AGING: CULTURE, HEALTH, AND SOCIAL CHANGE INTERNATIONAL LIBRARY OF ETHICS, LAW, AND THE NEW MEDICINE Editors DAVID C. THOMASMA, Loyola University, Chicago, U.S.A. DAVID N. WEISSTUB, Universite de Montreal, Canada THOMASINE KIMBROUGH KUSHNER, University of California, Berkeley, U.S.A. Editorial Board SOLLY BENATAR, University of Cape Town, South Africa JURRIT BERGSMA, Rijksuniversiteit Utrecht, The Netherlands TERRY CARNEY, University of Sydney, Australia UFFE mUL JENSEN, Universitet Aarhus, Denmark GERRIT K. KIMSMA, Vrije Universiteit, Amsterdam, The Netherlands EVERT VAN LEEUWEN, Vrije Universiteit, Amsterdam, The Netherlands DAVID NOVAK, University of Toronto, Canada EDMUND D. PELLEGRINO, Georgetown University, Washington D.C., U.S.A. DOM RENZO PEGORARO, Fondazione Lanza and University of Padua, Italy ROBYN SHAPIRO, Medical College ofW isconsin, Milwaukee, U.S.A. VOLUME 10 The titles published in this series are listed at the end of this volume. AGING: CULTURE, HEALTH, AND SOCIAL CHANGE Edited by DAVID N. WEISSTUB Philippe Pinel Professor of Legal Psychiatry and Biomedical Ethics, Faculte de Medicine, Universite de Montreal, Canada DAVID C. THOMASMA Professor and Fr. English Chair of Medical Ethics, Neiswanger Institute for Bioethics and Health Policy, Loyola University of Chicago Medical Center, U.S.A. SERGE GAUTHIER Professor ofN eurology, Neurosurgery and Psychiatry, Centre for Studies on Aging, Faculty of Medicine, McGill University, Canada and GEORGE F. TOMOSSY Ross Waite Parsons Scholar, Faculty of Law, Unive rsity of Sydney, Australia SPRINGER-SCIENCE+BUSINESS MEDIA, B.V. A C.I.P. Catalogue record for this book is available from the Library of Congress. ISBN 978-90-481-5896-6 ISBN 978-94-017-0677-3 (eBook) DOI 10.1007/978-94-017-0677-3 Printed an acid-free paper AU Rights Reserved © 2001 Springer Science+Business Media Dordrecht Original1y pub1ished by K1uwer Academic Publishers in 2001 Softcover reprint of the hardcover 1s t edition 2001 No part of the material protected by this copyright notice may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without written permission from the copyright owner. TABLE OF CONTENTS Preface ..................................................................................................................... vii Acknowledgments .................................................................................................... xiii Contributors ............................................................................................................. xv PARADIGMS PATRICIA M. THANE Changing paradigms of aging and being older: An historical perspective ................. I GEORGEJ. AGICH Implications of aging paradigms for bioethics ......................................................... 15 JOHN MCCALLUM Health in the "grey" millennium: Romanticism versus complexity? ....................... 29 SOCIAL RESPONSES TERRY CARNEY Protecting aged citizenship: Rethinking the "mutuality" of state and civil society? ...................................................................................................... 43 DANW. BROCK Discrimination against the elderly within a consequentialist approach to health care resource allocation ............................................................................. 65 MARSHALL B. l(App Therapeutic jurisprudence and American elder law ................................................. 83 LINDA S. WHITTON Finding the elder voice in social legislation ........................................................... 101 NICOLE DELPEREE European social policy for the elderly .................................................................... 119 MARTHA PELAEZ & ALEXANDRE KALACHE Aging in developing countries: A public health and human rights issue ............... 145 v Vl WEISSTUB, THOMASMA, GAUTHIER & TOMOSSY CULTURAL DIMENSIONS PETER H. STEPHENSON Aging and dying in cross-cultural perspective: An introduction to a critical cross-cultural understanding of death and dying .................................................... 161 ANNE LEONORA BLAAKILDE Old age, cultural complexity, and narrative interpretation: Building bridges in a 2151 Century world of diversity ........................................................................ 175 CHERRY RUSSELL, DENISE TOUCHARD, HAL KENDIG & SUSAN QUINE Foodways of disadvantaged men growing old in the inner city: Policy issues from ethnographic research .................................................................................... 191 REFLECTIONS GEORGEB. PALERMO The affective alienation of the elderly: A humane and ethical issue ...................... 217 RENZO PEGORARO Reflection on aging: A time to live and to share .................................................... 231 Index ....................................................................................................................... 245 PREFACE Culture, Health, and Social Change is the first of three volumes on Aging conceived for the International Library of Ethics, Law, and the New Medicine, followed by Caring for our Elders and Decisions at the End of Life. We have assembled this collection of essays to include perspectives from colleagues from a range of disciplines - history, medicine, philosophy, anthropology, sociology, nursing, and law. These contributions only scratch the surface of what are a great number of socially relevant issues that merit investigation. Indeed, it is clear from this series of reflections why "aging" commands such an expansive multidisciplinary body of scholarship that goes well beyond its study merely as a biological process. Our foremost objective is that the chapters included in this volume stimulate further dialogue and contemplation in this vitally important field of inquiry. PARADIGMS Demographic studies are consistently predicting the increasing proportion of "aged" members in our global population. Corresponding pressures on the allocation of public and private resources will make it more difficult for individuals and governments to balance the needs of present and future generations. This is (and promises to be) a daunting task for developed nations, not to mention for emerging economies. Not surprisingly, planning for the health of an aging society raises profound issues in law, ethics, and public policy. Yet how we approach and understand aging as a social phenomenon may have indelible effects on existing and future "elders." Understanding cultural preconceptions of aging and how these have changed - or should change - is therefore of immediate relevance. It is appropriate that we begin this series on Aging with an historical perspective. Patricia M. Thane cautions us against the pitfalls of prediction, that is, assuming that paradigms based upon the experience of past or present generations can be extrapolated into the future. Clearly, the life experience of someone in their 80s, born before World War I, was markedly different from that of a baby boomer, the latter having been exposed (at least in developed nations) to vastly improved living standards and medical advances. Likewise, while fixed age thresholds are essential for demographers to make statistical comparisons over time, it is important to acknowledge that "'old people,' though often referred to as an undifferentiated mass, is the most disparate of age groups," with definitions of aging having varied at different times, in different contexts, and for different social groups. Prof. Thane reminds us that "old age is and always has been the most complex of stages of life," and that negative perceptions of aging, such as the belief that family ties have eroded in western societies, are not necessarily accurate. It is important to recognize vii Vlll WEISSTUB, THOMASMA, GAUTHIER & TOMOSSY the fallacies of negative popular and official perceptions that continue to shape government policy and interactions between older people with family and professionals, but which seem "increasingly at variance with the potential capacities of very many older people." Reflections on aging also form a core component of the bioethics literature. In this area, George J. Agich challenges what he describes as the single-most influential paradigm, the "life span model," which involves "a set of normative beliefs that conceive aging as a conventional process of development through distinct stages or phases, each composed of a set of characteristic features or tasks." He argues that if one is attentive to autonomy-enhancing aspects of aging research, rigid reliance on the life span paradigm is problematic as it fails to account for the malleable nature of aging. Bioethicists have failed to critically analyze the conceptual and value assumptions underlying the life span model, and cannot thereby provide an adequate framework to interpret ethical issues associated with aging. The author submits that bioethicists must overcome this way of thinking and be open to alternative normative structures. John McCallum explains why common metaphors of aging - such as, pessimistic (the elderly as a burden on society) and romantic (good health and long life available to all) - do not adequately respond to the complex range of ethical and political issues in an aging society. He illustrates how comparing disability-adjusted life expectancies provides a better measure of the health of a population, thus highlighting the well-supported policy objective of maximizing periods of life free of disability, rather than merely increasing length of life. In the context of broad historical changes, trends in disability have been characterized by a theory of epidemiological transition, which identifies a series of sequential stages of disease types and their prevalence. Prof. McCallum argues that the last phase ("compression of morbidity") "does not capture the realities of disease in an aging and affluent society." Instead, he proposes a new phase, "substitute and comorbid disease," which better reflects the complexity of co-existing diseases and expectation of others as death approaches. It recognizes the importance of understanding complex events and syndromes, as opposed to single diseases, in the context of national health trend monitoring and the development of best practices guidelines or evidence-based practice methods. SOCIAL RESPONSES Having canvassed various paradigms on perceptions of aging, the next focus is to examine responses to aging (including their social and philosophical underpinnings), particularly with regard to implementing legal structures to support - and where necessary, protect - older citizens. These chapters demonstrate why progressive policy formulation requires constant re-evaluation of existing policies in order to determine their efficacy and fidelity to their underlying philosophical or social foundations. WEISSTUB, THOMASMA, GAUTHIER & TOMOSSY ix Approaching this question from a socio-legal perspective, Terry Carney makes the following observation: The quality of law, civil society, and state services is ultimately to be judged by the adequacy of their engagement not only with the atomized "individual," but also with their micro communities of family, friends, and local communities. To do this, they must reflect something of the richness and diversity of human existence. With this in mind, Prof. Carney contrasts traditional and "new" welfare state theories, that is, notions of the state as guarantor or distributor of fairness and protection of vulnerable persons versus ideas of "mutual obligation" that underlie the privatization of welfare. He points out that while guardianship laws and services aim to protect, they may also oppress or prove ineffectual; advancing individual autonomy, although important, should not be an exclusive goal if it condemns the lonely or friendless to their own devices or neglects those who failed to plan (or plan adequately) for their future needs. He counterpoises ideas of aged citizenship as "freedom from" (external threat) with "freedom to" (actively engage in society). Grounding his analysis in guardianship laws and services, he advocates the pursuit of a model of "republican citizenship" through practical measures (such as tribunals instead of courts) demonstrated to engage those networks, together with adequate public funding to enable them to serve all aged citizens able to benefit from them. He concludes that guardianship demonstrates the theoretical synergy between new welfare and ideas of globalization and "postmodernism," but that a more inclusive paradigm is required, one that expresses a communitarian conception of the aged as active citizens connected to networks of relations with close others. Policies must not only be evaluated, but also monitored to obviate undesired effects. For example, an obvious dilemma presented by an aging population for all nations is the allocation of healthcare resources. A common method for assessing various models is on the basis of cost-effectiveness or cost-benefits, and which employs the concept of a quality adjusted life year (QAL Y). Prioritization of health care services in this manner raises a host of ethical issues. Dan W. Brock examines these questions against the philosophical framework provided by consequentialism, which provides that "human actions are morally right if, and only if, they produce at least as good consequences as any alternative action open to an agent." Prof. Brock explains why a consequentialist or cost-effectiveness analysis, though not using age as a criterion, in fact discriminates against the elderly, and is hence morally unacceptable. Marshall B. Kapp evaluates elder law through the analytical lens of therapeutic jurisprudence, which holds out the view that law itself is a social force that can have a therapeutic effect. This method would determine whether specific legal enactments in the United States intended to benefit older persons actually accomplish their objectives. He examines relevant empirical research, as well as legal and ethical commentary. His goal is not to answer this question in its entirety, but to identify a policy-relevant research strategy to explore it more fully. As Prof. Kapp proposes, "the ultimate policy objective ought to be to pair, as exactly as possible, specific x WEISSTUB, THOMASMA, GAUTHIER & TOMOSSY regulatory requirements with desired, beneficial outcomes, while allowing everyone involved the greatest feasible amount of flexibility to pursue the public's goals." In contrast, the concern expressed by Linda S. Whitton is not whether legal enactments are true to their goals, but whether they resound with the voices of those for whom they were implemented. In her retrospective analysis, she approaches this question by first examining how our aging culture shapes the substance and application of selected pieces of American social legislation, or whether it is the other way around. Prof. Whitton reasons that social legislation in the twentieth century has been significantly influenced by our aging culture, which is comprised of "beliefs, behaviors, and attitudes about age, aging, and the aged." She concludes that we must re-examine age-based legislation in cases where the perceptions upon which they are founded are false or rooted in negative stereotypes, and in order to accomplish this, embrace our own aging as a normal part of life. A human rights-based approach is the focus of the next two chapters. They illustrate the challenge of locating a set of universal values in aging. Nicole Delpen!e provides us with a review of European social policy for the elderly. She contrasts principles promoted by the United Nations, World Health Organization, and Council of Europe, and compares various states within the Union. She notes that while European consensus is "far from having been reached," due to "strong philosophical differences" and different historical and cultural traditions, one can nonetheless note convergence. From these principles, she argues for "vigorous allocation of resources" in order to ensure a decent quality of life for elderly in the European states. Martha Pelaez and Alexandre Kalache address the very different situation of aging in developing countries. They ask whether persons are more likely to suffer human rights violations because of age, such as in the context of discrimination (with respect to health status, labor force participation, and intergenerational transfers) and vulnerability (lack of capacity to satisfy basic needs). This question is difficult to answer because "old age, declining health, poverty, and inequity are intimately linked to each other for people in developing countries." The response, therefore, requires action across local, national, and international levels, and "must be grounded in strong values that set equity objectives and assesses the impact of present policies on the health of persons regardless of age with special provisions for the most vulnerable persons." CULTURAL DIMENSIONS The human experience of aging is subjective, being influenced by factors such as one's economic or social status, level of education, health, history, race, religion or beliefs, familial ties, geographical location, and gender. Indeed, the diversity with which aging is perceived, anticipated, and endured, both within and across cultural groups, defies attempts to define a universal "aging culture," and understanding these specificities may expose cracks in what might otherwise appear to be sound social policy based on impressive (but general) demographic data. Ensuring that