Exit’s main work is associated with research into self-deliverance (“self-euthanasia” or “rational suicide” as it is also referred to). Yet along the way, living wills have also been a major area of research. We published the first volume of Collected Living Wills (no longer in print) and took research to the Law Commission and the Ethics Department of the BMA, successfully encouraging the inclusion of “values” clauses in the legislation which ensued. Our work arose over concern whether living wills were used enough and, even if they were, whether they were effective.
We were fortunate in being able to use the resources of Glasgow University’s library for our research, for independent researchers are not always so lucky. Academic publishing is largely controlled by major corporations around the world, who effectively harvest enormous sums for access to cutting edge material. Individual authors see very little, or even nothing, in recompense for an article that may have taken months or years to produce and for which the public are charged on average about £30 just to view. Academic books strain the finances even of the students that need them for their studies.
The real problem with this is that it holds back knowledge. Although we now have legislation to increase compliance with living wills, the theory and practice of making them as effective as possible is often poorly understood. Exit’s work was published in an academic book currently listed at retail for almost £240. Although the work is widely quoted by academics it is virtually unobtainable at a reasonable price by the public unless you come across a second-hand copy.
The research is quite old now, but still valid in understanding the nature of living wills, pitfalls to avoid and useful features to keep. Bear in mind that it was written in 1996 in a format that is difficult to transcribe for the web, but we are doing our best to bring it to you free of charge on Scribd (follow the link below). This version was taken from a draft and is imperfectly formatted (English law cases, for instance, have round instead of square brackets) but the essence should be useful for anyone seeking a more technical understanding of the living will process.
Living Wills / Advance Directives on Scribd (free).
Contemporary Issues in Law, Medicine & Ethics (the book from which it is a chapter, on Amazon).
Contemporary Issues in Law, Medicine and Ethics (search inside the book using Google)