24 September 2014

Art and Bioethics: Natural Partners for Collaboration?

By Lawrence Illsley
Sparkle and Dark Theatre Company Sparkle and Dark Theatre Company

The Mason Institute and Wellcome Trust discuss art, bioethics and assisted dying at the University of Edinburgh.

Background
Sparkle and Dark are migrating from London to Edinburgh this August to perform their new show, Killing Roger, at the Underbelly on the Cowgate during the Edinburgh Festival Fringe. On this visit, they want to make an impact on the consciousness of the city, not only with the show but also by bringing an exciting public debate about the issues raised in the play to the University of Edinburgh under the auspices of the Mason Institute.

Killing Roger
In true Sparkle and Dark style, Killing Roger is a thought provoking piece of theatre told through a heartfelt and profound human story. It tells the relationship between an elderly man suffering with chronic emphysema and a young student called Billy. Written by poet, musician and historian L.W. Illsley, the story is inspired by the protracted death of his father from cancer and from the stories his mother used to tell him about her work in the care industry. The crux of the piece comes when Roger asks Billy to help him die. Out of this simple, personal story emerge complex themes which transcend theatre and are currently subject to legal and ethical debate on a national scale.

This new play is essentially about the choices we face when we no longer have control or a connection to the world, when we no longer have freedom or dignity, and ultimately when we find ourselves to be truly alone. It questions what choices there are, and what responsibilities come with them. The so-called ‘right to die’, if there can truly be such a thing, is not an easy subject to discuss openly, yet Killing Roger is an honest and provocative piece which questions the isolation of those alone and in pain, forgotten by a society obsessed with life and unable to talk about death.

To help authenticate the ethical and biomedical content of the show, Sparkle and Dark have worked in association with the British Thoracic Society and the JK Mason Institute for Medicine, Life Sciences and the Law to inform the script and show development. Whilst producing Killing Roger, Sparkle and Dark have formed valuable connections with the Wellcome Trust and the Mason Institute, which have helped to bring the show to the Edinburgh Festival Fringe this year.

Killing Roger is on at 12.40pm every day throughout August (except 13th) at Underbelly, Cowgate. There will also be a dynamic public debate and arts symposium, both hosted by the Mason Institute during the season. The debate will feature speakers representing all sides of the assisted dying debate, and the arts symposium will bring together artists, producers, funders, medical and legal professionals to discuss how the arts can present ethical issues and how this artistic input can be measured, valued and understood.

Discussion: The Social and Political Background
The issue of assisted dying is one which has, in recent years, led to serious discussion in both the public and political fora. High profile cases such as that of Tony Nicklinson, Diane Pretty and Debbie Purdy have all highlighted the issue in the national media, leading to debate occurring in Parliament, hospitals, universities, religious and humanist institutions and other think tanks across the country.

Through advances in modern medicine, we have now reached the prima facie privileged position where we are able to prolong life, though not always to the satisfactory alleviation of pain. Whilst this is a welcome relief in the majority of cases, in a few instances, such as terminal illness, medication cannot provide a simple, if any, solution. In the contemporary medical epoch of patient autonomy, there now exists the issue of whether the patient wishes to continue to take their prescription, especially if they feel quite strongly that their quality of life will not improve. This can sometimes lead to the situation where the patient seeks active intervention to end their life.

The simple fact is that there are limited options available to UK citizens under current legislation. Without entering too much into the legalities of assisted suicide in the UK within the confines of what is essentially a discussion of bioethics and culture, it would appear the only failsafe way to avoid prosecution of those who ‘assist’ is to travel to a jurisdiction where assisted suicide has been legalised, which would seem more than anything to discriminate against the financially insecure. In the last ten years, a number of British citizens have taken this option.

Art and Bioethics: Natural Partners for Collaboration?
Killing Roger is about the extreme case of someone who is suffering with a terminal illness but who has no one else to turn to. Roger is an elderly man isolated from the community, with little money and struggling with his own moral code that won’t allow him to simply give up. He remains in constant pain, but cannot take his own life, and so in desperation he asks Billy to help him die. Roger and Billy are forced to take the law into their own hands in what the organisation Dignity in Dying have characterised as an act of ‘mercy killing’, something which no right-thinking person would advocate, but something that may potentially occur without a satisfactory legal alternative.

Making art about issues such as these can create a platform for free thought and discussion that does not have to be didactic or pass judgement. It is an arena that can connect to the human, emotional, irrational and subconscious parts of these real life experiences in a way that science and politics are often unable to. Instead, it can use the power of storytelling to play out a situation in front of people and allow them to make up their own mind: in this case, whether to judge Billy for his actions, or criticise Roger for putting him in such a position.

Many people have found themselves in the uncomfortable position faced by Billy. The show has already enable people to reflect on their own experiences and many have been inspired to open up and offer their own personal anecdotes.

Beyond any personal experience with such a situation, engagement with a piece of art that describes a pertinent ethical debate naturally leads someone to question what they may do in such a situation. This then leads one to consider the morality of such actions, and on a societal level, this becomes the legal question; that of whether such an action could, or should, be sanctioned by the state. Enter then the legal, political, religious, ethical and – in this case – medical professionals, who have the expertise and power to make substantial change within society.

Conclusion
Links between the arts and these specialised professions can help to open a complex subject up to the public imagination and hopefully encourage people to enter the debate. This open discussion can help to create a stronger society where we are able to bring deep and personal issues into the public domain in order to decide together if and how society could develop.

This post was first published on 30 July 2013.

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