The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients’ views on their participation in care and (...) decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: (1) active participants ( n = 7), (2) patients giving active consent ( n = 9), and (3) patients giving passive consent to medical decisions ( n = 18). (shrink)

Why has autonomy been a leading idea in philosophical writing on bioethics, and why has trust been marginal? In this important book, Onora O'Neill suggests that the conceptions of individual autonomy so widely relied on in bioethics are philosophically and ethically inadequate, and that they undermine rather than support relations of trust. She shows how Kant's non-individualistic view of autonomy provides a stronger basis for an approach to medicine, science and biotechnology, and does not marginalize untrustworthiness, while also explaining why (...) trustworthy individuals and institutions are often undeservingly mistrusted. Her arguments are illustrated with issues raised by practices such as the use of genetic information by the police or insurers, research using human tissues, uses of new reproductive technologies, and media practices for reporting on medicine, science and technology. Autonomy and Trust in Bioethics will appeal to a wide range of readers in ethics, bioethics and related disciplines. (shrink)

Next SectionFollowing the influential Gifford and Reith lectures by Onora O’Neill, this paper explores further the paradigm of individual autonomy which has been so dominant in bioethics until recently and concurs that it is an aberrant application and that conceptions of individual autonomy cannot provide a sufficient and convincing starting point for ethics within medical practice. We suggest that revision of the operational definition of patient autonomy is required for the twenty first century. We follow O’Neill in recommending a principled (...) version of patient autonomy, which for us involves the provision of sufficient and understandable information and space for patients, who have the capacity to make a settled choice about medical interventions on themselves, to do so responsibly in a manner considerate to others. We test it against the patient–doctor relationship in which each fully respects the autonomy of the other based on an unspoken covenant and bilateral trust between the doctor and patient. Indeed we consider that the dominance of the individual autonomy paradigm harmed that relationship. Although it seems to eliminate any residue of medical paternalism we suggest that it has tended to replace it with an equally (or possibly even more) unacceptable bioethical paternalism. In addition it may, for example, lead some doctors to consider mistakenly that unthinking acquiescence to a requested intervention against their clinical judgement is honouring “patient autonomy” when it is, in fact, abrogation of their duty as doctors. (shrink)

While twentieth-century medical ethics has focused on the duty of physicians to benefit their patients, the next century will see that duty challenged in three ways. First, we will increasingly recognize that it is unrealistic to expect physicians to be able to determine what will benefit their patients. Either they limit their attention to medical well-being when total well-being is the proper end of the patient or they strive for total well-being, which takes them beyond their expertise. Even within the (...) medical sphere, they have no basis for choosing among the proper medical goals for medicine. Also, there are many plausible strategies for relating predicted benefits to harms, and physicians cannot be expert in picking among these strategies. Second, increasingly plausible ethical systems recognize that in some cases, patient benefit must be sacrificed to protect patient rights including the right to the truth, to have promises kept, to have autonomy respected, and to not be killed. Third, ethics of the next century will increasingly recognize that some patient benefits must be sacrificed to fulfill duties to others - either the duty to serve the interests of others or other duties such as keeping promises, telling the truth, and, particularly, promoting justice. Physicians in the twenty-first century will be seen as having a new, more limited duty to assist the patient in pursuing the patient's understanding of the patient's interest within the constraints of deontological ethical principles and externally imposed duties to promote justice. The result will be a duty to be loyal to the consumer of health care with the recognition that often this will mean that the physician is not permitted to pursue the physician's understanding of the patient's well-being. (shrink)

abstract Trusting agents characteristically anticipate beneficial outcomes, under conditions of uncertainty, in their engagement with others. However, debates about trust incorporate different interpretations of risk, uncertainty, calculation, affect, morality and motivation in explaining when trust is appropriate and how it operates. This article argues that discussions about trust have produced a concept without coherent boundaries and with little operational value. Two paradigms are identified, which distinguish the characteristics of trust and confidence. It is argued that a reliance on confidence in (...) human affairs makes trust redundant and that this has undesirable moral consequences. Discussion is illustrated by the UK Government's ‘modernisation’ policy in health and social care, which privileges confidence in systems over trust in moral agents. (shrink)

Although the physician’s use and misuse of power have been discussed in the social sciences and in literature, they have never been explored in medical ethics until now. In this book, Dr. Howard Brody argues that the central task is not to reduce the physician’s power, as others have suggested, but to develop guidelines for its use, so that the doctor shares with the patient both information and the responsibility for deciding on appropriate treatment. Dr. Brody first reviews literary works (...) dealing with medical power, from Dostoevsky’s “The Grand Inquisitor” to stories by William Carlos Williams, Vonda McIntyre, and Richard Selzer. These works, he shows, reveal the healers’ ambivalence over their own powers and patients’ fears of the abuse of power. Dr. Brody then points out important but neglected ethical issues that emerge from an analysis of power, such as the tension between care of individual patients and the pressures of the doctor’s workload; the rescue fantasy that impels some physicians to extraordinary lengths to save a life; and the economic system, which rewards surgeons and other specialists more than it does physicians who spend time talking with patients about their problems. He also shows how the perspective of shared power can shed new light on standard topics in medical ethics—from informed consent and confidentiality to resource allocation and cost containment. (shrink)