‘“Living well” or “living actively”? Ethics of Powerlessness researchers help revise NICE palliative care recommendations

The Ethics of Powerlessness research team at the University of Essex has successfully helped amend the draft scope of service delivery guidelines, ‘End of Life Guide: Delivery of Adult Services For People in the Last Year of Life’.

The guidelines are being developed by the National Institute for Clinical Excellence (NICE) on behalf of NHS England and will also be used to update the NICE quality standard for end of life care.

The Ethics of Powerlessness team said that part of the definition of palliative care used in the document should be changed. They suggested that the aim of palliative care should not be defined as to help adults at the end of life to “live as actively as possible”. They said that this should be amended to say the aim is to help adults at the end of life to “live as well as possible”.

The recommendation put forward by the team said: “Surely the most important thing is that patients at the end of their lives should live as well as possible, and there is no reason to presuppose that an ‘active lifestyle’ will deliver this result for all. For example, some patients may take great comfort just from not being in pain and from being able to spend quiet time in the company of those whom they love. Others may like to meditate or reflect on the meaning of their lives so as to find peace. Urging such patients to be ‘more active’ could actually get in the way of their being able to live well. Our suggestion focuses on the most important aspect (living well) and leaves space for less active ways of living well towards the end of life.”