Secretarial: I Work For .. Tamora langley is information officert for the Voluntary Euthanasia Society and Dr Michael Irwin: To me, euthanasia is about quality of life

Katie Sampson
Tuesday 18 May 1999 23:02 BST
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A lot of people do a double take when I tell them what I do, although generally the response is one of slight amusement and curiosity; only occasionally do people say "oh, how morbid". Although euthanasia is an ethically complicated area of human rights, many people have an experience of the real issues around the right to die, and appreciate the need to break through the taboo that exists around death. Our Society is all about empowerment.

We work within the law to change the law to allow the choice of voluntary euthanasia with strong safeguards. We also provide living wills, which are legally binding documents for refusing invasive life-prolonging treatment in advance.

I gained an interest in euthanasia while studying human and civil rights as part of my course at University. The idea of working for an organisation where the whole motivation for being there is to uphold choice was very appealing to me. At University I dealt with the complex philosophical arguments around an individual's right to die, but now I am able to lobby, campaign and inform in a practical fashion. My job is all about communication, promoting medical autonomy and trying to counter paternalistic attitudes within the medical establishment.

A lot of people mistakenly believe that a family can ask for withdrawal of aggressive treatment if they know that the patient does not want his or her life artificially prolonged. It's so distressing to have to inform them that there is nothing they can do to stop the suffering, and to see their frustration on learning too late that the treatment could have been avoided had the patient made a living will.

Our office structure is quite circular and works as a co-operative which allows us to be both direct and down to earth. I'm allowed quite a lot of autonomy and my remit is broad. My average day includes overseeing our volunteers who help with the answering of general queries. I reply to the more in depth queries which come by e-mail, phone and post from all over the world. I even answered an e-mail from Moldova the other day. The questions can include anything from how to hunt down a reference book, or to video a request to know more about treatment refusal in a particular country. Another job of mine is to organise speakers for schools and groups, and promote living wills at conferences. For example, I recently had a stand at the TUC conference in Blackpool, where there was a lot of interest and support from the delegates - particularly the Bakers Union, who brought me cakes. I also manage our library, a world archive on the Right to Die. I buy in books and try to keep abreast of news and articles on the subject of euthanasia, synthesising the information I receive and developing a new library system. Unfortunately I never have enough time to deal with the constant flow of information into the archive, so sometimes I feel a bit overwhelmed.

Dr Irwin was one of the two people who originally interviewed me, and I immediately recognised that one of the best things about him is that he speaks to everyone on the same level. He used to be Medical Director of the UN yet he is never patronising or condescending. Although he has formally retired he's a very active guy, full of knowledge and very humorous, unassuming and down to earth. He often works with me as a volunteer, arriving in the morning with a packet of chocolate biscuits, ready to help out with the enquiries. He's a real sweetie, but also courageous and driven by a sense of equality and justice. He feels outraged by the hypocrisy of some doctors who, while being able to guarantee that they won't be kept alive against their wishes themselves, won't offer the same privilege to ordinary patients.

In my experience, many people who are seriously ill are keen to live out their lives for as long as possible, particularly when palliative care can be so marvellous. Many of our terminally ill supporters are very positive, which demonstrates that there is a clear distinction between having an incurable illness and being in a clinical depression. Yet occasionally people have concerns about the function of the society, largely due to misconceptions about our aims. We always operate within the law, and don't provide information about killing yourself. But about 17 years ago, under the name of Exit, the society was governed by a very different policy, under a misguided leadership. Our former General Secretary went to prison for helping someone to die, and the Society was involved in a court case over a booklet it published which provided a guide to suicide methods - something we would never condone now. No one here is qualified to judge whether a person is genuinely incurably ill rather than clinically depressed.

I've only been here for eight months, but I am very happy with my working environment. I really enjoy dealing with ethical issues that affect ordinary people, and love having a job that engages my mind. I can only really cope with work if I believe in what I'm doing, so I consider myself lucky to have this job in an economy dominated by commercialism.

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