A New York court recently struck down state Office of Mental Health regulations governing research involving subjects with impaired decisionmaking capacity. The court held that neither incapacitated adults nor minors could participate in any research protocol that contained a nontherapeutic element, irrespective of possible benefits to the subject or the importance of the knowledge to be gained. Although the decision rested on a technical point of law and dealt only with psychiatric research, the court's holding has significantly broader implications.

Family members are widely believed to be the best decisionmakers for those with brain injuries, but the rehabilitation process does not in fact give them that authority.

This paper evaluates Sara Goering’s recent attempt to use the Rawlsian notion of the veil of ignorance as a tool for distinguishing permissible from impermissible forms of genetic engineering. I argue that her article fails due to a failure to include vital contextual information in the right way.

This CQ department is dedicated to bringing noted bioethicsts together in order to debate some of the most perplexing contemporary bioethics issues. You are encouraged to contact department editor, D. Micah Hester, UAMS/Humanities, 4301 W. Markham St. #646, Little Rock, AR 72205, with any suggestions for debate topics and interlocutors you would like to see published herein.

One of the most challenging and rewarding roles for in-house hospital attorneys is serving as a member of their hospital’s Bioethics Committee. As a member of the Committee, an attorney assists in developing institutional ethics policies and guidelines, and also participates in ethics consultations involving disputes about patient care. Institutions such as the Author’s employer, Texas Children’s Hospital, promote open and honest communications between members of a patient’s health care team and the patient’s parents and family; however, when communications break (...) down, the Committee’s goal is to provide an objective forum where disputes can be discussed and hopefully resolved in a professional, ethical manner. (shrink)

This essay has two aims: The first is to demonstrate that the basic conceptual framework of principal/agent theory can be fruitfully applied to decisionmaking in health care and in such a way as to facilitate the more efficient pursuit of the moral values of individual well-being and autonomy which health care is supposed to promote. The second is to show that this application results in an enrichment of principal/agent theory itself, by removing some of the limitations on the theory (...) that are valid only for the more exclusively self-interested, commercial contexts to which the theory is usually applied. (shrink)

Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, (...) by using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values. (shrink)

Should the authority to make treatment decisions be extended to the competent patient's family? Neither arguments from fairness nor communitarian concerns justify such an infringement on patient autonomy.

As part of an effort to look at for bioethicists interested in clinical decisionmaking, Erik Parens, the editor of this special section, asked us to look at social class. When we began our research for this paper, we were surprised to find that although bioethicists have written much on social class and such macrolevel issues as access to healthcare and the distribution of scarce resources, and have paid some attention to the effects of class on patient-provider relationships, bioethicists have (...) written little specifically that looks at the implications of social class for medical decisions in individual cases. (shrink)

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within (...) which to make decisions that will facilitate their child's long‐term autonomy, not only her present‐day autonomy. Moreover, third‐party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making. (shrink)

Mackenzie Graham has made an important contribution to the literature on decisionmaking for patients with disorders of consciousness. He argues, and I agree, that decisions for unresponsive patients who are known to retain some degree of covert awareness ought to focus on current interests, since such patients likely retain the kinds of mental capacities that in ordinary life command our current respect and attention. If he is right, then it is not appropriate to make decisions for such patients by (...) appealing to the values they had in the past, either the values expressed in an advance directive or the values recalled by a surrogate. There are two things I wish to add to the discussion. My first point is somewhat critical, for although I agree with his general conclusion about how, ideally, such decisions should be approached, I remain skeptical about whether his conclusion offers decisionmakers real practical help. The problem with these cases is that the evidence we have about the nature of the patient’s current interests is minimal or nonexistent. However—and this is important—Graham’s conclusion will be extremely relevant if in the future, our ability to communicate with such patients improves, as I hope it will. This leads to my second point. Graham’s conclusion illustrates a more general problem with our standard framework for decisionmaking for previously competent patients, a problem that has not been adequately recognized. So, in what follows, I explain the problem I see and offer some brief thoughts about solutions. (shrink)

Because of the emphasis on individualism and self-governance, medical interventions and medical research in Western nations are preceded by attempts to obtain informed consent from the individual patient or potential research subject. Individual autonomy expresses our belief that persons are ends in themselves and not merely instrumentalities to achieve the goals of others. By respecting the patient or potential research subject in the context of medical decisionmaking, we acknowledge that these individuals are moral agents. Thus, individual autonomy is an (...) important feature of morality as it is practiced in the West. However, there are at least two circumstances in which individual autonomy appears to be threatened. One is embodied in nonwestern societies that favor collective decisionmaking over that of the individual. The other is related to the need for family histories and family testing to determine the susceptibility of family members to some genetically based disease. In both cases, individual judgment appears to be made subordinate to collective judgment. (shrink)

The "grassroots turn" in bioethical discussions about justice in allocation of health care resources has attracted a great deal of support; in the absence of a convincing theory of justice in rationing, democratic decisionmaking concerning priority setting emerges with a kind of inevitability. Yet there remain suspicions about this approach – most importantly, worries about the socially corrosive impact of explicit, public decisionmaking that in effect sets a price on the lives of persons. These worries have been quieted, (...) particularly by the work of Leonard Fleck, but not altogether stilled. I explore more sympathetically the ideals to which concerns about public rationing somewhat dimly respond, and suggest constraints on priority setting discussions which might accommodate those ideals rather better. Keywords: "grassroots" decisionmaking, publicity principle, pricing life, rationing health care CiteULike Connotea Del.icio.us What's this? (shrink)

Patients with amyotrophic lateral sclerosis (ALS) face many difficult, timing-sensitive decisions over the course of their illness, weighing present versus future harms and benefits. Supplemented by interviews with people with ALS, we argue for a relational approach to understanding these decisions and their effects on identity. We highlight two critical aspects of the patient–caregiver relationship: (1) the extent to which each may rely on the other leaves their wellbeing intimately intertwined and (2) patients often require others to help with the (...) imaginative task of considering possible futures for each therapeutic option. We show why family involvement in decisionmaking practices can be so critical, and shed light on the ways intimate others help preserve and protect people’s identities amidst the destabilizing uncertainty illness and treatment can bring. (shrink)

Applying bioethical principles can be difficult in resource-poor environments, particularly for Western doctors unfamiliar with these limitations. The challenges become even greater when clinicians must make rapid critical decisions. As the following case in Zambia illustrates, the Rapid Ethical Decisionmaking Model, long used in emergency medicine, is a useful tool in such circumstances.

In the rationalist tradition in ethics, the emotions are morally suspect. In a corrective swing of the pendulum, burgeoning philosophical interest is “rehabilitating” the emotions in ethical decisionmaking. The emotions and reason should be mutually correcting resources in moral reflection.

When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates (...) physicians and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions. (shrink)

Bioethicists think about families in terms of conflicting interests. This mistake results from an impoverished notion of informed consent. Only by adequately characterizing the process of informed consent can we capture the phenomenon of shared decisionmaking.

:In this paper, the author argues that Joseph Fins’ mosaic decisionmaking model for brain-injured patients is untenable. He supports this claim by identifying three problems with mosaic decisionmaking. First, that it is unclear whether a mosaic is a conceptually adequate metaphor for a decisionmaking process that is intended to promote patient autonomy. Second, that the proposed legal framework for mosaic decisionmaking is inappropriate. Third, that it is unclear how we ought to select patients for participation in (...) mosaic decisionmaking. (shrink)

Some psychiatrists believe that “demoralization syndrome” is a diagnosable cognitive disorder characterized in its extreme form by morbid existential distress. If they are right, then it should be an important part of our thinking about end of life decisionmaking. A demoralized patient would be unable to think reliably about the remainder of her life, and therefore incompetent to decide to commit physician‐assisted suicide.

It is widely thought that genetic counselors should work with parents “nondirectively”: they should keep parents informed and support their decisions. But this view misconceives human decisionmaking by failing to recognize that value choices are constructed within and constrained by a community. Acknowledging that decisions involve interaction with and responsibility toward others leads to a “dialogical” model of counseling, in which genetic counselors may question and guide parents’ decisions.

The principle of respect for autonomy is increasingly under siege as a valuable component of healthcare ethics. Its critics charge that it has been elevated to a position out of proportion to its contribution, so that the individual's wishes and rights have come to dominate healthcare decisionmaking, while obligations and responsibilities are ignored or devalued. If we are to salvage respect for autonomy we must find a way to reconnect the individual and the community, rights and responsibilities, in the (...) way we think about, discuss, and make healthcare decisions. (shrink)

In Pakistan, as in many non‐Western cultures, decisions about a patient's health care are often made by the family or the doctor. For doctors educated in the West, the Pakistani approach requires striking a balance between preserving indigenous values and carving out room for patients to participate in their medical decisions.

The Child Abuse Amendments of 1984 established the norms for treating disabled newborns, but they did not address the treatment of premature babies. Parents and physicians need a framework for decisionmaking. A decision handed down recently by the Texas Supreme Court is a step forward.

Using the right to die and the United States Supreme Court case of Cruzan v. Director, Missouri Department of Health as exemplars, this article explores the notion of third-order decisionmaking. If first order decisionmaking is about what should happen, and second-order decisionmaking is about who should decide what should happen, then third-order decisionmaking is about who should decide who decides. This turns out to be an apt characterization of constitutionalism, which is centrally concerned with the allocation (...) of responsibility for making decisions about the allocation of responsibility. Deference to erroneous second-order decisions, as in the Cruzan case itself, may merely be an example of this central feature of constitutionalism. Keywords: constitutionalism, Cruzan case, right-to-die, rules CiteULike Connotea Del.icio.us What's this? (shrink)

Documenting capacity assessments and identifying substitute decisionmakers in healthcare facilities is ethically required for optimal patient care. Lack of such documentation has the potential to generate confusion and contention among patients, their family members, and members of the healthcare team. An overview of our research at the Ottawa Hospital and issues that influence the consistency of documentation in the Canadian context are presented here, as well as ideas for the mitigation of these issues and ways to encourage better documentation.

The most important issue remains: Whether attorneys should serve on HECs? Will they tend to inhibit the development of other discussions, ethical discussions, regarding the issues brought before the HEC? D. Niemira (17, p. 982) suggests that what a hospital needs is not necessarily an attorney to help in their ethical deliberations, but an ethicist. This suggestion should receive further analysis. What types of ethical deliberations to which attorneys have not been exposed in their legal training are important given the (...) broader attorney-role (beyond giving legal opinion) in HEC discussions?The pro-active attorney faces many challenges, both in the current setting (as cases are brought to the HEC) and as future questions are raised (due to innovations in medical technology). These questions remain unclarified by the courts. The nature of the attorney's role is ever challenging; he or she remains in a key position that is currently needed (regarding the uncharted areas of HEC decisionmaking) and important for the future (as new cases emerge and require extensive deliberations). (shrink)