The healthcare context
Working with a team of Essex researchers, Professor Han-Pile built an international network of health care practitioners and researchers. She set out to examine how those experiencing powerlessness at the end of life could be better understood and how this sensitivity to their personal feelings could improve how they are supported.
“NHS literature focuses heavily on ableness and autonomy. This is especially true of end of life guidelines which have emphasised living ‘actively’ and encouraging patients to carry on their life as normal.
“This prioritisation of patient control can be burdensome for some patients who don’t want to pretend everything is normal or make all the decisions themselves. It’s much better that people are encouraged to live ‘well’ which is less prescriptive and opens opportunities for acceptance and self-transformation.”
The team’s recommendation that the term ‘living actively’ should be replaced with ‘living well’ in revised NICE guidelines on Improving Supportive and Palliative Care was accepted in 2016.
“In our view, there is no reason to assume that living actively is an appropriate goal for everyone at the end of life,” added Professor Han-Pile.