Exploring feelings of powerlessness has helped our philosophers improve end of life care.
Health and wellbeing
Professor Béatrice Han-Pile
Imagine being diagnosed with a terminal illness and feeling unable to alter your prognosis; or watching your teenage child spiral into drug addiction, unable to stop them.
These are situations of powerlessness, where we feel we have no control. Though these examples, of lives in crisis, are extreme ones, powerlessness is something many of us face in our everyday lives.
But powerlessness needn’t always be a negative experience and Essex philosophers have shown how understanding it properly could transform healthcare.
The Ethics of Powerlessness study, which launched in 2015, has impacted end of life care within the NHS and helped local carers better empathise with their patients.
“The feeling of powerlessness can be a very painful experience but properly understood and related to, it can also be an important factor of change and growth.
“When faced with circumstances which severely constrain what we can do, it is not always helpful to obsess about re-establishing control. It can be unhelpful and even damaging.
“Letting go and accepting powerlessness, in some instances, actually helps us discover new possibilities and can be an agent for empowering self-change,” she added.
"There is no reason to assume that living actively is an appropriate goal for everyone at the end of life."
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.
"Bringing academic and practitioner perspectives together...has helped generate new insight and understanding. This has the potential to improve the support provided to patients and families."
As well as influencing guidelines, Professor Han-Pile and her team have influenced practitioners’ understanding of individual patients, helping to improve end of life care in Essex.
They have provided training at St Helena Hospice in Colchester, helping its staff become more sensitive to patients experiencing situations of powerlessness and respond accordingly; “re-humanising medical practice by allowing carers to see beyond the illness into the world of the person who is ill,” Professor Han-Pile said.
The response from St Helena Hospice’s staff has been overwhelmingly positive.
“Staff came away with increased knowledge and ideas to help their professional practice. We are keen to continue engaging with this innovative research project,” said Mark Jarman-Howe, Chief Executive of the Hospice.
“Bringing academic and practitioner perspectives together to consider and reflect on real-world ethical challenges relating to experiences of powerlessness in the context of palliative and end of life care has helped generate new insight and understanding. This has the potential to improve the support provided to patients and families,” he added.
The project team have also provided training to social workers, counsellors, lawyers and other professionals at the Essex Autonomy Project Summer School.
Professor Han-Pile is keen to expand the project in new directions and is particularly interested in moral distress – the distress experienced when a person can see what they think is the right course of action but feels somehow prevented from taking it.
“A typical example,” explained Professor Han-Pile, “is when a doctor knows the best course of treatment but is unable to prescribe it because it’s too expensive, or a soldier ordered to do something they believe to be wrong. This feeling of having to act contrary to ones values, or feeling unsupported by your institution is incredibly demoralising and is a huge contributor to burnout which we must better understand.”