Aging Medicine Series Editors: Robert J. Pignolo · Mary A. Forciea · Jerry C. Johnson Amy S. Kelley Diane E. Meier Editors Meeting the Needs of Older Adults with Serious Illness Challenges and Opportunities in the Age of Health Care Reform Aging Medicine Robert J. Pignolo, MD, PhD; Mary A. Forciea, MD; Jerry C. Johnson, MD, Series Editors For further volumes: http://www.springer.com/series/7622 Amy S. Kelley • Diane E. Meier Editors Meeting the Needs of Older Adults with Serious Illness Challenges and Opportunities in the Age of Health Care Reform Editors Amy S. Kelley, M.D., M.S.H.S. Diane E. Meier, M.D. Brookdale Department of Geriatrics Brookdale Department of Geriatrics and Palliative Medicine and Palliative Medicine Icahn School of Medicine at Mount Sinai Icahn School of Medicine at Mount Sinai New York , NY , USA New York , NY , USA ISBN 978-1-4939-0406-8 ISBN 978-1-4939-0407-5 (eBook) DOI 10.1007/978-1-4939-0407-5 Springer New York Heidelberg Dordrecht London Library of Congress Control Number: 2014945371 © Springer Science+Business Media New York 2014 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifi cally the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfi lms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. 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While the advice and information in this book are believed to be true and accurate at the date of publication, neither the authors nor the editors nor the publisher can accept any legal responsibility for any errors or omissions that may be made. The publisher makes no warranty, express or implied, with respect to the material contained herein. Printed on acid-free paper Humana Press is a brand of Springer Springer is part of Springer Science+Business Media (www.springer.com) Pref ace Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis or stage of illness. The goal is to improve quality of life for both the patient and the family. Countless studies have shown that patients with serious and life-threatening illness experience untreated pain and other symp- toms; lengthy hospitalizations involving unwanted, often futile, burdensome, and costly medical treatments; and low overall family satisfaction—particularly with the quality of hospital care [1–11]. Encouragingly, a growing body of research supports the evidence for palliative care’s positive impact on important clinical outcomes. These include relieved pain and distressing symptoms, improved quality of life for patients and families com- pared to controls, reduced anxiety and depression, support of ongoing discussion of goals of care and diffi cult decision-making, spiritual well-being, eased burden on caregivers and improved satisfaction, improvement in patients’ ability to complete life-prolonging treatments, improved communication and transition management, and better survival in studies of some cancer and hospice populations. As a conse- quence of better quality of care—for example, fewer pain and symptom crises leading to 911 calls, emergency department visits, and hospitalizations—palliative care models have been shown in multiple studies to reduce hospital readmissions and costs and to decrease costs in community settings [12–25]. This evidence highlights the ability to enhance healthcare value by improving quality and, by actually meeting patient and family needs, containing costs. For example, a pivotal study by Morrison et al. (2008) found that palliative care pro- grams improve physical and psychological symptoms as well as caregiver out- comes of well-being and family satisfaction [26]. This study also demonstrated net savings of $1,696 in direct hospital costs per admission. A similar study found that patients enrolled in Medicaid who received palliative care incurred $6,900 less in hospital costs than a matched group receiving usual care. The patients receiving palliative care spent less time in the hospital; were less likely to die in intensive care units; and more likely to receive hospice referrals [27]. Likewise, a study of the Advanced Illness and Management (AIM) program launched by Sutter Health v vi Preface in Northern California found that, through integrated home-based and transitional palliative care, patients’ needs were met at home, resulting in fewer hospitaliza- tions and lower costs (average savings per patient was approximately $2,000 per month) [28]. The past two decades have witnessed a dramatic period of growth in palliative care services, particularly in hospitals. Over 85 % of large hospitals now offer pal- liative care services. Yet, fewer than half of public, for-profi t, and small community hospitals report presence of a palliative care team. Even in the hospitals where such services exist, only a fraction of those patients and families who could benefi t actu- ally receive palliative care. These teams are variably supported by hospital opera- tions dollars, fee for service provider reimbursement, and philanthropy. As a result of inadequate and unreliable resources and the fact that palliative care services are not mandated through regulatory or accreditation processes, most programs are too understaffed to reach all the patients in need. Therefore, public policy is needed to standardize high quality and to assure access for all Americans with serious illness who can benefi t from care informed by palliative care principles and practices. Importantly, access to palliative care must be scaled beyond hospitals to community settings where patients and their families live and need help. It is precisely the absence of needed palliative and social supports in the community that forces people to turn to 911 calls, ambulances, and emergency rooms. The USA is currently facing a crisis in health care marked by unsustainable spending and quality that is poor relative to international benchmarks. A recent report to the Institute of Medicine on the costs of care for the seriously ill revealed that 5 % of the US population account for half of the nation’s healthcare spending and only a minority of them, 11 %, are in the last year of life [29]. The ongoing healthcare reform debate centers on how to best care for this seriously ill popula- tion, in a manner that supports high quality, person- and family-centered care, so as to improve quality enough to reduce the need for costly crisis care in hospitals. Palliative care must be a key component to those discussions. Meeting the Needs of Older Adults with Serious Illness : Challenges and Opportunities in the Age of Health care Reform is a platform upon which to build that discussion. In the following chapters, expert researchers and academic leaders have partnered with policy experts and thought leaders to tackle 16 key areas where pallia- tive care could have a substantial role in reform and improvement, and real- world policy options to accomplish these goals. Together these partners highlight the current evidence, outline specifi c policy recommendations to translate this evidence into practice, and discuss the practical action steps by which these policy changes could be enacted. The fi rst section of the text, Current Needs of Older Adults with Serious Illness , describes the harms of unnecessary testing and treatment, using the Choosing Wisely campaign as a case study of an actionable solution [30]; reveals racial, socioeco- nomic, and regional disparities in access to palliative care services; and delves into the challenges and implications of caregiving among families of the seriously ill. The second segment, Settings for the Care of the Seriously Ill , examines the wide arrays of settings for the care of the seriously ill, including community and home-based services, hospice programs and various sites of delivery of hospice Preface vii services, and long- term care facilities. Next, Measuring Quality and Paying for the Care of the Seriously Ill begins with a discussion of current efforts to measure the quality of care for the seriously ill, including the limitations of such measures and actionable areas for their improvement. This section also addresses the evidence for palliative care’s impact on costs; explores government programs for the seriously ill, including many people dually eligible for Medicare and Medicaid coverage;