Experiences of Powerlessness in End-of-Life Care

A Medical Humanities Workshop, The Ethics of Powerlessness Project, 21st November 2015, University of Essex, Wivenhoe Park, Colchester


Patients, families and carers very often report feeling powerless when faced with end-of-life issues. Accordingly, current NHS policies and guidelines focus on ‘empowerment’, itself understood as the restoration or improvement of control. But what does it mean to feel powerless at the end of life? Is it the same experience for patients, for relatives and for carers? Is powerlessness best understood as loss or lack of control? If not, how best to understand it? And what should be the focus of future guidelines and policies for care at the end of life? This workshop explores these key issues with the help of health care researchers, health care practitioners and philosophers.


Lakeview Room, Silberrad Centre, University of Essex

9.00: Welcome (tea and coffee)

9.15-12.00: Closed Round Table (Green Paper: ‘Experiences of Powerlessness in End of Life Care’. Available to read online, or as a PDF download.)

12.00-13.00: Lunch

Room 4N.6.1, University of Essex

13.00-13.50: Sheila Payne (International Observatory on End of Life Care, Lancaster): Metaphors in end of life care: power and powerlessness.

13.50-14.40: Anna Milberg (Linköping University, Sweden): Powerlessness during palliative care – patients’ and family members’ experiences.

14.40-15.30: Isabelle Aujoulat (Université Catholique de Louvain, Belgium): The perspective of chronically ill patients on their experiences of powerlessness and empowerment.

15.30-15.45: Break (tea and coffee)

15.45-16.35: Aileen Walsh (Anglia Ruskin): Moral distress; a voice worth listening to?

16.35-17.25: Jane Lassetter (Brigham Young University, USA): Families’ experiences with powerlessness in healthcare settings.

Green Paper

Experiences of Powerlessness in End of Life Care‘. Available to read online, or as a PDF download.



Pr Isabelle Aujoulat worked in the area of health promotion and education for 22 years in a variety of settings: non-governmental organisations, the private research sector, a hospital, and Université Catholique de Louvain in Belgium since 1999. She teaches health promotion, patient education and qualitative research methods. Her main areas of interest and expertise include: patient empowerment, psychosocial aspects of health behaviours, identity work following the diagnosis of a chronic disease. She is currently conducting research on transition from paediatric to adult-oriented care, as well as research on the contribution of Information and Communication Technologies (ITCs) to patient empowerment and improved patient outcomes. She has addressed various issues of chronically ill patients’ lives and illness experiences in a number of peer-reviewed articles and as a keynote speaker in several international conferences. Moreover, she is a member of several international working groups that are relevant to the scope of patient empowerment and clinical health promotion.


Simon Bacon lives and works in Wivenhoe Essex. He is the director and owner of a number of Osteopathic and Physiotherapy practices throughout North East Essex which provide treatment for both private and NHS referred patients. He has been working as an Osteopath for over 20 years and being driven by a deep interest in a holistic approach to healthcare Simon also practices Acupuncture and Spiritual Healing. He has practiced meditation since the age of 15. His research question for a postgraduate degree he completed 2011 in Transpersonal Psychology and Consciousness Studies was exploring the Role of Spirituality in Osteopathic Practice. After completing an MA in Sculptural Practice in 2013, he now also works as a Sculptor


Karen has a background in General Practice working in practices in Colchester for 13 years where she developed an interest in End of Life Care. She led her practice to be one of the first to be accredited for the Gold Standard Framework Going for Gold Programme. Karen was the Clinical Lead for End of Life Care for the North East Essex Clinical Commissioning Group between 2013 and 2015. In this role she led a project encouraging the early identification by Primary Care of patients who may be in the last year of life, counselling these people about choices in their care and recording their choices on the local electronic palliative care register, locally called the My Care Choices Register. This project successfully reached over 40% of those in the last year of life in participating practices and allowed 86% of people identified to be cared for in their preferred place.
In June 2015 Karen was appointed the Clinical Director at St Helena Hospice in Colchester. This post was developed as part of the hospice strategy to have a positive impact on the care of all patients across North East Essex who are in the last year of life


Gill Green is a Professor of Medical Sociology in the School of Health and Human Sciences, University of Essex. Gill has been researching aspects of chronic illness since the early 1990s and has multiple publications in peer-reviewed journals on the psychosocial impact of HIV and more recently upon people with other chronic illnesses. She has also been the Principal Investigator on a number of research projects related to socially excluded groups such as the lived experiences of offenders with mental health problems and people living in low income households. She has conducted evaluations in collaboration with local authorities and NHS trusts. Gill is also Director of the NIHR Research Design Service (RDS) for the RDS EoE. The role involves providing research design advice and extensive networking with other national and regional research organisations as well as establishing robust and enduring relationships with lay representatives and organisations to ensure their input into development of research. Gill chairs the RDS Patient & Public Involvement (PPI) strategy group and works closely with INVOLVE the national body.


Jane Lassetter, PhD, RN is an Associate Professor in the College of Nursing at Brigham Young University in Provo, Utah. She has taught and coordinated the required undergraduate course Ethics in Nursing for nearly a decade. Currently she is working toward a graduate certificate in health care ethics through Creighton University’s Center for Health Policy and Ethics. Additionally, she serves as the President-Elect of the International Family Nursing Association and the Governor-at-Large of the Western Institute of Nursing. Prior to her academic career, she worked for many years as a registered nurse at a large, freestanding children’s hospital in Salt Lake City, Utah, where she frequently cared for children and their families who faced extremely difficult situations.


Anna Milberg is a medical doctor, specialist in geriatric medicine, and works at a specialised palliative home care unit in South East of Sweden. She is an associate professor at Linköping University, and her research field is in palliative medicine and geriatrics.

SHEILA PAYNE BA(Hons) RN Dip.N PhD C.Psychol

Professor Sheila Payne is a health psychologist with a background in nursing. She holds an Emeritus Chair at the International Observatory on End of Life Care at Lancaster University, where she was the former Director. During her career, she established and managed three research groups; firstly the Health Research Group at the University of Southampton (1996-2000), secondly the Palliative and End of Life Care Research Group, University of Sheffield (2003-2006) and latterly the International Observatory on End of Life Care, Lancaster University (2009-2014). She was President of the European Association of Palliative Care (2011-2015). Professor Payne has a long track record in palliative care research and scholarship. Her research focuses on palliative and end-of-life care for older people. She currently holds three European Commission Framework 7 programme funded major international grants and has supervised over 35 PhD students. She has published widely in academic and professional journals and published 12 books, with a further book in preparation.


Dr Kate Powis is a lecturer and researcher based at St Helena Hospice, Colchester in the U.K. She teaches modules on the role of spirituality and compassion in palliative and end of life care and children and bereavement on a BSc in palliative and end of life care.  Students are nursing and allied health professionals drawn from a range of settings. Her own background, however, is in philosophy and social science, with a particular interest in psychoanalytic perspectives and the role of the arts and humanities in accessing and expressing the “inexpressible”. Other teaching and research interests are: existential issues in facing death, the ethical challenges of compassionate care of the vulnerable and psycho-social research methodology.


Aileen is a registered nurse who has spent most of her career in nurse education. In 2012 she completed a Doctoral thesis that made a conceptual examination of nurses’ experience of moral distress in response to seemingly futile care orders, in patients who were likely to be at the end of life. After this she took a short-term research post in the end of life research group at Cambridge University, where she contributed to an empirical study that examined the events and decisions that led to patients who were close to the end of life being admitted to hospital. She currently continues as a visiting researcher in that group and is also the module leader for the ‘Return to professional practice’ course at Anglia Ruskin University


The round table part of the workshop is taking place in the Lakeview Room, on the second floor of the new Silberrad Centre, on the Colchester campus of the University of Essex. The afternoon talks are taking place in room 4N.6.1. Directions to each room can be found on our interactive campus map.

To reach Colchester by car from London and South Essex, leave the A12 at the Colchester (A133) exit. If you are approaching from Ipswich, leave the A12 at the exit for Colchester (A1232). You can then follow the road signs to Colchester campus, which is in East Colchester off the A133. The postcode for the Colchester campus is CO4 3SQ, but please be aware that directions from satellite navigation can sometimes be misleading.

We have a number of car parks available on campus and would recommend Valley car park as the nearest to the workshop location. Please note that there are no parking charges on a Saturday.

If you are travelling by train, the nearest station is Wivenhoe. Buses to campus (the 62) leave from right outside the station. Alternatively, buses (the 62) and taxis to campus are available at Colchester North Station. 

For more information about getting here, please refer to the travel page on the main University website.