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Edited by H-M Sass, R M Veatch and R Kimura, Baltimore, Johns Hopkins University Press, 1998, 311 pages, US$48.
End-of-life decision making for mentally incompetent adults is the subject of this scholarly but eminently accessible book. It questions the extent to which attitudes to death and incompetence are determined, on the one hand, by common human factors and the nature of dying or, on the other hand, by cultural and legal influences. The book examines how three countries, America, Germany and Japan, approach the same dilemmas. National law, literature, traditions and general societal attitudes are analysed by authors from those countries. The United States is held up as the epitome of individual choice and self determination, far outstripping the rest of the world in debate and litigation on consent issues. But it is made clear that a six-fold increase in documentation about advance directives only achieved a minimal increase in American usage of them. Japan, at the other end of the spectrum, appears to value family loyalty and group solidarity over self determination. Very different attitudes prevail there towards suffering, death, truth-telling, fate and personal choice. Far from exerting their autonomy, Japanese patients appear to be excluded from decisions.
Germany is portrayed as occupying an intermediate position, more reliant on private discussion than law. German advance directives are rare and family views tend to overrule individual choice, at least in rural areas. Memories of Nazi euthanasia programmes still colour discussion about treatment of incompetent adults. While less reluctant than the Japanese to engage in public debate and litigation around end-of-life issues, Germans trail well behind America in this respect. By chance or design, the book neatly reflects the differing degrees of obsession with personal autonomy: America occupies 90 pages, exactly twice the number devoted to the more private and traditional Japanese approach. Germany comes midway.
Even within America, however, it is clear that some advocates of advance directives are not focusing on personal autonomy. A range of standard model directives, including some drawn up by religious groups, are appended to the book. Instructions for the Valley of the Shadow is the poetic title of the living will recommended by the American Rabbinical Assembly of Conservative Judaism. It goes out of its way to emphasise that “nothing in this directive should be construed, God forbid, as a wish to die; only as a wish to live in accordance with God's desires”.
Much attention is given to the benefits, drawbacks and complexities of trying to plan ahead for one's own incompetence and death. General cultural differences are teased out. People most fixated on personal control are portrayed as least likely to acknowledge their mortality. In America where the issue is much discussed in the media, and where the Patient Self-Determination Act ensures the compulsory offer of advance directives to hospital and home care patients, uptake remains low. Most delegate decisions to relatives. Advance directives are judged to have no discernible effect on treatment but asking the relatives is shown to be no more reliable than a random guess. The Japanese cultural approach emphasises mutuality and avoidance of confrontation. The notion of privacy is lacking and there is, apparently, no indigenous word to describe it. Authority rests with the family rather than the individual and religious beliefs contribute to the notion that a hastened death might disturb the harmony of the universe.
Interesting questions are raised throughout the book about the moral authority of the family's views and how much it matters that these might not be the same as the patient's own wishes. In all three countries, it seems many patients prefer their relatives to be given the leeway to decide contemporaneously rather than be tied by other considerations, including the patient's past views. Although advance directives are developing in Germany, for example, patients fear under-treatment almost as much as over-treatment and worry that resource allocation will intrude into the debate.
The book contains some surprises. The hymnbook of the Bavarian Lutheran church is surely not the first place one would look for a standard model advance directive. Inevitably, however, America is the main focus. Meisel sees the development of advance directives as part of a particularly American search for a magic bullet to resolve situations of moral complexity. He emphasises the limitations of law and warns against equating legislation with progress. The Patient Self-Determination Act, for example, is categorised as “a monumental effort that has borne meager fruit”. Veach sees living wills as typical of the “technical fix” which intrigues Americans: the American psyche seems susceptible to the attraction of a piece of paper which solves profound moral and existential problems. Veatch and Hass both see advance directives as challenging the Hippocratic ethic.
The book introduces many new angles as well as providing a rich resumé of existing literature. As a reference source, it is indispensable for anyone wishing to know more about end-of-life decisions in these three jurisdictions. The prodigious bibliography is well organised by various categories. It includes separate sections on legal precedents, government publications, living wills, books and articles. The collection of living wills is particularly useful. Case vignettes are included in all chapters and some of these are both moving and thought-provoking.
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