The Law and Ethics of Dementia PDF
Preview The Law and Ethics of Dementia
99mm 171mm 36.5mm 171mm 99mm F o s t a e The Law n r , d H D e and Ethics r o r r i o n of Dementia n g Charles Foster is a Fellow of Green Templeton Also published by Hart T Dementia is a topic of enormous human, medical, h College, University of Oxford and a practising economic, legal and ethical importance. Its importance e barrister. grows as more of us live longer. The legal and ethical Persons, Parts and Property L problems it raises are complex, intertwined and under- How Should we Regulate Human Tissue in the 21st Century? a Edited by discussed. This book brings together contributions Jonathan Herring is Professor of Law at the w Edited by Imogen Goold, Kate Greasley, Jonathan Herring and Loane Skene 2 Charles Foster, from clinicians, lawyers and ethicists – all of them 5 University of Oxford. 0 a world leaders in the field of dementia – and is a m n Jonathan Herring comprehensive, scholarly yet accessible library of all m Israel Doron is Head of the Department of Human Dignity in Bioethics and Law d the main (and many of the fringe) perspectives. It Gerontology, University of Haifa. and Israel Doron Charles Foster E begins with the medical facts: what is dementia? Who t gets it? What are the current and future therapeutic h and palliative options? What are the main challenges i c for medical and nursing care? The story is then taken s up by the ethicists, who grapple with questions o such as: is it legitimate to lie to dementia patients if f that is a kind thing to do? Who is the person whose D memory, preferences and personality have all been e transformed by their disease? Should any constraints m be placed on the sexual activity of patients? Are GPS e tracking devices an unpardonable interference with n the patient’s freedom? These issues, and many more, t i are then examined through legal lenses. The book a closes with accounts from dementia sufferers and their carers. It is the first and only book of its kind, and the authoritative text. Cover designed by Cyan Design www.hartpub.co.uk THE LAW AND ETHICS OF DEMENTIA Dementia is a topic of enormous human, medical, economic, legal and ethical importance. Its importance grows as more of us live longer. The legal and ethical problems it raises are complex, intertwined and under-discussed. This book brings together contributions from clinicians, lawyers and ethicists—all of them world leaders in the field of dementia—and is a comprehensive, scholarly yet accessible library of all the main (and many of the fringe) perspectives. It begins with the medical facts: what is dementia? Who gets it? What are the current and future therapeutic and palliative options? What are the main challenges for medical and nursing care? The story is then taken up by the ethicists, who grapple with questions such as: is it legitimate to lie to dementia patients if that is a kind thing to do? Who is the person whose memory, preferences and personality have all been transformed by their disease? Should any constraints be placed on the sexual activity of patients? Are GPS tracking devices an unpardonable interference with the patient’s freedom? These issues, and many more, are then examined through legal lenses. The book closes with accounts from dementia sufferers and their carers. It is the first and only book of its kind, and the authoritative text. The Law and Ethics of Dementia Edited by Charles Foster Jonathan Herring and Israel Doron OXFORD AND PORTLAND, OREGON 2014 Published in the United Kingdom by Hart Publishing Ltd 16C Worcester Place, Oxford, OX1 2JW Telephone: +44 (0)1865 517530 Fax: +44 (0)1865 510710 E-mail: [email protected] Website: http://www.hartpub.co.uk Published in North America (US and Canada) by Hart Publishing c/o International Specialized Book Services 920 NE 58th Avenue, Suite 300 Portland, OR 97213-3786 USA Tel: +1 503 287 3093 or toll-free: (1) 800 944 6190 Fax: +1 503 280 8832 E-mail: [email protected] Website: http://www.isbs.com © The editors and contributors severally 2014 The editors and contributors have asserted their right under the Copyright, Designs and Patents Act 1988, to be identifi ed as the authors of this work. Hart Publishing is an imprint of Bloomsbury Publishing plc. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission of Hart Publishing, or as expressly permitted by law or under the terms agreed with the appropriate reprographic rights organisation. Enquiries concerning reproduction which may not be covered by the above should be addressed to Hart Publishing Ltd at the address above. British Library Cataloguing in Publication Data Data Available ISBN: 978-1-84946-417-8 ISBN (ePDF): 978-1-84946-819-0 Acknowledgements Dr Rupert McShane, who gave invaluable help in shaping the book and suggesting contributors. Preface Dementia is one of the great and growing facts of our age. Modern medicine has spared us to grow old, and when we grow old, dementia is waiting for many of us. It will steal our neurones, our memories, our independence and our ability to per- ceive our relationships (if not the relationships themselves). It may even (there’s an important debate about this) rob us of ourselves, or allow us to remake ourselves. By and large Western governments, seeing the scary demographics of dementia, have buried their heads in the sand. Insufficient money has been set aside to deal with dementia. It often seems as if, since patients with dementia can’t complain, or can’t complain on the statutory forms, they are presumed not to exist. Even when dementia is acknowledged, it is precisely that—dementia: the problem—that is acknowledged, rather than the people who have the condition. It is attitudes as well as organic disease which steal personhood. So: dementia is unfashionable and frightening. Law and philosophy are slavish followers of fashion. They haven’t given dementia and its victims (patients, carers, communities, all of us) anything like the attention they deserve. That’s a shame. A shame not just for the governments (which can use all the help they can get), and for the victims (for whom even wrong-headed attention would be a comfort), but for the lawyers and the philosophers. They’re missing some fascinating, deeply reper- cussive problems: problems that take us deep into what it means to be human; what it means to legislate; when it is appropriate for the state or anyone else to step into the shoes of another. And doctors, too, are forced by dementia to face the questions that their usual busy-ness helps them ignore: why treat at all? Whom should we treat? Who, indeed, is the patient lying in the hospital bed? This book is an attempt to confront these questions. It has to be a big book, and it has to be a multidisciplinary book. Such work as there has been on the law and ethics of dementia has often suffered because the lawyers haven’t read the ethicists, the ethicists haven’t read the lawyers, neither have read the doctors and even many of the doctors have never had to break the news of the diagnosis to a patient or a spouse, or deal in the early hours with a patient who has started to masturbate in front of the nurses. Some of the juxtapositions will jar. Good. Details of drug doses rub shoulders with Kant. That’s how it should be. They need each other for credibility. An essay about the ethics of dangling therapeutic hopes before the noses of desperate patients is better for sharing space with a piece about what those hopes actually are. Dementia diagnosis, therapy, care, philosophy, economics and law are all in their infancy. Most of the leading thinkers in the field (which includes all of the contributors to this book) are finding their way. Rarely is there any definitively right or wrong answer. That means that the book contains opinions, unreferenced assertions, debates and downright contradictions. If it didn’t, it wouldn’t represent the subject properly. The diseases called, generically, dementia, are mysterious. They generate baffling problems. There are no Ariadnes and no reliable threads in viii Preface this labyrinth. We would like to think that by putting all this material between two covers we have contributed a little to the cross-fertilization which alone can produce the holistic scholarship fit for its enormous subject. All that said, the book had to have some structure. You can only have a decent cocktail if you’re clear at the start about the elements that are going into it. Part I deals with the medical facts about dementia, on the sadly contentious basis that the facts should ground the law and the ethics. Part II deals with the ethics, on the basis that many ethical reflections find their way into legal thinking, and discussion of the law makes more sense if one knows the ethical language in which much of the legal debate is couched. Part III deals with the law, following generally, but not always, the structure of the ethical part: one can often, therefore, look at exactly parallel ethical and legal discussions of the same issue. Where there are no parallel chapters, it is because we thought it would make for unacceptable repetition. Part IV looks at social perspectives—discrimination, physical, financial and other abuse, driving and voting and political participation. Part V is a collection of highly personal pieces— perspectives from carers and a patient. It could be argued strongly that these should have come first, and that by putting them at the end we are giving the impression that patients and carers are less important than the doctors, lawyers and ethicists who discuss them. That is the very opposite of our view. We wanted to give the final word to those most intimately affected by dementia. We hope that readers will come to those perspectives after having read the academic discussion, and in the light of the patient/carer views will sling out—or at least revisit—any misapprehensions into which they have been seduced by the academic sophistry.
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