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.

This volume deals with the difficult and sensitive issues faced by lawyers, doctors, nurses, clerics, and spiritual advisors in helping clients and patients plan, write, execute, and implement personal contingency plans for health-care decision-making.

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.

My Voice, My Choice offers individuals and families an approachable and meaningful process for exploring and communicating end-of-life health and personal care preferences. This practical guidebook: - Explains why healthcare directives are important to individuals and their loved ones. - Describes what should be included in thorough and legal healthcare directives. - Offers tools and a process to ensure the resulting directive is complete, executed, accessible when needed, and appropriately communicated.

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.