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This book is the most comprehensive treatment available of one of the most urgent problems in bioethics: decision-making for incompetents.
This book is designed to present an overview of common geriatrics ethical issues that arise during patient care and research activities. Each chapter includes a case example and practical learning pearls that are useful in day-to-day patient care. Coverage includes a brief overview of geriatric epidemiology, highlighting the high rates of dementia, use of surrogate decisions makers at the end-of-life, relocation from home to long-term care facilities, and low health literacy in the geriatrics population. Sections are devoted to issues around capacity, surrogate decision making, end-of-life care, hemodialysis in the elderly, and futility as well as challenges presented by independence questions, such as dementia care, driving, feeding, and intimacy in nursing homes. The text also addresses questions around recognizing, reporting, and treating elder abuse and self-neglect, ethics related to research and technology in the geriatric population, and the use of e-mail, Facebook, and open notes. Written by experts in the field, Ethical Considerations and Challenges in Geriatrics is a valuable tool for trainees at a variety of levels including medical students, residents, and fellows. In addition, it provides practical guidance and a useful reference for practicing geriatricians, primary care physicians, geriatric nurses, social workers, nursing home workers, hospice care employees, and all medical health professionals working with the elderly.
The relationship between law and bioethics and the influence of both on medical research and clinical practice is a topic that is often mentioned but rarely subjected to sustained critical analysis. This book considers a number of issues in medicine in which the influence of the law has been most profound and positive including: informed consent; advance directives; constitutional liberties and privacy; standards for pain management and end-of-life care. The book provides important background material on significant legal and philosophical concepts, terms and principle necessary to an understanding of the legal process and ethical analysis. This work establishes the role of law in medicine and bioethics as being positive and its continuing involvement in the rights of research subjects and patients as a necessity.
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.
Seven in ten Americans over the age of age of sixty who require medical decisions in the final days of their life lack the capacity to make them. For many of us, our biggest, life-and-death decisions—literally—will therefore be made by someone else. They will decide whether we live or die; between long life and quality of life; whether we receive heroic interventions in our final hours; and whether we die in a hospital or at home. They will determine whether our wishes are honored and choose between fidelity to our interests and what is best for themselves or others. Yet despite their critical role, we know remarkably little about how our loved ones decide for us. Speaking for the Dying tells their story, drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital. From bedsides, hallways, and conference rooms, you will hear, in their own words, how physicians really talk to families and how they respond. You will see how decision makers are selected, the interventions they weigh in on, the information they seek and evaluate, the values and memories they draw on, the criteria they weigh, the outcomes they choose, the conflicts they become embroiled in, and the challenges they face. Observations also provide insight into why some decision makers authorize one aggressive intervention after the next while others do not—even on behalf of patients with similar problems and prospects. And they expose the limited role of advance directives in structuring the process decision makers follow or the outcomes that result. Research has consistently found that choosing life or death for another is one of the most difficult decisions anyone can face, sometimes haunting families for decades. This book shines a bright light on a role few of us will escape and offers steps that patients and loved ones, health care providers, lawyers, and policymakers could undertake before it is too late.
Patients today are more empowered and knowledgeable than they have ever been. By law, they must be told about the risks and benefits of proposed treatments and give informed consent before treatment is initiated. Through the democratization of medical information, they have access to peer-reviewed medical journals. Social media allows patients to share stories with others and to learn about other people's experiences with various treatments. There are websites written by experts at leading medical schools to help patients understand diseases and treatments. They have the right to see their medical records. The net result of all changes is a shift in the power balance between doctors and patients. Ideally, as a result of these shifts, the patients' values and preferences should guide treatment decisions. However, this proliferation of information often leads to confusion rather than clarity. Publicly available information often includes seemingly contradictory conclusions and recommendations. Patients don't know which opinions to trust. So, although patients have more information than ever, and many want to make decisions for themselves, they need more guidance than ever to help them process an avalanche of information. This volume aims to help both medical professionals and their patients navigate the evolving healthcare landscape by analyzing the process of shared decision-making (SDM) in clinical medicine. The concept of SDM has emerged in the last two decades as a middle ground between, on the one hand, old-fashinioned physician paternalism of the "doctor-knows-best" variety and, on the other hand, unfettered patient autonomy by which patients are thought capable of individually and independently choosing their own medical interventions. Advocates of SDM imagine that decisions will be made best if they follow a complex discussion and negotiation between doctor and patient; such discussions should incorporate the doctor's medical and technical expertise as well as the patient's goals, values, and preferences. SDM takes different forms for different patients in different clinical circumstances. This volume gathers experts in SDM to share their insights about how it ought to be done. The authors include clinicians, social scientist, and philosophers, all of whom have thought about or cared for patients from a variety of backgrounds and in a variety of clinical circumstances. The papers explore the complexity of SDM and offer practical guidance, gained from years of experience, about how to employ SDM as effectively as possible.
Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening. Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care. This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life: Determining diagnosis and prognosis and communicating these to patient and family. Establishing clinical and personal goals. Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
Integrates research, theory, and practice in supported decision-making and describes implications for supports provision in the disability field.