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Festival of death to confront end-of-life taboos

02 May 2013

What makes for a good death? How can health care policy and provision support us at the end? What do we need to do as individual and within families? How do you write a ‘living will’? Should patients be able to request an ‘assisted’ death?

These are just some of the questions that will be posed to members of the public in an upcoming Cardiff-based festival devoted to confronting end-of-life issues.

The Before I Die festival is organised by Cardiff University and will run from the 11th-21st of May at various venues across the city. The festival will host a series of cross-arts events linked to the theme of death and dying, as well as the celebration of life.

Curated by Jenny Kitzinger, a Professor of Cardiff University, the festival seeks to inspire, inform and raise debate. Professor Kitzinger’s interest in curating the festival grew from her research into people’s experiences of having a loved one in a long-term coma and their thoughts on what the patient themselves might have wanted in this situation, and what constitutes ‘meaningful life’ and allows for a ‘good death’.  Speaking of the festival, she said:

"I have become convinced we urgently need to talk about end-of-life issues as individuals and as a society. I want this festival to provoke conversations with family and friends about end-of-life wishes, to support us in thinking about our own mortality, to allow us to reflect on grief and loss, and to help us develop the social and policy context to support as good a death as possible for each of us."

The festival arrives at a particularly pertinent time for Wales as it reaches a juncture in its ongoing debate with issues pertaining to death and dying. On the 17th of April the Welsh Government launched the "Delivering End of Life Care" plan, which sets out its expectations of NHS Wales, and its partners, to make end of life care consistently good across the country.

Although the festival is the first of its kind in Wales, it is part of a growing social movement to reflect on how we manage death and dying and is linked to a network of events across the UK for ‘dying awareness’ week.

From small beginnings the festival has grown to include academics from across the humanities schools at Cardiff University and collaborations with national arts organisations, artists and community groups.

Events include art exhibitions, film screenings, musical performances and a walking tour of Cardiff’s Cathay’s cemetery.

Highlights from the festival include the following:

‘An Instinct for Kindness’
Chris Larner (Saturday 18 May, 7-9pm. Venue: Sherman Cymru)

In November 2010, Chris Larner accompanied his chronically ill ex-wife to Switzerland's Dignitas clinic. He came home with an empty wheelchair and a story to tell. This moving, bittersweet show reflects on the circumstances, morality and humanity surrounding the journey. In a candid, poignant and sometimes comic performance, Chris explores both the profound personal implications and the wider ethical considerations of the contentious issue of assisted dying.

The show premiered at the Edinburgh Fringe 2011, where it won the coveted Scotsman Fringe First Award and was featured on BBC's Newsnight Review as a highlight of the festival.

‘Re-thinking the Organisation of Death’
Dr Andrew Edgar (Cardiff, ENCAP), Dr Sally Anstey (Cardiff School of Nursing and Midwifery),
Dr Susanne Gibson (SANE), Dr Nicola Pease (Cardiff School of Medicine) - (Tuesday 14 May, 1-3pm. Venue: Cardiff University Heath Park Campus)

Dr Andrew Edgar, of Cardiff University's Centre for Applied Ethics, leads a panel exploring the moral underpinnings of the treatment of death and dying within our national health system.  

Panel members will speak from their personal and professional experience in order to address the ways in which the process of dying is handled within the health care system, and the way in which it should be handled. Reflections will address the pressures placed upon patients, their families, and the medical staff.  

‘Advance Decisions: Documenting End-of-Life Wishes, the Legal and Ethical Framework’
Celia Kitzinger (Monday 20 May, 6-8pm. Venue: Cardiff Law School)

This panel of prominent academics and practitioners examines the role of 'Advance Decisions' (previously known as 'Living Wills') - written statements about what medical treatments an individual wants to refuse (e.g. cardiopulmonary resuscitation or artificial nutrition and hydration) if they become unable to make such decisions for themselves (e.g. because they are in a permanent vegetative state or have severe dementia). 

The speakers will outline the evolution of this part of the law in recent years in England and Wales (things changed in 2007), discuss how it varies in different countries, and reflect on the social, political and personal implications.

The panel will be followed by the opportunity to ask questions and debate the issues and discussion can continue afterwards over refreshments and online via Twitter*.

Other mortality centred events will include film screenings, humanist discussions about alternative burials, poetry readings and music recitals, lectures, opera, ballet and ‘Before I Die’ comment boards for members of the public to express their aspirations for their lives, as well as their end-of-life wishes.

More information about the Festival and its events can be accessed by visiting its homepage: or by accessing the events calendar.

*Join the conversation on Twitter: #CUBefroreIDie


Useful links:

Before I Die festival

Notes to Editors:

Useful facts about issues relating to death and dying:

·       Around 70% of people would prefer to die at home, yet of the 500,000 people who die each year in England, around 60% die in hospitals

Source: Dying Matters NatCen Survey, 2009.

·         In 2006 In England and Wales 290,000 people died in hospital, 95,000 died at home, 47,000 people died in care homes with nursing, 33,000 in other care homes, and 24,000 in hospices.

Source: National Council of Palliative End of Life Care Manifesto 2010, 2009

·         Only 1% of people in a YouGov poll carried out for the Demos report Dying for Change said they wanted to die in a care home. Yet by 2030, more than 20% of deaths will be in care homes. Only 7 per cent said they wanted to die in hospital. Yet about 58 per cent of deaths take place in hospital and the figure will rise to close to 65 per cent by 2030.

Source: Dying for Change Report, 2010.

·         A recent survey found that whilst 68% of people said they were comfortable talking about it death, less than a third (29%) of people have discussed their wishes around dying.

Source: Dying Matters NatCen Survey, 2009.

·         60% of adults don't make a will.

Source:, 2013.

Cardiff University is recognised in independent government assessments as one of Britain’s leading teaching and research universities and is a member of the Russell Group of the UK’s most research intensive universities.  Among its academic staff are two Nobel Laureates, including the winner of the 2007 Nobel Prize for Medicine, University Chancellor Professor Sir Martin Evans.  Founded by Royal Charter in 1883, today the University combines impressive modern facilities and a dynamic approach to teaching and research. The University’s breadth of expertise encompasses: the College of Humanities and Social Sciences; the College of Biomedical and Life Sciences; and the College of Physical Sciences, along with a longstanding commitment to lifelong learning. Cardiff's three flagship Research Institutes are offering radical new approaches to neurosciences and mental health, cancer stem cells and sustainable places.

For further information:

Tomas Llewelyn Barrett
Public Relations
Cardiff University
Tel: 029 20 875 596
Mobile: 07950792532