This volume gives an overview on the currently debated ethical issues regarding advance directives from an international perspective. It focuses on a wider understanding of the known and widely accepted concept of patient self-determination for future situations. Although advance directives have been widely discussed since the 1980s, the ethical bases of advance directives still remain a matter of heated debates. The book aims to contribute to these controversial debates by integrating fundamental ethical issues on advance directives with practical matters of their implementation. Cultural, national and professional differences in how advance directives are understood by health care professions and by patients, as well as in laws and regulations, are pinpointed.
For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.
Advance directives—such as living wills and health care proxies—are documents intended to declare and preserve the health care choices of patients if they become unable to make their own decisions. This book provides a comprehensive overview of advance directives and clear, practical directions for writing and interpreting them. Nancy M.P. King provides a legal, philosophical, and historical analysis of the moral and legal force of advance directives. She explains the types and models of advance directives currently in use and offers guidelines for individuals seeking to write, read, and use directives to promote individuals' health care choices within the laws of their own states. King emphasizes that advance directives are not orders given by patients to their doctors; instead, they are documents that invite conversation between doctors and patients about health care decisions of great importance. The purpose of advance directives is to support patients' health care choices, and the book promotes a thoughtful use of advance directives that is best calculated to achieve that purpose, whatever form individual advance directives may take. This new edition has been updated to reflect the many changes in advance directive statutes since 1991, including expanded discussions of health care proxy statutes, the impact of the Patient Self-Determination Act and the Supreme Court's Cruzan decision. King also has extended her analysis of the implications for advance directives of managed care, resource allocation, resource scarcity, and the debate over futile treatment at the end of life. Making Sense of Advance Directives is a valuable handbook for patients, health care providers and administrators, patient counselors, lawyers, policymakers, and any individual interested in advance directives.
In the quarter century since the landmark Karen Ann Quinlan case, an ethical, legal, and societal consensus supporting patients' rights to refuse life-sustaining treatment has become a cornerstone of bioethics. Patients now legally can write advance directives to govern their treatment decisions at a time of future incapacity, yet in clinical practice their wishes often are ignored. Examining the tension between incompetent patients' prior wishes and their current best interests as well as other challenges to advance directives, Robert S. Olick offers a comprehensive argument for favoring advance instructions during the dying process. He clarifies widespread confusion about the moral and legal weight of advance directives, and he prescribes changes in law, policy, and practice that would not only ensure that directives count in the care of the dying but also would define narrow instances when directives should not be followed. Olick also presents and develops an original theory of prospective autonomy that recasts and strengthens patient and family control. While focusing largely on philosophical issues the book devotes substantial attention to legal and policy questions and includes case studies throughout. An important resource for medical ethicists, lawyers, physicians, nurses, health care professionals, and patients' rights advocates, it champions the practical, ethical, and humane duty of taking advance directives seriously where it matters most-at the bedside of dying patients.
The Patient Self-Determination Act of 1990 required medical facilities to provide patients with written notification of their right to refuse or consent to medical treatment. Using this Act as an important vehicle for improving the health care decisionmaking process, Lawrence P. Ulrich explains the social, legal, and ethical background to the Act by focusing on well-known cases such as those of Karen Quinlan and Nancy Cruzan, and he explores ways in which physicians and other caregivers can help patients face the complex issues in contemporary health care practices. According to Ulrich, health care facilities often address the letter of the law in a merely perfunctory way, even though the Act integrates all the major ethical issues in health care today. Ulrich argues that well-designed conversations between clinicians and patients or their surrogates will not only assist in preserving patient dignity — which is at the heart of the Act—but will also help institutions to manage the liability issues that the Act may have introduced. He particularly emphasizes developing effective advance directives. Ulrich examines related issues, such as the negative effect of managed care on patient self-determination, and concludes with a seldom-discussed issue: the importance of being a responsible patient. Showing how the Patient Self-Determination Act can be a linchpin of more meaningful and effective communication between patient and caregiver, this book provides concrete guidance to health care professionals, medical ethicists, and patient-rights advocates.
The recognition of positive rights and the growing impact of human rights principles has recently orchestrated a number of reforms in mental health law, bringing increasing entitlement to an array of health services. In this book, Penelope Weller considers the relationship between human rights and mental health law, and the changing attitudes which have led to the recognition of a right to demand treatment internationally. Weller discusses the ability of those with mental health problems to use advance directives to make a choice about what treatment they receive in the future, should they still be unable to decide for themselves. Focusing on new perspectives offered by the Conventions on the Rights of Persons with Disabilities (CRPD), Weller explores mental health law from a variety of international perspectives including: Canada, Australia, New Zealand and the United Kingdom, where policies differ depending on whether you are in England and Wales, or Scotland. These case studies indicate how human rights perspectives are shifting mental health law from a constricted focus upon treatment refusal, towards a recognition of positive rights. The book covers topics including: refusing treatment new approaches in human rights international perspectives in mental health law the right to demand treatment. The text will appeal to legal and mental health professionals as well as academics studying mental health law, and policy makers.
This volume gathers the contributions of leading researchers in the fields of bioethics, medical law and human rights. By providing an interdisciplinary reading of advance directives regulation against the background of European and International law, this book aims to offer new insights into the most controversial legal issues surrounding the theme of dignity and autonomy at the end of life. Cross-cultural perspectives from Europe, the Americas, Australia and China offer a comparative analysis of legal approaches to end-of-life decision-making and care, including the hotly debated issues of euthanasia and assisted suicide, also giving an account of recent developments in domestic legislation and jurisprudence. Special focus is placed on the Italian legal system and its ongoing discussion on advance directives regulation.
