Advance Directives

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.

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 first time I read the medical consent and authorization. it had registered in my mind simply as a legal document. Now I began to understand what it meant. It was a letter of ultimate love and trust. (Schucking. 1985. p. 268) Ever since Karen Ann Quinlan slipped into permanent unconsciousness in 1975 and her father agonized publicly over whether she should remain indefinitely on a respirator (In re Quinlan, 1976), the desires of patients, their families, and their friends to limit the application of apparently limitless medical technology have been a pressing concern for ethics, law, and public policy. Ms. Quinlan's case contained nearly all the elements of the problems we still face: vague, general, but sincere prior oral statements suggesting that she would not want continued treatment; a family attempting to do what they saw as best for her; and physicians uncertain whether to use medical judgment alone (and if so, what the "right" medical decision was), to preserve her life at all costs, or to honor the family's interpretation of their daughter's choice. Most ironically, once she was removed from her respirator, she did not die. Karen Quinlan - like dozens of other names made famous by court decisions, newspaper stories, and television evening news - has come to symbolize a tangled knot of issues surrounding the end of life and who controls it.

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 Care Planning (ACP) is an essential part of end of life care in the UK and most developed countries. It enables more people to live well and die as they would choose, and has significant implications for the individual person, their family and carers, and our wider society. In the context of an ageing population and increasing possibilities for medical interventions, ACP is a particularly important aspect of quality care. Expanded and fully updated throughout, this new edition gives a comprehensive overview of ACP and explores a wide range of issues and practicalities in providing end of life care. Written by experts from around the world, the book takes a comprehensive look at the subject by exploring the wide range of issues and practicalities in providing ACP; framing the purpose, process, and outcomes of these plans; and providing an important update on national and international research, policy and practice. Chapters also discuss values, goals and priorities, and include detailed case examples to aid best practice. This book is an invaluable resource for all clinicians involved in the caring for people in their final stages of life. It is of particular value to GPs, palliative care specialists, geriatricians, social care teams, researchers and policy leads interested in improving end of life care.

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.