in all care settings.