Justified paternalism: the nature of beneficence in the care of dementia patients.

The issue of patient autonomy in cases of permanent dementia has recently received a great deal of philosophical attention. Specifically, many have worried about ethical issues surrounding advance directives in which people specify how they shall be treated when they are no longer competent to make their own medical decisions. Ronald Dworkin has been a staunch defender of what he calls precedent autonomy in these cases, believing persons have a right to control, to some degree, how their lives will end, despite the common intuition that the principle of beneficence requires us to improve the experiential quality of patients' lives. Objections have been brought against Dworkin on a number of fronts, including worries about personal identity theory and informed consent. Here, I offer an objection to Dworkin's assessment of the nature of paternalism as it relates to cases of permanent dementia.

The two-faced angel: do phase I clinical trials have a place in modern hospice?

Increasingly, bioethicists have been exploring the possibility of making phase I clinical trials available to hospice patients. Phase I clinical trials are designed to test a drug's safety and dosage, not its effectiveness. Participants in these studies generally do not understand that the purpose of the investigation is not to benefit them, thus challenging the notion of informed consent. But furthermore, the idea that patients believe experimental drugs will help them is contrary to the principles of hospice. Also, the very nature of the research in phase I conflicts with hospice's methods. For these reasons, this paper finds that the two models must remain distinct.

Whose interests are they, anyway?

This review both praises Richard Miller's book--a thoughtful, judicious, and comprehensive analysis of bioethics for the pediatric age group, notably the first effort worthy of the name--and points out the work still to be done in this area, work firmly based in and illuminated by Miller's ground-breaking thesis. Specifically, the book rightly compels us to recognize obligations of beneficence as primary and to refocus on the child's basic interests, rather than putative "best" interests. There remains much to be done in defining and discerning basic interests and in distinguishing whose interests are on the table when decisions are being made for seriously ill and dying children.

Hospice and the politics of spirituality.

Within the hospice literature, spirituality and religion are usually defined in opposition to one another, with religion negatively associated with the external, authoritarian doctrines of Christianity and spirituality positively associated with the free search for truth, meaning, and authenticity. According to survey data, however, most Americans integrate spirituality and traditional religious commitments. The hospice literature is promoting spirituality to its own detriment by alienating potential patients and depriving religious patients of the resources that religious traditions and their affiliated religious communities have to offer.

On the impermissibility of euthanasia in Catholic healthcare organizations.

Roman Catholic healthcare institutions in the United States face a number of threats to the integrity of their missions, including the increasing religious and moral pluralism of society and the financial crisis many organizations face. These organizations in the United States often have fought fervently to avoid being obligated to provide interventions they deem intrinsically immoral, such as abortion. Such institutions no doubt have made numerous accommodations and changes in how they operate in response to the growing pluralism of our society, but they have resisted crossing certain lines and providing particular interventions deemed objectively wrong. Catholic hospitals in Belgium have responded differently to pluralism. In response to a growing diversity of moral views and to the Belgian Act of Euthanasia of 2002, Catholic hospitals in Belgium now engage in euthanasia. This essay examines a defense that has been offered of this practice of euthanasia in Catholic hospitals and argues that it is misguided.

Separation of conjoined twins and the principle of double effect.

This article examines the relationship between the principle of double effect and justification for separation surgeries for conjoined twins. First, the principle of double effect is examined in light of its historical context. It is argued that it can only operate under an absolutist view of good and evil that is compatible with the Bible. Given this foundation for application, scenarios for separating conjoined twins are considered against the criteria for the principle of double effect. It is concluded that the principle of double effect cannot be applied to cases wherein one of the twins must be killed. However, it is noted that this does not leave decision makers without options.

Bodyworlds and the ethics of using human remains: a preliminary discussion.

Accepting the claim that the living have some moral duties with regard to dead bodies, this paper explores those duties and how they bear on the popular travelling exhibition Bodyworlds. I argue that the concept of informed consent presupposes substantial duties to the dead, namely duties that reckon with the meaning of the act in question. An attitude of respect and not regarding human remains as mere raw material are non-alienable substantial duties. I found the ethos of Bodyworlds premature but full of promises such as public attitudes to organ donations. At the practical level I conclude that Bodyworlds should use only willed donations or unclaimed bodies for which dignified funerals are not available. In the case of live donations, Bodyworlds has a duty to participate in the medical care of needy donors. However, secrecy with regard to the source of cadavers seems to be the most troublesome aspect of Bodyworlds.

"Who should survive?: one of the choices on our conscience": mental retardation and the history of contemporary bioethics.

The film "Who Should Survive?: One of the Choices on Our Conscience" contains a dramatization of the death of an infant with Down syndrome as the result of the parents' decision not to have a congenital intestinal obstruction surgically corrected. The dramatization was based on two similar cases at The Johns Hopkins Hospital and was financed by the Joseph P. Kennedy, Jr., Foundation. When "Who Should Survive?" was exhibited in 1971, the public reaction was generally critical of the parents' decision and the physicians' inaction. Although technological developments in medicine were a necessary condition for the production of this film and its unanticipated reception, they were not a sufficient condition. The proximate cause was a changed understanding of the capabilities of individuals with Down syndrome. Part of the impetus for this change was data showing the adverse effects of institutionalization on normal children.

Survey of the general public's attitudes toward advance directives in Japan: how to respect patients' preferences.

BACKGROUND: Japanese people have become increasingly interested in the expression and enhancement of their individual autonomy in medical decisions made regarding medical treatment at and toward the end of life. However, while many Western countries have implemented legislation that deals with patient autonomy in the case of terminal illness, no such legislation exists in Japan. The rationale for this research is based on the need to investigate patient's preferences regarding treatment at the end of life in order to re-evaluate advance directives policy and practice. METHODS: We conducted a cross-sectional survey with 418 members of the general middle-aged and senior adults (aged between 40 and 65) in Tokyo, Japan. Respondents were asked about their attitudes toward advance directives, and preferences toward treatment options. RESULTS: Over 60% of respondents agreed that it is better to express their wishes regarding advance directives (treatment preferences in writing, appointment of proxy for care decision making, appointment of legal administrator of property, stating preferences regarding disposal of one's property and funeral arrangements) but less than 10% of them had already done so. About 60% of respondents in this study preferred to indicate treatment preferences in broad rather than concrete terms. Over 80% would like to decide treatment preferences in consultation with others (22.2% with their proxy, 11.0% with the doctor, and 47.8% with both their proxy and the doctor). CONCLUSION: This study revealed that many Japanese people indicate an interest in undertaking advance directives. This study found that there is a range of preferences regarding how advance directives are undertaken, thus it is important to recognize that any processes put into place should allow flexibility in order to best respect patients' wishes and autonomy.