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Market forces are driving a radical restructuring of health care delivery in the United States. At the same time, more and more people are living comparatively long lives with a variety of severe chronic health conditions. Many such people are concerned about the trend toward the creation of managed care systems because their need for frequent, often complex, medical services conflicts with managed care's desires to contain costs. The fear is that people with serious chronic disorders will be excluded from or underserved by the integrated health care delivery networks now emerging. Responding to a request from the National Institute of Arthritis and Musculoskeletal and Skin Diseases, this book reflects the results of a workshop that focused on the following questions: Does the model of managed care or an integrated delivery system influence the types of interventions provided to patients with chronic conditions and the clinical and health status outcomes resulting from those interventions? If so, are these effects quantitatively and clinically significant, as compared to the effects that other variables (e.g., income, education, ethnicity) have on patient outcomes? If the type of health care delivery system appears to be related to patient care and outcomes, can specific organizational, financial, or other variables be identified that account for the relationships? If not, what type of research should be pursued to provide the information needed about the relationship between types of health care systems and the processes and outcomes of care provided to people with serious chronic conditions?
In the United States, chronic diseases currently account for 70 percent of all deaths, and close to 48 million Americans report a disability related to a chronic condition. Today, about one in four Americans have multiple diseases and the prevalence and burden of chronic disease in the elderly and racial/ethnic minorities are notably disproportionate. Chronic disease has now emerged as a major public health problem and it threatens not only population health, but our social and economic welfare. Living Well with Chronic Disease identifies the population-based public health actions that can help reduce disability and improve functioning and quality of life among individuals who are at risk of developing a chronic disease and those with one or more diseases. The book recommends that all major federally funded programmatic and research initiatives in health include an evaluation on health-related quality of life and functional status. Also, the book recommends increasing support for implementation research on how to disseminate effective longterm lifestyle interventions in community-based settings that improve living well with chronic disease. Living Well with Chronic Disease uses three frameworks and considers diseases such as heart disease and stroke, diabetes, depression, and respiratory problems. The book's recommendations will inform policy makers concerned with health reform in public- and private-sectors and also managers of communitybased and public-health intervention programs, private and public research funders, and patients living with one or more chronic conditions.
This publication explores some of the key issues, ranging from interpreting the evidence base to assessing the policy context for, and approaches to, chronic disease management across Europe. Drawing on 12 detailed country reports (available in a second, online volume), the study provides insights into the range of care models and the people involved in delivering these; payment mechanisms and service user access; and challenges faced by countries in the implementation and evaluation of these novel approaches.
Twenty-seven-year-old Laurie Edwards is one of 125 million Americans who have a chronic illness, in her case a rare genetic respiratory disease. Because of medical advances in the treatment of serious childhood diseases, 600,000 chronically ill teens enter adulthood every year who decades ago would not have survived-they and people diagnosed in adulthood face the same challenges of college, career, and starting a family as others in their twenties and thirties, but with the added circumstance of having chronic illness. Life Disrupted is a personal and unflinching guide to living well with a chronic illness: managing your own health care without letting it take over your life, dealing with difficult doctors and frequent hospitalizations, having a productive and satisfying career that accommodates your health needs, and nurturing friendships and a loving, committed relationship regardless of recurring health problems. Laurie Edwards also addresses the particular needs of people who have more than one chronic illness or who are among the twenty-five million Americans with a rare disorder. She shares her own story and the experiences of others with chronic illness, as well as advice from life coaches, employment specialists, and health professionals. Reading Life Disrupted is like having a best friend and mentor who truly does know what you're going through.
Chronic Disease in the Twentieth Century challenges the conventional wisdom that the concept of chronic disease emerged because medicine's ability to cure infectious disease led to changing patterns of disease. Instead, it suggests, the concept was constructed and has evolved to serve a variety of political and social purposes. How and why the concept developed differently in the United States, an United Kingdom, and France are central concerns of this work. While an international consensus now exists, the different paths taken by these three countries continue to exert profound influence. This book seeks to explain why, among the innumerable problems faced by societies, some problems in some places become viewed as critical public issues that shape health policy. -- from back cover.
This book provides an account of the ethics of chronic illness. Chronic illness differs from other illnesses in that it is often incurable, patients can live with it for many years, and its day-to-day management is typically carried out by the patient or members of their family. These features problematise key distinctions that underlie much existing work in medical ethics including those between beneficence and autonomy, between treatment and prevention, and between the recipient and provider of treatment. The author carries out a detailed reappraisal of the roles of both autonomy and beneficence across the different stages of treatment for a range of chronic illnesses. A central part of the author’s argument is that in the treatment of chronic illness, the patient and/or the patient’s family should be seen as acting with healthcare professionals to achieve a common aim. This aspect opens up unexplored questions such as what healthcare professionals should do when patients are managing their illness poorly, the ethical implications of patients being responsible for parts of their treatment, and how to navigate sharing information with those directly involved in patient care without violating privacy or breaching confidentiality. The author addresses these challenges by engaging with philosophical work on shared commitments and joint action, responsibility and justice, and privacy and confidentiality. The Ethics of Chronic Illness provides a new, and much needed, critical reappraisal of healthcare professionals’ obligations to their patients. It will be of interests to academics working in bioethics and medical ethics, philosophers interested in the topics of autonomy, responsibility, and consent, and medical practitioners who treat patients with chronic illness.
This life-affirming, instructive, and thoroughly inspiring book is a must-read for anyone who is - or who might one day be - sick. It can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or life-threatening illness. Authentic and graceful, How to be Sick reminds us of our limitless inner freedom, even under high degrees of suffering and pain. The author - who became ill while a university law professor in the prime of her career - tells the reader how she got sick and, to her and her partner's bewilderment, stayed that way. Toni had been a longtime meditator, going on long meditation retreats and spending many hours rigorously practicing, but soon discovered that she simply could no longer engage in those difficult and taxing forms. She had to learn ways to make "being sick" the heart of her spiritual practice - and through truly learning how to be sick, she learned how, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. And whether we ourselves are ill or not, we can learn these vital arts from Bernhard's generous wisdom in How to Be Sick.
Second in a series of publications from the Institute of Medicine's Quality of Health Care in America project Today's health care providers have more research findings and more technology available to them than ever before. Yet recent reports have raised serious doubts about the quality of health care in America. Crossing the Quality Chasm makes an urgent call for fundamental change to close the quality gap. This book recommends a sweeping redesign of the American health care system and provides overarching principles for specific direction for policymakers, health care leaders, clinicians, regulators, purchasers, and others. In this comprehensive volume the committee offers: A set of performance expectations for the 21st century health care system. A set of 10 new rules to guide patient-clinician relationships. A suggested organizing framework to better align the incentives inherent in payment and accountability with improvements in quality. Key steps to promote evidence-based practice and strengthen clinical information systems. Analyzing health care organizations as complex systems, Crossing the Quality Chasm also documents the causes of the quality gap, identifies current practices that impede quality care, and explores how systems approaches can be used to implement change.
Written by both medical and religious professionals, as well as those who study exclusively the interaction between the two worlds, this text deals with the spiritual and religious care of the chronically ill and dying. Case studies are included throughout.