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A Practical Handbook
There are few things requiring more expertise, delicacy, and compassion than caring for an infant, child, or young adult with a life-limiting condition. Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume. Thoroughly updated and expanded, this edition includes chapters addressing the unique challenges facing children with HIV / AIDS and their families, care in home and ICU settings, difficult decision-making processes, and the importance of communication with the child and family as well as completely new chapters on spiritual dimensions of care and educational and advocacy initiatives. Intended for primary care physicians, pediatric practitioners and specialists, home care and hospice personnel, pastoral counselors, and affected families, the book includes useful resource and reference material and practical, hands-on tips. With contributions from an international group of expert educators, clinicians, and parents, this book takes a truly interdisciplinary approach to pediatric palliative care, presenting best practices, clear instruction, and the latest information and research for anyone involved in pediatric palliative and end-of-life care. Praise for the first edition "An inspiring and accessible look at what end-of-life care for children should be—it is a text that should grace the shelf of every clinician facing the death of young patients."—Journal of the American Academy of Child and Adolescent Psychiatry "A great resource and learning tool . . . well written, well organized, very practical, and user friendly as a reference for all disciplines involved with palliative care."—American Academy of Pediatrics Newsletter "This book is rich with palliative care experts’ knowledge as well as humbling experiences of children and their families undergoing the latest stages of a life-threatening illness, the dying process, the death, and finally bereavement. Every chapter is written with a high degree of expertise and the authors’ compassion is ever present."—Journal of Palliative Medicine
Perspectives from Philosophy, Ethics, and Neuroscience
This book brings together some of the best minds in neurology and philosophy to discuss the concept of personal identity and the moral dimensions of treating brain disease and injury. The contributors engage a crucial question: When an individual’s personality changes radically because of disease or injury, should this changed individual be treated as the same person? Rapid advances in brain science are expanding knowledge of human memory, emotion, and cognition and pointing the way toward new approaches for the prevention and treatment of devastating illnesses and disabilities. Through case studies of Alzheimer disease, frontotemporal dementia, deep brain stimulation, and steroid psychosis, the contributors highlight relevant ethical and social concerns that clinicians, researchers, and ethicists are likely to encounter. Personal Identity and Fractured Selves represents the first formal collaboration between the Brain Sciences Institute and the Berman Institute of Bioethics, both at the Johns Hopkins University. The book asks neuroscientists and philosophers to address important questions on the topic of personal identity in an effort to engage both fields in fruitful conversation. Contributors: Samuel Barondes, M.D., University of California, San Francisco; David M. Blass, M.D., Johns Hopkins University School of Medicine; Patrick Duggan, A.B., Johns Hopkins Berman Institute of Bioethics; Ruth R. Faden, Ph.D., M.P.H., Johns Hopkins Berman Institute of Bioethics; Michael S. Gazzaniga, Ph.D., University of California, Santa Barbara; Guy M. McKhann, M.D., Johns Hopkins University School of Medicine; John Perry, Ph.D., Stanford University; Carol Rovane, Ph.D., Columbia University; Alan Regenberg, M.Be., Johns Hopkins Berman Institute of Bioethics; Marya Schechtman, Ph.D., University of Illinois at Chicago; Maura Tumulty, Ph.D., Colgate University
In this riveting and timely work, John P. Lizza presents the first comprehensive analysis of personhood and humanity in the context of defining death. Rejecting the common assumption that human or personal death is simply a biological phenomenon for biologists or physicians to define, Lizza argues that the definition of death is also a matter for metaphysical reflection, moral choice, and cultural acceptance. Lizza maintains that defining death remains problematic because basic ontological, ethical, and cultural issues have never been adequately addressed. Advances in life-sustaining technology and organ transplantation have led to revision of the legal definition of death. It is generally accepted that death occurs when all functions of the brain have ceased. However, legal and clinical cases involving postmortem pregnancy, individuals in permanent vegetative state, those with anencephaly, and those with severe dementia challenge the neurological criteria. Is "brain death" really death? Should the neurological criteria be expanded to include individuals in permanent vegetative state, with anencephaly, and those with severe dementia? What metaphysical, ethical, and cultural considerations are relevant to answering such questions? Although Lizza accepts a pluralistic approach to the legal definition of death, he proposes a nonreductive, substantive view in which persons are understood as "constituted by" human organisms. This view, he argues, provides the best account of human nature as biological, moral, and cultural and supports a consciousness-related formulation of death. Through an analysis of legal and clinical cases and a discussion of alternative concepts of personhood, Lizza casts greater light on the underlying themes of a complex debate.
Metaphysical and Bioethical Dimensions
What is the moral status of humans lacking the potential for consciousness? The concept of potentiality often tips the scales in life-and-death medical decisions. Some argue that all human embryos have the potential to develop characteristics—such as consciousness, intellect, and will—that we normally associate with personhood. Individuals with total brain failure or in a persistent vegetative state are thought to lack the potential for consciousness or any other mental function. Or do they? In Potentiality John Lizza gathers classic articles alongside newly commissioned chapters from leading thinkers who analyze the nature of potentiality in bioethics, a concept central to a number of important debates. The contributors illustrate how considerations of potentiality and potential persons complicate the analysis of the moral consideration of persons at the beginning and end of life. A number of works explicitly uncover the Aristotelian background of the concept, while others explore philosophical issues about persons, dispositions, and possibility. The common assumption that potentiality is intrinsic to whatever has the potentiality is challenged by a relational view of persons, an extrinsic account of dispositions, and attention to how extrinsic factors affect realistic possibilities. Although potentiality has figured prominently in bioethical literature, it has not received a great deal of logical, semantic, and metaphysical analysis in contemporary philosophical literature. This collection will bring these thorny philosophical issues to the fore. Incorporating cutting-edge research on the topic of potentiality, this thought-provoking collection will interest bioethicists, philosophers, health care professionals, attorneys engaged in medical and health issues, and hospital and governmental committees who advise on policy and law concerning issues at the beginning and end of life.
Women, Precancer, and Prophylactic Surgery
Modern scientific tools can identify a genetic predisposition to cancer before any disease is detectable. Some women will never develop breast or ovarian cancer, but they nevertheless must decide, as a result of genetic testing, whether to have their breasts and ovaries removed to avoid the possibility of disease. The striking contrast between the sophistication of diagnosis and the crudeness of preventive surgery forms the basis of historian Ilana Löwy’s important study. Löwy traces the history of prophylactic amputations through a century of preventive treatment and back to a long tradition of surgical management of gynecological problems. In the early twentieth century, surgeons came to believe that removing precancerous lesions—a term difficult to define even today—averted the danger of malignancy. This practice, Löwy finds, later led to surgical interventions for women with a hereditary predisposition to cancer but no detectable disease. Richly detailed stories of patients and surgeons in the United States, France, and the United Kingdom allow Löwy to compare the evolution of medical thought and practice—and personal choice—in these different cultures. Preventive Strikes aims to improve our understanding of professional, social, and cultural responses to cancer in the twenty-first century and to inform our reflections about how values are incorporated into routine medical practices.
Individualism and Society in the Era of Biomedical Enhancement
Few would question the necessity of artificial limbs for amputees. But what of surgery to lengthen the legs of children who are merely shorter than average? Hardly anyone would challenge the decision to prescribe Aricept to people with dementia. But is it acceptable to give the same medication to airline pilots seeking sharper mental focus on long-haul flights? Humans have engaged in biological self-improvement since long before recorded history, from the impotence-curing wild lotus brew of the ancient Egyptians to the herbal energy drink favored by early Olympians. Now biomedical enhancements are pushing the boundaries of possibility and acceptability. Where do we draw the line? How do we know the true ramifications of pioneering medicine? What price are we willing to pay for perfection? Maxwell J. Mehlman’s provocative examination of these issues speaks to fundamental questions of what it means to be human. He finds public officials ill-equipped to handle the ethical, scientific, and public policy quandaries of biomedical enhancement. Instead of engaging difficult questions of morality, access, fairness, and freedom, elected officials have crafted toothless and counterproductive laws and regulations. Mehlman outlines policy options to boost the societal benefits and minimize the risks from these technologies. In the process, he urges the public to face the ethical issues surrounding biomedical enhancement, lest our quest for perfection compromise our very humanity.
Ethical Standards and the Marketing of Prescription Drugs
The pharmaceutical industry has come under intense criticism in recent years. One poll found that 70% of the sample agreed that drug companies put profits ahead of people. Is this perception accurate? Have drug companies traded ethics for profits and placed people at risk?
In Profits before People? Leonard J. Weber exposes pharmaceutical industry practices that have raised ethical concerns. Providing systematic ethical analysis and reflection, he discusses such practices as compensating physicians for serving as speakers or consultants, providing incentives to physicians to enroll patients as subjects in clinical research, and advertising prescription drugs to the public through the mass media. Weber's critique of the industry is stern. While acknowledging that new industry guidelines are promising, he finds much room for improvement in the way drug companies market their products. Yet Weber makes a strong case that profits and ethics can coexist and that they are not mutually exclusive.
In an effort to understand the proper place of commerce in disseminating information about new drugs, the book aims to clarify basic responsibilities and to help identify sound ethical practices. It recognizes that ethics and law are not the same, that "having a right" is different from "doing the right thing," and that taking ethics seriously means recognizing that the law does not answer all questions about what is right. Weber points the way to more demanding standards and better practices that might begin to restore confidence in the drug industry.
LSD from Clinic to Campus
LSD's short but colorful history in North America carries with it the distinct cachet of counterculture and government experimentation. The truth about this mind-altering chemical cocktail is far more complex—and less controversial—than generally believed. Psychedelic Psychiatry is the tale of medical researchers working to understand LSD’s therapeutic properties just as escalating anxieties about drug abuse in modern society laid the groundwork for the end of experimentation at the edge of psychopharmacology. Historian Erika Dyck deftly recasts our understanding of LSD to show it as an experimental substance, a medical treatment, and a tool for exploring psychotic perspectives—as well as a recreational drug. She recounts the inside story of the early days of LSD research in small-town, prairie Canada, when Humphry Osmond and Abram Hoffer claimed incredible advances in treating alcoholism, understanding schizophrenia and other psychoses, and achieving empathy with their patients. In relating the drug’s short, strange trip, Dyck explains how concerns about countercultural trends led to the criminalization of LSD and other so-called psychedelic drugs—concordantly opening the way for an explosion in legal prescription pharmaceuticals—and points to the recent re-emergence of sanctioned psychotropic research among psychiatric practitioners. This challenge to the prevailing wisdom behind drug regulation and addiction therapy provides a historical corrective to our perception of LSD’s medical efficacy.
Diagnosis in Contemporary Society
Over a decade after medical sociologist Phil Brown called for a sociology of diagnosis, Putting a Name to It provides the first book-length, comprehensive framework for this emerging subdiscipline of medical sociology. Diagnosis is central to medicine. It creates social order, explains illness, identifies treatments, and predicts outcomes. Using concepts of medical sociology, Annemarie Goldstein Jutel sheds light on current knowledge about the components of diagnosis to outline how a sociology of diagnosis would function. She situates it within the broader discipline, lays out the directions it should explore, and discusses how the classification of illness and framing of diagnosis relate to social status and order. Jutel explains why this matters not just to doctor-patient relationships but also to the entire medical system. As a result, she argues, the sociological realm of diagnosis encompasses not only the ongoing controversy surrounding revisions to the Diagnostic and Statistical Manual of Mental Disorders in psychiatry but also hot-button issues such as genetic screening and pharmaceutical industry disease mongering. Both a challenge and a call to arms, Putting a Name to It is a lucid, persuasive argument for formalizing, professionalizing, and advancing longstanding practice. Jutel’s innovative, open approach and engaging arguments will find support among medical sociologists and practitioners and across much of the medical system.
Law, Policy, and Ethical Issues
From the cloning of Dolly the sheep a decade ago to more recent advances in embryonic stem cell research, new genetic technologies have often spurred polemical, ill-informed debates. Perhaps nowhere is this more evident than in the field of reproductive genetics, where difficult bioethical issues are distilled into sound bites and far-fetched claims for easy public consumption. The underlying complexities of reprogenetic research and practice are often drowned out by the noise. In this thoughtful and informed collection, Lori P. Knowles and Gregory E. Kaebnick bring together bioethicists from the United States, Canada, and the United Kingdom to examine the ethical and policy quandaries created by new genetic technologies. Featuring an overview of the field’s history (including lessons to be learned from eugenics), comparisons of international and domestic governmental regulations, and discussions of how the market and public opinion affect research, this book considers both the risks and the benefits of combining genetic and reproductive technologies. Concluding with a cautionary call for increased regulation, Reprogenetics introduces fact, history, and reason into a public discussion of complex and vexing issues.