Bioethicists to the Barricades!

In this article I begin with an anecdote as a way of exploring just exactly what activism entails. Are we talking about the kind of activism every citizen ought to engage in? Should we confine our topic to activism in health care settings? Just what is activism anyway, and how much and what kind ought bioethicists to engage in? Finally, I consider the possibility that it's perfectly permissible for bioethicists not to be activists of any kind.

Family Members' Existential and Moral Dilemmas With Coercion in Mental Healthcare.

Coercion in mental healthcare does not only affect the patient, but also the patient's families. Using data from interviews with 36 family members of adult and adolescent people with mental health problems and coercion experiences, the present narrative study explores family members' existential and moral dilemmas regarding coercion and the factors influencing these dilemmas. Four major themes are identified: the ambiguity of coercion; struggling to stay connected and establishing collaboration; worries and distress regarding compulsory care; and dilemmas regarding initiating coercion. Subsequently, coercion can reduce, but also add burden for the family by creating strains on family relations, dilemmas, (moral) distress, and retrospective regrets; this is reinforced by the lack of information or involvement and low-quality care. Subsequently, it is a moral obligation to develop more responsive health services and professionals who provide more guidance and balanced information to increase the possibilities for voluntary alternatives and informed decision making.

In the Matter of Stories.

This essay lays out some of the many resources that a background in literary studies has to offer bioethics. After identifying four useful characteristics of stories, it briefly discusses some kinds of moral work that stories can be put to, including countering ethically undesirable stories and modeling ethically troubling situations. Stories can be invoked in our moral reasoning, compared and parsed, and used to teach moral lessons. They can help us discern which moral concepts are operative in a specific instance. Our personal identities consist of stories, which help us understand who we and other people are. Stories can also be parodied, for political or other effect. Stories can perform these moral functions only to the extent that the persons telling or invoking or parodying them are themselves morally competent. But given that competence, a scholarly grasp of literature and narrative can greatly enhance bioethical reflection.

Where families and healthcare meet.

Recent developments in professional healthcare pose moral problems that standard bioethics cannot even identify as problems, but that are fully visible when redefined as problems in the ethics of families. Here, we add to the growing body of work that began in the 1990 s by demonstrating the need for a distinctive ethics of families. First, we discuss what 'family' means and why families can matter so deeply to the lives of those within them. Then, we briefly sketch how, according to an ethics of families, responsibilities must be negotiated against the backdrop of family relationships, treatment decisions must be made in the light of these negotiated responsibilities and justice must be served, both between families and society more generally and within families themselves.

The surrogate's authority.

The authority of surrogates-often close family members-to make treatment decisions for previously capacitated patients is said to come from their knowledge of the patient, which they are to draw on as they exercise substituted judgment on the patient's behalf. However, proxy accuracy studies call this authority into question, hence the Patient Preference Predictor (PPP). We identify two problems with contemporary understandings of the surrogate's role. The first is with the assumption that knowledge of the patient entails knowledge of what the patient's choice of treatment would be. The second is with the assumption that a good decision reproduces the content of that choice. If we are right, then the PPP, helpful though it might be in guiding surrogates' decisions, nevertheless would hold them to the wrong standards and in that way could add to, rather than relieve, the stress they experience as they try to do their job.

Toward a naturalized clinical ethics.

Clinical ethicists tend to see themselves as moral experts to be called in when clinicians encounter a particularly difficult moral problem. Drawing on a naturalized moral epistemology, we argue that clinicians already have the moral knowledge they need-the norms and values that guide clinical practice are built right into the various health care professions. To reflect on their practice, clinicians need to (a) be aware of their own professional norms and values; (b) be able to express them to their colleagues, their patients, and the patients' families; and (c) work together with these other actors to provide ethically responsible care. The ethicist's job is to use her own training in three kinds of philosophical reflection as the basis for teaching clinicians how to think about what they do.

The woman question in medicine: an update.

The women's movement rose to prominence decades ago, but women continue to be discriminated against in their encounters with medicine, as both patients and practitioners. How should bioethics think about this state of affairs?

Theoretical resources for a globalised bioethics.

In an age of global capitalism, pandemics, far-flung biobanks, multinational drug trials and telemedicine it is impossible for bioethicists to ignore the global dimensions of their field. However, if they are to do good work on the issues that globalisation requires of them, they need theoretical resources that are up to the task. This paper identifies four distinct understandings of 'globalised' in the bioethics literature: (1) a focus on global issues; (2) an attempt to develop a universal ethical theory that can transcend cultural differences; (3) an awareness of how bioethics itself has expanded, with new centres and journals emerging in nearly every corner of the globe; (4) a concern to avoid cultural imperialism in encounters with other societies. Each of these approaches to globalisation has some merit, as will be shown. The difficulty with them is that the standard theoretical tools on which they rely are not designed for cross-cultural ethical reflection. As a result, they leave important considerations hidden. A set of theoretical resources is proposed to deal with the moral puzzles of globalisation. Abandoning idealised moral theory, a normative framework is developed that is sensitive enough to account for differences without losing the broader context in which ethical issues arise. An empirically nourished, self-reflexive, socially inquisitive, politically critical and inclusive ethics allows bioethicists the flexibility they need to pick up on the morally relevant particulars of this situation here without losing sight of the broader cultural contexts in which it all takes place.

Autonomy, beneficence, and gezelligheid: lessons in moral theory from the Dutch.

American bioethicists lack the theoretical resources to work in cross-cultural settings. All we have are two approaches to ethics--principles vs. narratives--that are mostly at odds, and neither of which is up to the job. If moral principles are too abstract to be useful, and if stories cannot provide moral authority, then where do we find our moral norms?

Surgeon General's Warning: Gender Is Bad for Your Health.

Gender, most feminists agree, isn't a fact about people in the same way that height or hair color is. Genders are constructed within and are part of a power system circulating through all of society that sets standards for men's and women's identities and places men's interests above women's. The system is bad for all of us, but especially for women, genderqueer people, and men of color. Here, I want to point out ways in which it's bad for our health. I'll start with abortion, as laws recently passed in a number of states have restricted women's access to the point where it's nearly nonexistent.

Ending the life of a newborn: the Groningen Protocol.

Several criticisms of the Groningen Protocol rest on misunderstandings about how it works or which babies it concerns. Some other objections-about quality-of-life judgments and parents' role in making decisions about their children-cannot be easily cleared away, but at least in the context of Dutch culture and medicine, the protocol is acceptable.

The Intimate Responsibility of Surrogate Decision-Making.

Daniel Brudney's clear-headed analysis, in this issue of the Hastings Center Report, of the difference between a patient's and a surrogate's right to make medical treatment decisions contributes to a longstanding conversation in bioethics. Brudney offers an epistemological and a moral argument for the patient's and the surrogate's right to decide. The epistemological argument is the same for both parties: the (competent) patient has a right to decide because she is presumed to know her own interests better than anyone else, and the surrogate is entitled to make decisions because she knows the patient better than anyone else. However, argues Brudney, the moral arguments are not parallel. The patient's moral right to decide for herself is an exercise of autonomy, but the only ground for the responsibility held by the surrogate, says Brudney, is that she knows the patient better than the health care professionals do. If in fact that's not the case, then she forfeits her right to be the patient's surrogate. For all the clarity and force of his argument, I think Brudney may be barking up the wrong tree. In cases of proxy decision-making, it's intimacy, not knowledge, that does the heavy moral lifting.

Bioethics' gender.

I argue that the field of bioethics is gendered feminine, but that the methods it uses to resist this gender identity pose real harm to actual women. Starting with an explanation of what I take 'gender' to be, I enumerate four drawbacks to being gendered feminine. I then argue that bioethics suffers from three of the same four drawbacks. I show how the field escapes the fourth disadvantage by adopting a masculine persona that inflicts damage on women, and conclude by urging bioethicists to reflect on their complicity in abusive power systems such as gender, race and class.

Enhancing reflection: an interpersonal exercise in ethics education.

There are no moral cookbooks--no algorithms for whipping up moral confections to suit every occasion. But more modest and flexible tools might still be useful for practical ethics. One team describes how professionals can be taught to use a framework for understanding moral problems.

Why families matter.

Serious illness puts pressure not only on individual family members but also on the family itself. The care of an acutely ill child requires the family to channel many of its resources toward a single member--an arrangement that can usually be sustained for a while but that cannot continue indefinitely while the other members do without. Illness disrupts ordinary familial functions and, if it is serious enough, threatens to break the family altogether. In this article, I argue that there are situations in which the threat to family integrity is so real and serious that the interests of parents or siblings or sometimes grandparents may override the interests of the pediatric patient.