Improving end of life decision-making

Professor Jenny Kitzinger, Cardiff University, is working with partners across GW4 to improve end of life decision-making for people with limited ability, or power, to make decisions for themselves. This community examines how the decision-making process can be improved to maximise the chances of person-centred care and to support a death that is as positive as possible under the circumstances.

What problem are you trying to address?               

The  ‘Diealog listening tree’ – adorned with people’s comments about death and dying
The ‘Diealog listening tree’ – adorned with people’s comments about death and dying

There is an increasing awareness of the need to improve end of life care, and the challenges of doing so.

Much of the focus has been on people who have full capacity to make their own decisions. The challenge is to extend improvements in care to everyone including those who are extremely old, very frail with multiple diseases, or those who can no longer make their own decision about medical treatments because of severe dementia or catastrophic brain injury.

Changes in demographics and medical treatments mean more people will confront this situation. People with reduced agency are less able to advocate for themselves and ensure they get the right medical treatment.

The Mental Capacity Act 2005 was meant to empower and protect people with reduced capacity and place people at the centre of their own care, but failures in implementation, and challenges in practice, are widespread.

Our research aims to address the ethical, philosophical, practical and policy issues through exploring lived experience and how decisions happen on the ground.

What have you achieved so far?Delegates

We have developed an extensive dialogue with a wide range of stakeholders, working with people across the social and health care sector. Collaborators have included the Office of the Public Guardian, the Alzheimer’s Society, care homes, residents and carer forums.

There has been significant public engagement, over 200 people participated in our open-day event. This included an arts event with paintings, theatre and interactive installations that explored the experience of death and dying. We held a conference for stakeholders discussing potential research agendas and recording their key questions and suggestions.

We have developed six research projects that explore the concept of best interests, reduced agency and good/bad death in law, ethics and the media, understanding and implementation.

How has being part of GW4 benefited your research community?

GW4 funding has enabled community building across the four universities, laying the foundations for sustained collaboration. We have been able to develop ideas, drawing together diverse expertise and methods, which has led to dialogue across a range of areas.

'The empty chair’ – an interactive installation by Su Chard
‘The empty chair’ – an interactive installation by Su Chard

The funding has supported crucial opportunities for dialogue and consultation with diverse stakeholders and public engagement.

Our community also benefited from a tailored workshop award. An external facilitator worked closely with the community to design a workshop to develop our collaborative practices and processes.

Establishing this community has been key for mentoring early-career researchers. They have benefitted from working across boundaries of institutions, disciplines and the academia/real world divide. Another important part of the collaboration has been skill sharing and broadening our own experiences.

It has also been key to developing an ambitious programme of complementary and interlinked research plans and projects.

Plans for the future?

There are six research projects under consideration by funding bodies. These will form a foundation for a bid to conduct a major longitudinal study following people’s care and the decisions made across different sites and in relation to diverse conditions.

Members of this GW4 community are delivering consultancy work for government and charities including an initiative on Understanding the role of care homes in palliative and end of life care, and a report advising how the Welsh Government can promote understanding of Advance Decisions.

The community is facilitating a number of events and debates including the Capacity and End of Life Care – Ethics in Practice and the Centre for Dying and Society conference on the meaning of survival.

We have also prepared two papers for submission to a medical ethics journal.

GW4 community leads

University of Bath: Dr Jeremy Dixon
University of Bristol: Professor Richard Huxtable
Cardiff University: Professor Jenny Kitzinger
University of Exeter: Professor Linda Clare


GW4 Dying Well blog