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- Margaret Brazier & Mary Lobjoit (1991). Protecting the Vulnerable: Autonomy and Consent in Health Care. Routledge.Protecting the Vulnerable explores the reality of patient control and choice in health care and analyzes how decisions should be made on behalf of those deemed incapable of making decisions. The contributors, distinguished experts from the disciplines of medicine, ethics, theology, and law, look at the complex problem of autonomy and consent in health care and clinical research today from an illuminating perspective--its impact on the vulnerable members of society. The essays move from the exploration of lingering paternalism in health care to the acute dilemma of treatment of and research on newborn babies. In covering both general and specific problems the collection reveals how exploitation can occur when the right of autonomy is eroded and where informed consent is illusory. Particularly vulnerable groups, such as children and people with mental handicaps, are discussed alongside cases where the vulnerability is itself an issue. Other areas covered include: `gesture' suicides, the practical problems of doctors in dealing with dependent patients, and the limits of proxy consent. All health care professionals, ethicists, policy makers, and lawyers currently engaged in the study or practice of health care ethics will find Protecting the Vulnerable to be a vital source of information for many years to come.
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In the practice of medicine there has long been a conflict between patient management and respect for patient autonomy. In recent years this conflict has taken on a new form as patient management has increasingly been shifted from physicians to insurers, employers, and health care bureaucracies. The consequence has been a diminshment of both physician and patient autonomy and a parallel diminishment of medical record confidentiality. Although the new managers pay lip service to the rights of patients to confidentiality of their records, in fact they advocate very liberal medical records access policies. They argue that a wide range of parties has a need to know the contents of individually identifiable medical records in order to control costs, promote quality of care, and undertake research in the public interest. Broad interpretations of the need to know, however, are at odds with strict interpretations of the right to confidentiality. Strict confidentiality policies require that, with few exceptions, patient consent be obtained whenever a patient's record is used outside the treatment context. The traditional criterion for overriding the consent requirement has been that without the override some harm would directly result. This rule is now challenged by the claim that patients have a duty to make their records available for a wide range of research and public health purposes. The longstanding tension between physician responsibility for patient welfare and respect for patient autonomy is being replaced by a debatable requirement that both physician and patient autonomy be subordinated to the goals of data collection and analysis.
In order to protect patients against medical paternalism, patients have been granted the right to respect of their autonomy. This right is operationalized first and foremost through the phenomenon of informed consent. If the patient withholds consent, medical treatment, including life-saving treatment, may not be provided. However, there is one proviso: The patient must be competent to realize his autonomy and reach a decision about his own care that reflects that autonomy. Since one of the most important patient rights hinges on the patient's competence, it is crucially important that patient decision making incompetence is clearly defined and can be diagnosed with the greatest possible degree of sensitivity and, even more important, specificity. Unfortunately, the reality is quite different. There is little consensus in the scientific literature and even less among clinicians and in the law as to what competence exactly means, let alone how it can be diagnosed reliably. And yet, patients are deemed incompetent on a daily basis, losing the right to respect of their autonomy. In this article, we set out to fill that hiatus by beginning at the very beginning, the literal meaning of the term competence. We suggest a generic definition of competence and derive four necessary conditions of competence. We then transpose this definition to the health care context and discuss patient decision making competence.
In this eye-opening look at the doctor-patient decision-making process, physician and law professor Jay Katz examines the time-honored belief in the virtue of silent care and patient compliance. Historically, the doctor-patient relationship has been based on a one-way trust -- despite recent judicial attempts to give patients a greater voice through the doctrine of informed consent. Katz criticizes doctors for encouraging patients to relinquish their autonomy, and demonstrates the detrimental effect their silence has on good patient care. Seeing a growing need in this age of medical science and sophisticated technology for more honest and complete communication between physician and patients, he advocates a new, informed dialogue that respects the rights and needs of both sides. In a new foreword to this edition of The Silent World of Doctor and Patient , Alexander Morgan Capron outlines the changes in medical ethics practice that have occurred since the book was first published in 1984, paying particular attention to the hotly debated issues of physician-assisted suicide and informed consent in managed care.
The puzzling case of the broken arm -- Hernias, diets, and drugs -- Why physicians cannot know what will benefit patients -- Sacrificing patient benefit to protect patient rights -- Societal interests and duties to others -- The new, limited, twenty-first-century role for physicians as patient assistants -- Abandoning modern medical concepts: doctor's "orders" and hospital "discharge" -- Medicine can't "indicate": so why do we talk that way? --"Treatments of choice" and "medical necessity": who is fooling whom? -- Abandoning informed consent -- Why physicians get it wrong and the alternatives to consent: patient choice and deep value pairing -- The end of prescribing: why prescription writing is irrational -- The alternatives to prescribing -- Are fat people overweight? -- Beyond prettiness: death, disease, and being fat -- Universal but varied health insurance: only separate is equal -- Health insurance: the case for multiple lists -- Why hospice care should not be a part of ideal health care I: the history of the hospice -- Why hospice care should not be a part of ideal health care II: hospice in a postmodern era -- Randomized human experimentation: the modern dilemma -- Randomized human experimentation: a proposal for the new medicine -- Clinical practice guidelines and why they are wrong -- Outcomes research and how values sneak into finding of fact -- The consensus of medical experts and why it is wrong so often.
In contemporary Western biomedical ethics, informed consent practices are commonly justified in terms of the intrinsic value of patient autonomy. James Stacey Taylor maintains that this conception of the moral grounding of medical informed consent is mistaken. On the basis of his reasoning to that effect, Taylor argues that medical informed consent is justified by the instrumental value of personal autonomy. In this article, I examine whether Taylor's justification of medical informed consent is plausible.
Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received in a lukewarm fashion by most clinicians, many simply rejecting what they commonly refer to as the `myth of informed consent'. The purpose of this book is to defuse this seemingly intractable controversy by offering an efficient and effective operational model of informed consent. This goal is pursued first by reviewing and evaluating, in detail, the agendas, arguments, and supporting materials of its proponents and detractors. A comprehensive review of empirical studies of informed consent is provided, as well as a detailed reflection on the common clinician experience with attempts at informed consent and the exercise of autonomy by patients. In the end, informed consent is recast as a management tool for pursuing clinically and ethically important goods and values that any clinician should see as meriting pursuit. Concurrently, the model incorporates a flexible, anticipatory approach that recognizes that no static, generic ritual can legitimately pursue the quite variable goods and values that may be at stake with different patients in different situations. Finally, efficiency of provision is addressed by not pursuing the unattainable and ancillary. Throughout, the traditional principle of beneficence is appealed to toward articulating an operational model of informed consent as an intervention that is likely to change outcomes at the bedside for the better.
From Hippocrates to paternalism to autonomy : the new hegemony -- From autonomy to consent -- Consent, autonomy, and the law -- Autonomy at the end of life -- Autonomy and pregnancy -- Autonomy and genetic information -- Autonomy and organ transplantation -- Autonomy, consent, and the law.
Machine generated contents note: 1. Introduction: why focus on informed consent?; 2. Deciding who decides: capacity and consent; 3. Putting the informed into 'informed consent': information and decision-making; 4. Freedom of expression: the voluntary nature of consent; 5. A patient's prerogative? The continuing nature of consent; 6. Concluding words about consent; Index.
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