Regulating Long-Term Care Quality

Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Regulating Long-Term Care Quality The number of elderly people relying on formal long-term care services is dramatically increasing year after year, and the challenge of ensuring the quality and financial stability of care provision is one faced by governments in both the developed and developing world. This edited book is the first to provide a comprehensive international survey of long-term care provision and regulation, built around a series of case studies from Europe, North America and Asia. The analytical framework allows the different approaches that countries have adopted to be compared side-by-side and readers are encouraged to consider which quality assurance approaches might best meet their own country’s needs. Wider issues underpinning the need to regulate the quality of long-term care are also discussed. This timely book is a valuable resource for policy makers working in the healthcare sector, researchers and students taking graduate courses on health policy and management. vincent mor is the Florence Pirce Grant Professor of Community Health in the School of Public Health, Department of Health Policy and Practice at the Brown University School of Public Health. He is also Senior Health Scientist at the Providence Veterans Administration Medical Centre (Health Services Research Service). His research focuses on the organizational and healthcare delivery system factors associated with variation in use of health services, and outcomes experienced by frail and chronically ill persons. tiziana leone is a lecturer in demography in the Department of Social Policy at the London School of Economics and Political Science. Dr Leone’s research interests focus on demography and health policy. She is particularly interested in reproductive and health systems in developing countries as well as health and ageing in Europe. anna maresso is a research officer at LSE Health and the European Observatory on Health Systems and Policies at the London School of Economics and Political Science. Her research focuses on the healthcare systems of western Europe and comparative health policy. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Health Economics, Policy and Management Series Editor Professor Elias Mossialos, London School of Economics and Political Science This series is for scholars in health policy, economics and management. It publishes texts that provide innovative discourses, comprehensive accounts and authoritative approaches to scholarship. It also creates a forum for researchers to participate in interdisciplinary conversations on contemporary issues in healthcare. Concerns in health policy, economics and management will be featured in the context of international healthcare practices and ongoing discussions on the latest developments in scholarly research and theoretical issues from a variety of perspectives. Presenting clear, concise and balanced accounts of topics, particularly those that have developed in the field in the last decade, the series will appeal to healthcare scholars, policy makers, practitioners and students. published titles: Performance Measurement for Health System Improvement: Experiences, Challenges and Prospects Edited by Peter C. Smith, Elias Mossialos, Irene Papanicolas and Sheila Leatherman Health Systems Governance in Europe: The Role of European Union Law and Policy Edited by: Elias Mossialos, Govin Permanand, Rita Baeten and Tamara K. Hervey forthcoming titles: Private Health Insurance and Medical Savings Accounts: History, Politics, Performance Edited by Sarah Thomson, Elias Mossialos and Robert G. Evans © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Regulating Long-Term Care Quality An International Comparison Edited by v i n c e n t mo r Brown University, Rhode Island tiziana leone London School of Economics and Political Science a n na m a r e s s o London School of Economics and Political Science © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information University Printing House, Cambridge CB2 8BS, United Kingdom Published in the United States of America by Cambridge University Press, New York Cambridge University Press is part of the University of Cambridge. It furthers the University’s mission by disseminating knowledge in the pursuit of education, learning and research at the highest international levels of excellence. www.cambridge.org Information on this title: www.cambridge.org/9781107665354 © Cambridge University Press 2014 This publication is in copyright. Subject to statutory exception and to the provisions of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press. First published 2014 Printed and bound in the United Kingdom by Clays, St Ives plc A catalogue record for this publication is available from the British Library ISBN 978-1-107-04206-3 Hardback ISBN 978-1-107-66535-4 Paperback Cambridge University Press has no responsibility for the persistence or accuracy of URLs for external or third-party internet websites referred to in this publication, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Contents List of tables, figures and boxes List of contributors page viii xii xvii Foreword PART I: Introduction A framework for understanding regulation of long-term care quality vincent mor 1 Chapter 1 PART II: Long-term care quality systems based on ‘professionalism’ Performance measurement in long-term care in Austria k a i l e i c h s e n ri n g, f r éd é r i q u e l am o n t a g n e g o d w i n , a nd r e a s c h m i d t , r i c a r d o ro d r i g u e s a n d g e o rg r u p p e 3 29 Chapter 2 Monitoring the quality of long-term care in Germany v j e n ka g a rm s - h o m o l o vá a n d re i n h a rd b u s s e 33 Chapter 3 Quality monitoring and long-term care in Switzerland g u i d o ba r t el t, r u ed i gi lg e n, d a n i e l g r o b a n d t h om as m ü nz e r 67 Chapter 4 Japan’s long-term care regulations focused on structure – rationale and future prospects n a ok i i ke g a m i , t o m o ak i i s h i b a s h i a n d ta k a s h i a m a no 102 Chapter 5 121 v © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information vi Contents PART III: Long-term care quality systems based on regulatory inspection frameworks 145 Chapter 6 Regulating long-term care quality in Australia l e n c . g r a y , d a v i d j. c ul l e n an d h a ro l d b. l o m a s Regulating the quality and safety of long-term care in England j ul i e tt e m al l ey , j a c q u et t a h o l d er , r a ch a e l d o d g s o n a n d s am an t h a b o o t h 149 Chapter 7 180 Chapter 8 Quality monitoring of long-term care for older people in The Netherlands j o s m . g . a. s c h o ls , d in nu s h . m . f ri jt er s, r u u d g . i . j . m . ke m p e n a n d j a n p . h . h am e r s 211 Chapter 9 The regulatory structure of Spanish long-term care: the case of Catalonia’s service structures and quality assurance systems s e r g i o a ri ño b l as c o , m er i t x el l s o lé , g lo r ia r u b e r t , j o s é m . s a n j u a n an d j o a n g i l 240 PART IV: Long-term care quality systems based on data measurement and public reporting 265 Chapter 10 Monitoring the quality of long-term care in Finland h a r ri et f in n e- so v er i , t ei j a h a m m a r , a n j a n o r o , s ar i a n t t i l a an d p äi vi vo u t i l ai ne n Chapter 11 Regulation of long-term care in the United States d a v i d st e v e n s o n an d je f f r e y b r a m s o n Long-term care for the elderly in Canada: progress towards an integrated system j o h n p . h i r d e s an d v a h e k e h y a y an 269 289 Chapter 12 324 Chapter 13 Regulating the quality of long-term aged care in New Zealand b r i g e t t e m e e h a n a nd n i g e l m i l l a r © in this web service Cambridge University Press 357 www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information vii Contents PART V: Long-term care quality systems and developing regulatory systems Quality monitoring of long-term care in the Republic of Korea h y e- yo u n g j u n g , s o o ng - n a n g j a n g , j ae e u n s e o k a n d s o o n m an k w o n 383 Chapter 14 Long-term care in China: reining in market forces through regulatory oversight z h an l i a n fe n g, x i n p i n g g u a n , xi ao t i a n fe n g, c h an g l i u , he y i n g je nn y z h an a n d v i n c e nt m o r 385 Chapter 15 PART VI: Conclusion 409 445 Chapter 16 Regulating quality of long-term care – what have we learned? t i z i a na l eo n e , an n a m a re s s o an d v i n c en t m o r 447 Index 477 © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Tables, figures and boxes Tables 2.1 Staffing ratio and staffing structure in Austrian residential care facilities by region page 44 2.2 Selected features of care home inspection stipulated by Austrian regions 49 2.3 Overview of the E-Qalin model to assess and improve the quality of care homes in Austria 57 3.1 Obligations and competences of the Medical Review Boards at the state level (MDK) and the Medical Review Board of the Federal Association of Sickness Funds (MDS) 78 3.2 Examples of external quality certificates and audits used in the German long-term care sector 90 4.1 Population growth and trends in long-term care institutions and home-based long-term care in Switzerland, 2000–2009 104 5.1 Expansion in number of LTCI service users in Japan, May 2001–May 2009 125 5.2 Staffing regulations for institutional care in Japan 127 5.3 Facility regulations for institutional care in Japan 128 5.4 Regulations for home- and community-based care agencies in Japan 130 6.1 Residential and community care quality regulation in Australia 164 7.1 Numbers of providers in England by ownership and type of service at 31 March 2010 (percentage shown in brackets) 183 7.2 The Essential Standards of Quality and Safety and their relationship to the regulations in England 186 viii © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Tables, figures and boxes 7.3 Findings from CQC reviews of compliance for care homes in England by home type and standard, October 2010 to March 2011 7.4 Findings from CQC reviews of compliance of home care agencies in England by standard, October 2010 to March 2011 7.5 Number of inspections or reviews conducted by CQC in England across ASC providers per year, 2002/03 to 2010/11 8.1 Healthcare, social services, and housing for older people in The Netherlands 8.2 Health and long-term care legislation in The Netherlands 8.3 Main aspects of long-term care organizations’ quality of care in The Netherlands 8.4 Overview of quality indicators in long-term care developed by the Steering Group on Responsible Care, The Netherlands 9.1 Socio-demographic indicators and some long-term care services characteristics in Spain and Catalonia, 2010 9.2 Global staffing ratio per resident in the nursing home sector in Spain – regional government average in 2008 and mandated ratios in 2011 9.3 Results from PLAENSA survey on the level of residents’ satisfaction with skilled nursing facilities in Catalonia, 2003, 2007, 2010 9.4 Quality indicators related to long-term care in the Catalan Outcomes Centre’s data set 11.1 US State variation in nursing home deficiencies and complaints 11.2 Information available on the Nursing Home Compare public reporting website, USA 14.1 Assessment grades for long-term care eligibility status in South Korea 14.2 Residential care benefits and home care limits in South Korea, 2011 14.3 Domains of long-term care evaluation and weighted scores in South Korea 15.1 Officially classified types of elder care facilities in China 16.1 Classification of countries by broad regulatory approach © in this web service Cambridge University Press ix 195 198 202 213 220 224 229 243 248 253 257 305 311 390 392 399 427 448 www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information x Tables, figures and boxes 16.2 Centralization and decentralization in the regulation of public long-term care 16.3 Long-term care regulatory function undertaken by countries 455 464 Figures 2.1 Responsibilities of the federal and regional governments in long-term care in Austria 3.1 Legal responsibilities within the long-term care sector in Germany 4.1 Relative number of beds in nursing homes per 100 people aged 80 or over (expressed as a percentage) by Swiss canton, 2008 4.2 ‘Prevalence of severe pain’ quality indicator in the City of Basel canton, 2003–11 4.3 Prevalence of restraint use in Ticino canton, 2006–11 6.1 Australian agencies involved in residential aged care quality regulation 7.1 An example QRP for Standard 13 in England 9.1 Dependency Assessment Process in Spain 9.2 Quality indicators and dimensions for nursing homes in Catalonia, 2010 9.3 Extract from first public reporting exercise on skilled nursing facilities with mid-term care beds in Catalonia, November 2010 10.1 Provision of long-term care services in Finland, 2009 and 2010 10.2 Number of municipalities in Finland using interRAI instruments, 2000–12 10.3 Number of bi-annually assessed older people in Finland according to long-term care setting, 2000–12 10.4 Use of hypnotic drugs in long-term care units in Finland, 2001–12 11.1 Graphical representation of some of the entities involved in long-term care regulation in the United States 14.1 Trends in the number of long-term care recipients in South Korea, 2005–11 © in this web service Cambridge University Press 41 73 105 116 116 157 192 246 250 258 271 282 282 283 297 389 www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Tables, figures and boxes 14.2 Assessment process in South Korea to determine longterm care needs 14.3 Trends in the number of long-term care providers in South Korea, 2005–11 14.4 The qualification process for certified care workers in South Korea 15.1 Growth of elder care homes in selected Chinese cities, 1952–2009 15.2 Administrative and regulatory structure of aged care services in China xi 391 393 403 416 423 Boxes 3.1 Long-term care decision-making powers by different levels of government in Germany 7.1 Explanation of the Quality and Risk Profile and underlying intelligence sources, England 10.1 Government recommendations in Finland for long-term care coverage of those aged 75 or older according to type of care © in this web service Cambridge University Press 72 191 271 www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Contributors takashi amano, Research Scientist, Dia Foundation for Research on Ageing Societies, Tokyo, Japan. sari anttila, Senior Medical Officer, National Supervisory Authority for Welfare and Health (Valvira), Helsinki, Finland. sergio ariño-blasco, Associate Professor in Geriatric Medicine at Universitat Internacional de Catalunya and Director of the Geriatrics Department at the Granollers General Hospital, Barcelona, Spain. guido bartelt, BBP Healthcare Consultants and Partner at Q-Sys AG, Switzerland. samantha booth, Analysis Development Manager, Intelligence Directorate, Care Quality Commission, United Kingdom. jeffrey bramson, Harvard Law School Class of 2012, Cambridge MA, United States. reinhard busse, Professor and Department Head for Healthcare Management at the University of Technology Berlin and Associate Head of Research Policy at the European Observatory on Health Systems and Policies. david j. cullen, Adjunct Senior Fellow, Australian Centre for Economic Research on Health, Australian National University and Assistant Secretary, Strategic Policy Unit, Australian Department of Health and Ageing, Canberra, Australia. rachael dodgson, Head of Regulatory Design, Care Quality Commission, United Kingdom. xiaotian feng, Professor and Chair, Department of Sociology, Nanjing University, China. xii © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information List of contributors xiii zhanlian feng, Senior Research Public Health Analyst, Aging, Disability and Long Term Care, RTI International, USA. harriet finne-soveri, Adjunct Professor in Geriatric Medicine, Chief of Aging and Services Unit, National Institute for Health and Welfare, Helsinki, Finland. dinnus h. m. frijters, Institute for Health and Care Research, Department of Nursing Home Medicine, VU University Medical Center, Amsterdam, The Netherlands. vjenka garms-homolová, Professor for Healthcare Management, Alice Salomon University of Applied Sciences, Berlin, Germany. joan gil, Associate Professor, Department of Economic Theory and Centre for Economic Analysis and Social Policy (CAEPS), University of Barcelona, Spain. ruedi gilgen was a leading gerontologist in Switzerland. He passed away during the writing of this book. His chapter co-authors and the editors are extremely appreciative of his contribution to this volume and for sharing his substantial knowledge and expertise. len c. gray, Professor and Director, Centre for Research in Geriatric Medicine and Director, Centre for Online Health, The Masonic Chair in Geriatric Medicine, The University of Queensland, Australia. daniel grob, Medical Director, Waid Hospital, Zurich, Switzerland. xinping guan, Professor and Chair, Department of Social Work and Social Policy, Nankai University, Tianjin, China. jan p. h. hamers, Professor in the Care of Older People, School for Public Health and Primary Care (CAPHRI), Department of Health Services Research, Maastricht University, The Netherlands. teija hammar, Senior Researcher, Aging and Services Unit, National Institute for Health and Welfare, Helsinki, Finland. john p. hirdes, Professor, School of Public Health and Health Systems, University of Waterloo, Ontario, Canada. jacquetta holder, Research Fellow, Personal Social Services Research Unit, University of Kent at Canterbury, United Kingdom. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information xiv List of contributors naoki ikegami, Professor and Chair, Department of Health Policy and Management, Keio University School of Medicine, Japan. tomoaki ishibashi, Director of Research, Dia Foundation for Research on Ageing Societies, Tokyo, Japan. soong-nang jang, Professor, Department of Nursing, Chung-Ang University, Seoul, South Korea. hye-young jung, Professor, Department of Public Health, Weill Cornell Medical College of Cornell University, USA. vahe kehyayan, Adjunct Assistant Professor, School of Public Health and Health Systems, University of Waterloo, Ontario, Canada. ruud g. i. j. m. kempen, Professor of Social Gerontology, School for Public Health and Primary Care (CAPHRI), Department of Health Services Research, Maastricht University, The Netherlands. soonman kwon, Professor of Health Economics and Policy, School of Public Health, Seoul National University, South Korea. frédérique lamontagne-godwin, Researcher, European Centre for Social Welfare Policy and Research, Vienna, Austria (2008–2011). kai leichsenring, Associate Senior Researcher, European Centre for Social Welfare Policy and Research, Vienna, Austria. tiziana leone, Senior Research Fellow in Health Policy at LSE Health and Lecturer in Demography in the Department of Social Policy, The London School of Economics and Political Science, United Kingdom. chang liu, Assistant Professor, Program in Health Services and Systems Research, Duke–NUS Graduate Medical School, Singapore. harold b. lomas, Australian Department of Industry, Innovation, Science, Research and Tertiary Education (formerly Director, Aged Care Reform Taskforce, Australian Department of Health and Ageing), Canberra. juliette malley, Research Fellow, Personal Social Services Research Unit, The London School of Economics and Political Science, United Kingdom. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information List of contributors xv anna maresso, Research Officer, LSE Health, The London School of Economics and Political Science and European Observatory on Health Systems and Policies, United Kingdom. brigette meehan, interRAI Programme Manager, New Zealand Ministry of Health, New Zealand. nigel millar, Chief Medical Officer, Canterbury District Health Board, New Zealand. vincent mor, Florence Pirce Grant Professor of Community Health, Department of Health Policy and Practice, Brown University School of Public Health, and Senior Health Scientist at the Providence Veterans Administration Medical Centre (Health Services Research Service), USA. thomas münzer, Chief of Geriatrics and Long Term Care, Geriatrische Klinik St Gallen Kompetenzzentrum Gesundheit und Alter St Gallen, and Lecturer in Geriatrics, University of Bern Medical Faculty, Bern, Switzerland. anja noro, Research Director, Aging and Services Unit, National Institute for Health and Welfare, Helsinki, Finland. ricardo rodrigues, Research Fellow, European Centre for Social Welfare Policy and Research, Vienna, Austria. gloria rubert, Associate Professor, Department of Economic Theory and Centre for Economic Analysis and Social Policy (CAEPS), University of Barcelona, Spain. georg ruppe, since 2011 CEO and Researcher at the Austrian Interdisciplinary Platform on Ageing/ÖPIA, Vienna, Austria. Previously, Researcher, European Centre for Social Welfare Policy and Research, Vienna, Austria. josé m. sanjuan, Ph.D. candidate and Researcher at the University of Barcelona, Spain. andrea schmidt, Researcher, European Centre for Social Welfare Policy and Research, Vienna, Austria. jos m. g. a. schols, Professor of Old Age Medicine, School for Public Health and Primary Care (CAPHRI), Department of General © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information xvi List of contributors Practice and Department of Health Services Research, Maastricht University, The Netherlands. jae eun seok, Professor, Department of Social Welfare, Hallym University, South Korea. meritxell solé, Ph.D. candidate and Researcher at the University of Barcelona and CREB, Spain. david stevenson, Associate Professor, Department of Health Policy, Vanderbilt University School of Medicine, Nashville, USA. päivi voutilainen, Dr Sc. (Healthcare), Ministerial Counsellor, Social Affairs, Ministry of Social Affairs and Health, Finland. heying jenny zhan, Associate Professor, Department of Sociology, Georgia State University, USA. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Foreword A key but neglected issue in long-term care is how different countries ensure that nursing homes, home care agencies and residential care facilities provide good-quality care. Although countries employ a number of strategies to accomplish this goal, the most common approach is regulation – to establish mandatory, government or government agent-imposed quality standards (Wiener et al., 2007a, 2007b). In most cases, these government regulations or other standards set the minimum quality that providers must meet to operate or to receive government funding. The role of government regulation in long-term care varies widely across countries, within countries and across services. In most countries, long-term care is heavily financed by the public sector (European Commission, 2012; OECD, 2005). Thus, governments have a fiduciary responsibility to ensure that the public’s money is well spent. This book fills an important gap by analysing how a large number of countries around the world regulate the quality of long-term care services and the extent to which they make the results of their inspections and other information on quality available to the public. Although some countries, such as the United States, have wellestablished regulatory systems, others, such as China, do not. But having a well-established regulatory system does not guarantee that all providers establish high quality. For example, in the United States, 23 per cent of nursing homes in 2010 were cited for causing actual harm or placing residents in jeopardy (Harrington et al., 2011). Moreover, during that same year, the US Administration on Aging received 157,962 complaints from nursing home residents or their families about poor quality of care, problematic quality of life and violations of resident rights (US Administration on Aging, 2011). Additionally, almost nothing is known about the quality of residential care facilities xvii © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information xviii Foreword because these providers are regulated at the state level using highly variable standards and the provision of personal care by home care agencies and individual providers is hardly regulated. The regulatory process has three components: (1) rules that establish the standards or norms that providers must meet; (2) inspections or other means of collecting data to assess whether the providers are meeting the rules or performance norms; and (3) enforcement or other remedies to address problems identified during the inspection or other discovery process. How countries implement these three activities varies widely. Reflecting the historical emphasis on institutional care, such as nursing homes, regulation of institutions is more common than regulation of home- and community-based services. Although ensuring quality of long-term care has always been important, its salience will grow rapidly in the coming years because many more people will receive long-term care services and because government expenditures to pay for those services will increase substantially (European Commission, 2012; Johnson et al., 2007; OECD, 2006). Throughout the world, the population is aging. People aged 80 and older, who are most likely to be disabled and need long-term care services, are among the fastest-growing segments of the population. For example, for the twenty-seven countries in the European Union, the population aged 80 and older is projected to increase 2.6-fold as a proportion of the total population, from 4.7 per cent of the population in 2010 to 12.1 per cent of the population in 2060 (European Commission, 2012). The ageing of the population in the developed countries is well known; much less appreciated is that the population in middle-income countries is also ageing rapidly. Indeed, the proportion of the population aged 85 and older in Brazil, China, India, Mexico, and Russia will more than quadruple between 2010 and 2050, bringing them to at least the 2010 level of the United States or higher (US Census Bureau, 2009). The critical role of government regulation in long-term care is related to the types of services provided and the people who use those services. Regulation is used cautiously in most free-market-oriented economies, yet quality assurance for long-term care is an area dominated by regulation. The rationale for the prominent role of regulation in free-market economies is market failure such that consumers cannot effectively use their market power to improve quality. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Foreword xix First, many people using long-term care services are severely ill and disabled, and some of these individuals may not have the ability to complain about the care they are receiving or to ‘vote with their feet’ and use another provider. Moreover, many people who require longterm care services have cognitive impairments that make it difficult for them to make decisions. For example, in the United States, 41 per cent of nursing home residents in 2009 had moderate to severe cognitive impairment and 68 per cent of nursing home residents had some level of cognitive impairment (US Centers for Medicare and Medicaid Services, 2010). Finally, some people using long-term care services have no close family or friends to act on their behalf for their care and protection, if needed. Second, nursing homes and other residential settings, in particular, are ‘total institutions’, where individuals live twenty-four hours a day and where many aspects of life are controlled by others (Goffman, 1961). Fear of physical abuse and other retribution from staff may prevent residents from complaining, and difficulty finding other placements may prevent them from leaving. Even for home care, people with severe disabilities may suffer adverse consequences if they are left with a gap in service caused by ‘firing’ their personal care worker (LaPlante et al., 2004). Third, although a great deal of long-term care is non-technical help with activities of daily living or instrumental activities of daily living, many providers serve individuals with substantial healthcare needs that require medical skills that laypersons are unlikely to be able to evaluate (Walsh et al., 2012). Fourth, high occupancy rates in nursing homes and a shortage of home and community-based services providers in many countries may mean that providers are able to operate at near capacity without having to compete based on quality of care. This may be especially true of providers serving beneficiaries of programmes designed for the poor, which often have lower reimbursement rates. In these situations, consumers cannot choose another, higher-quality provider because there are none available. Finally, decisions about the appropriate type of care and which provider to use are often made more difficult by the need to make decisions quickly while under substantial stress. Thus, placement in nursing homes is often done during a rushed period when hospitals are seeking to discharge patients so that they can free up beds, making the choice of long-term care services less deliberative and careful. In © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information xx Foreword addition, because relatives often want services provided at a geographic location close to them, the choice of facilities or other services may actually be quite limited, again lessening the amount of effective competition. Issues in the design of a long-term care regulatory system In designing regulatory systems for long-term care, countries must address a number of important issues, including defining what is meant by quality, deciding which providers will be subject to the regulation, establishing quality standards, providing incentives for providers to do more than meet minimum standards, obtaining timely information about the quality of care provided, enforcing regulations in a way that obtains compliance and deciding what information about regulatory performance should be made available to the public. Given the characteristics of long-term care, the domains of quality are often divided into quality of care and quality of life. Although related, these domains are analytically separate and address separate parts of the care experience. In terms of quality of care, a major focus of longterm care regulation in the United States is on health and safety, including potential markers of poor quality such as dehydration, urinary tract infections, malnutrition, bedsores, excessive use of hypnotics and antipsychotic medications, undertreatment of depression, weight loss and uncontrolled pain. For example, quality of care assessments include whether nursing homes carefully help residents with eating, whether there is adequate staffing to assist residents at mealtime and whether residents maintain an appropriate weight. The vast majority of existing regulations and quality measures focus on quality of care. In contrast, quality of life refers to much more intangible factors, such as autonomy, dignity, individuality, comfort, meaningful activity and relationships, a sense of security, and spiritual well-being (National Citizens’ Coalition for Nursing Home Reform, 1985; Noelker and Harel, 2000). These factors are, by definition, subjective, but they are critical to living a good and meaningful life. For example, quality of life refers to the tastiness of the food, the ability to choose meals that fit with personal preferences and ethnic heritage, the friendliness and patience of the staff helping with feeding and the willingness of the staff to let residents feed themselves to the extent possible, even if it takes additional time. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Foreword xxi An important hypothesis articulated by some advocates of assisted living and consumer-directed services is that there may be a trade-off between quality of care and quality of life (Kane, 2001, 2003). Kane (2001) argues that for most people a meaningful quality of life is more important than health and safety. Thus, for example, an individual with diabetes at the end of life may want to eat candy because it tastes good, even though doing so is medically undesirable. The negotiated risk agreements in some assisted living facilities in the United States, where informed consumers or their agents explicitly accept risks and the possibility of adverse outcomes to achieve quality of life goals, are an effort to address these trade-offs (Jenkens et al., 2006). Almost all countries devote far greater resources to monitoring nursing homes and other institutional providers than they allocate to home care and other community services. Reflecting funding limitations and the greater vulnerability of people in institutions, it also reflects the greater difficulty of regulating quality in home- and community-based services: the range of services is great with a great multiplicity of types of providers; users are, by definition, highly geographically dispersed, making data collection difficult and expensive; and there is less consensus on what the standards should be. In the United States, this lack of consensus is exacerbated by a belief by some policy analysts that nursing home standards are rigid and interfere with quality of life; thus, there is a strong policy desire not to replicate those standards in the home- and community-based setting (Kane, 2001). A key task is establishing the quality standards that providers must meet. In the United States, federal and state regulations emphasize inputs, manuals, paperwork and structural capacity rather than resident outcomes. Critics contend that regulations are usually not evidence-based and do not measure what is important. These observers blame much of the poor quality of life in nursing facilities on rigid regulations, which force a ‘medical model’ on nursing homes. A major element of the political economy of regulation is that many proposals for improving the quality of long-term care – for example, requiring higher staffing levels – require substantially more financial resources than governments are willing to spend. Thus, providers contend that it is unfair for governments to insist on high-quality care when they are unwilling to pay for the staffing and other inputs necessary to make it happen. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information xxii Foreword Most regulations establish the minimum that providers must do; in other words, they set a floor on provider activity. Opponents of stricter regulation also argue that detailed rules stifle innovation, with few incentives for doing more than the minimum. The dilemma is how to give good-quality facilities more flexibility while still requiring substandard facilities to meet adequate standards. Setting standards is important, but standards are meaningless unless regulators are able to monitor how providers are performing against them. In many countries, regulators often do not have adequate resources to even visit all providers on a regular basis. The United States, for example, had 15,678 nursing facilities in 2012 (American Health Care Association, 2013), 31,100 residential care facilities in 2010 (Park et al., 2011), 10,581 home health agencies in 2009 (National Association for Home Care, 2010), and an unknown but large number of non-skilled home care agencies and consumer-hired individual personal care providers, making just visiting providers a daunting task. Infrequent visits mean that providers may perform when visited by regulators, but provide substandard care when government inspectors are not around. Limited funding for inspections in many countries means that providers are visited infrequently, raising questions of how effective the monitoring oversight can be. The infrequency of the inspections has led consumer advocates to argue for more resources and to search for strategies that do not depend on the constant presence of inspectors. Different countries have adopted varying strategies to enforce regulations. However, without enforcement, the standards are meaningless. For some countries, such as the United States and England, enforcing regulations is a classic policing function in which providers who do not meet the regulatory requirements are identified and punished. In other countries, the relationship between providers and inspectors is more collaborative and the role of inspectors is more to work with providers to resolve problems. Advocates of strong government regulation argue that enforcement remains too weak and that stronger regulation would greatly improve quality of care. Although regulatory sanctions are meant to punish the owners or administrators of poor-quality nursing facilities, it is hard to avoid ‘punishing’ the residents at the same time. For example, closing a facility may require the relocation of a large number of residents, which is hard to achieve because of relatively high nursing home occupancy rates in most countries, and which will cause disruption to residents’ lives and © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information Foreword xxiii social relations. Likewise, ‘intermediate sanctions’, such as freezing new admissions or imposing civil fines, may result in reduced cash payments to facilities that may need to be spending more money on staff and other services. This inability to separate nursing homes from their residents is a major constraint on the willingness of regulators to impose tough sanctions on poor-quality facilities. One increasingly prominent approach to improving quality of care is to provide more information to consumers, their families, providers, hospital discharge planners and others about the quality of individual long-term care providers (US Centers for Medicare and Medicaid Services, 2012). The underlying premise is that the lack of information on quality results in a market failure. The basic assumption of this approach is that, armed with more information about quality of care, consumers will choose high-quality providers and avoid poor-quality providers. Thus, in theory, market competition for residents and clients would force poor-performing providers to improve their quality of care or go out of business. Hospital discharge planners, case managers and others involved in the placement process could also use the information to advise individuals needing services and their families. Providers could also use the information to identify areas for improvement. Many countries are now exploring this strategy, although providers generally resist releasing information to the public about the performance of individual providers. Although there is widespread support for providing more information to consumers, the research literature on the consumer response to quality of care information for long-term care finds only modest positive effects (US Centers for Medicare and Medicaid Services, 2012). Conclusion For people who use long-term care services, the quality of the care they receive is critically important, and in some cases can be the difference between life and death. Too often, quality of care is like what we ourselves would want to receive if we needed care. Government regulation is one strategy to try to ensure that all providers supply at least a minimally adequate level of care. Throughout the world, these strategies are evolving, and in many countries expanding to home- and community-bases services that were never before regulated. This book provides an invaluable examination of how fourteen countries regulate © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-04206-3 - Regulating Long-Term Care Quality: An International Comparison Edited by Vincent Mor, Tiziana Leone and Anna Maresso Frontmatter More information xxiv Foreword the quality of long-term care services. The hope of cross-national analyses is that countries will learn from each other and improve services to people with functional and cognitive impairments who need long-term care services. Joshua M. 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