In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (...) (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)

: The standard bioethics account is that respecting patient autonomy means ensuring patients make their own decisions. In fact, respecting patient autonomy often has more to do with the overall shape and meaning of patients' health care regimes, and sometimes, at least, patients will very reasonably defer to medical authority.

It is my view that one essential difference between persons and other creatures is to be found in the structure of a person's will. Besides wanting and choosing and being moved to do this or that, men may also want to have certain desires and motives. They are capable of wanting to be different, in their preferences and purposes, from what they are. Many animals appear to have the capacity for what I shall call "first-order desires" or "desires of the (...) first order," which are simply desires to do or not to do one thing or another. No animal other than man, however, appears to have the capacity for reflective self-evaluation that is manifested in the formation of second-order desires. (shrink)

Behavioural variant frontotemporal dementia (bvFTD) is characterized by an absence of obvious cognitive impairment and presence of symptoms such as disinhibition, social inappropriateness, personality changes, hyper-sexuality, and hyper-orality. Affected individuals do not feel concerned enough about their actions to be deterred from violating social norms, and their antisocial behaviours are most likely caused by the neurodegenerative processes in the frontal and anterior temporal lobes. BvFTD patients present a challenge for the traditional notion of autonomy and the medical and criminal justice (...) systems. Antisocial behaviour is often the earliest recognized manifestation of bvFTD. Given that the symptoms are not specific and that atrophy of the frontal lobes is only observable with structural neuroimaging in the later stages of the disease, it is hard to ascertain their autonomy. Recently proposed re-conceptualizations of autonomy (Dworkin’s, Jaworska’s, and Dubljević’s) can, however, be sufficiently redefined to provide explicit rules and offer nuanced guidance in such cases. A combination of notions of autonomy gives the most nuanced guidance with three modifications: 1) including socio-moral judgement in the notion of “normal cognitive competence,” 2) excluding in-principle un-endorsable ideals from the notion of “capacity to value,” and 3) redefining ideal-typical degrees of compulsion (mild, severe, and total). (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

[A] man does not consist of memory alone. He has feeling, will, sensibilities, moral being…. And it is here … that you may find ways to touch him.—A. R. Luria1.

In 1993, Professor of Jurisprudence, Ronald Dworkin of Oxford University and Professor of Law at New York University, delivered the Georgetown Law Center’s thirteenth Annual Philip A. Hart Memorial Lecture: "Life’s Dominion: An Argument About Abortion and Euthanasia." Dworkin is Professor of Philosophy and Frank Henry Sommer Professor of Law at New York University. He received B.A. degrees from both Harvard College and Oxford University, and an LL.B. from Harvard Law School and clerked for Judge Learned Hand. He was associated (...) with a law firm in New York (Sullivan and Cromwell) and was a professor of law at Yale University Law School from 1962-1969. He has been Professor of Jurisprudence at Oxford and Fellow of University College since 1969. He has a joint appointment at Oxford and at NYU where he is a professor both in the Law School and the Philosophy Department. He is a Fellow of the British Academy and a member of the American Academy of Arts and Sciences. Professor Dworkin is the author of many articles in philosophical and legal journals as well as articles on legal and political topics in the New York Review of Books. He has written Taking Rights Seriously (1977), A Matter of Principle (1985), Law’s Empire (1986), Philosophical Issues in Senile Dementia (1987), A Bill of Rights for Britain (1990), Life’s Dominion (1993), and Freedom’s Law (1996). (shrink)

Advance directives permit competent adult patients to provide guidance regarding their care in the event that they lose the capacity to make medical decisions. One concern about the use of advance directives is the possibility that, in certain cases in which a patient undergoes massive psychological change, the individual who exists after such change is literally a (numerically) distinct individual from the person who completed the directive. If this is true, there is good reason to question the authority of the (...) directive Ð which is supposed to apply to the individual who completed it, not to someone else. This is `the someone else problem'. After briefly introducing advance directives as a basis for medical decision-making, this paper elaborates `the someone else problem' in the context of severe dementia. The paper then reconstructs the reasoning that leads to this putative problem and exposes the important underlying assumption that we are essentially persons. An alternative view of what we are, one that regards personhood as inessential, is then considered, before several arguments are advanced in favor of that alternative view. The paper next explores implications for advance directives: `The someone else problem' is effectively dissolved, while it is noted that a related problem (one beyond the paper's scope) may persist. A few implications beyond advance directives are also identified. (shrink)

Respecting the autonomy of disabled people is an important ethical issue for providers of long-term care. In this influential book, George Agich abandons comfortable abstractions to reveal the concrete threats to personal autonomy in this setting, where ethical conflict, dilemma and tragedy are inescapable. He argues that liberal accounts of autonomy and individual rights are insufficient, and offers an account of autonomy that matches the realities of long-term care. The book therefore offers a framework for carers to develop an ethic (...) of long-term care within the complex environment in which many dependent and aged people find themselves. Previously published as Autonomy and Long-term Care, this revised edition, in paperback for the first time, takes account of recent work and develops the author's views of what autonomy means in the real world. It will have wide appeal among bioethicists and health care professionals. (shrink)

The standard bioethics account is that respecting patient autonomy means ensuring that patients make their own decisions, and that requires that they give informed consent. In fact, respecting autonomy often has more to do with the overall shape and meaning of their health care regimes. Ideally, patients will sometimes take control of their health care but sometimes defer to medical authority. The physician's task is, in part, to inculcate patients into the appropriate good health care regimes.

The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...) a substantive, perfectionist approach meets the theoretical requirements for an account of autonomy and also provides practical guidance. As Rebecca Walker argues, bioethics requires a more conceptually adequate account... (shrink)

Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or (...) late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study. (shrink)