Joseph P. DeMarco

Competence and Paternalism

Some bioethicists have argued in favor of a sliding scale notion of competence, paternalistically requiring greater competence in relation to more significant risk. I argue against a sliding scale notion, taking issue with the positions of Allen E. Buchanan and Dan W. Brock, Ian Wilkes, and Joel Feinberg. Rejecting arguments that a sliding scale is supported by legal cases, by ordinary usage, and by fallible judgments about competence, I argue in favor of greater evidence of competence when risk is greater. Two clinical cases are examined, both involving amputation, to show that my fixed concept of competence, with a requirement of clearer evidence of competence when risk is high, better accounts for good moral decisions in bioethics.

Balancing in Ethical Deliberation: Superior to Specification and Casuistry

Approaches to clinical ethics dilemmas that rely on basic principles or rules are difficult to apply because of vagueness and conflict among basic values. In response, casuistry rejects the use of basic values, and specification produces a large set of specified rules that are presumably easily applicable. Balancing is a method employed to weigh the relative importance of different and conflicting values in application. We argue against casuistry and specification, claiming that balancing is superior partly because it most clearly exhibits the reasoning behind moral decision-making. Hence, balancing may be most effective in teaching bioethics to medical professionals.

Deep Brain Stimulation and the Ethics of Protection and Caring for the Patient with Parkinson's Dementia

Deep brain stimulation (DBS) is an effective neurosurgical treatment for patients with advanced Parkinsons disease (PD) suffering from motor complications that are refractory to further medication management. DBS requires an invasive procedure of implanting brain electrodes while awake, followed by implantation of neurostimulators under general anesthesia. The neurostimulator requires battery monitoring and replacement approximately every 3 to 5 years. These two elements of the technology provide numerous decision points about continuing therapies that can involve ethical choices. Although motor function can be improved with subthalamic nucleus (STN) DBS, the long‐term risks of living with implanted hardware should be carefully evaluated for patients with diminishing cognitive capacity. We describe two cases where ethical dilemmas occurred postoperatively as a result of cognitive decline and describe salient ethical dimensions that illustrate the need for a proactive postoperative plan for supervision as a prerequisite for surgery to include neuropsychological testing to predict the likelihood of net benefit to the patient and family beyond just motor improvement.

Rational Noncompliance with Prescribed Medical Treatment

Despite the attention that patient noncompliance has received from medical researchers, patient noncompliance remains poorly understood and difficult to alter. With a better theory of patient noncompliance, both greater success in achieving compliance and greater respect for patient decision making are likely. The theory presented, which uses a microeconomic approach, bridges a gap in the extant literature that has so far ignored the contributions of this classic perspective on decision making involving the tradeoff of costs and benefits. The model also generates a surprising conclusion: that patients are typically acting rationally when they refuse to comply with certain treatments. However, compliance is predicted to rise with increased benefits and reduced costs. The prediction that noncompliance is rational is especially true in chronic conditions at the point that treatment begins to move closer to the medically ideal treatment level. Although the details of this theory have not been tested empirically, it is well supported by existing prospective and retrospective studies.

Is There an Ethical Obligation to Disclose Controversial Risk? A Question From the ACCORD Trial

Researchers designing a clinical trial may be aware of disputed evidence of serious risks from previous studies. These researchers must decide whether and how to describe these risks in their model informed consent document. They have an ethical obligation to provide fully informed consent, but does this obligation include notice of controversial evidence? With ACCORD as an example, we describe a framework and criteria that make clear the conditions requiring inclusion of important controversial risks. The ACCORD model consent document did not include notice of prior trials with excess death. We develop and explain a new standard labeled risk in equipoise. We argue that our approach provides an optimal level of integrity to protect the informational needs of the reasonable volunteers who agree to participate in clinical trials. We suggest language to be used in a model consent document and the informed consent discussion when such controversial evidence exists.

Potential conflict between fundamental ethical principles and requirements of the oncology drug approval process: ethical conflict in drug approval.

DOI 10.1002/cncr.11566

Reviving Brain Death: A Functionalist View

Recently both whole brain death (WBD) and higher brain death (HBD) have come under attack. These attacks, we argue, are successful, leaving supporters of both views without a firm foundation. This state of affairs has been described as “the death of brain death.” Returning to a cardiopulmonary definition presents problems we also find unacceptable. Instead, we attempt to revive brain death by offering a novel and more coherent standard of death based on the permanent cessation of mental processing. This approach works, we claim, by being functionalist instead of being based in biology, consciousness, or personhood. We begin by explaining why an objective biological determination of death fails. We continue by similarly rejecting current arguments offered in support of HBD, which rely on consciousness and/or personhood. In the final section, we explain and defend our functionalist view of death. Our definition centers on mental processing, both conscious and preconscious or unconscious. This view provides the philosophical basis of a functional definition that most accurately reflects the original spirit of brain death when first proposed in the Harvard criteria of 1968.

Coherence and Applied Ethics

In order for a moral theory to support application it must be able to provide determinate answers to actual moral problems or, at the least, to significantly narrow acceptable options. It must also support the development of a genuine consensus, one that is disinterested, reasonable, and unbiased. I argue that theories concentrating on principles, or on rules, or on particular cases fail to meet these standards. A full coherence theory, taking into account principles, rules, practices, and judgments holds the greatest promise for successful application. I present a detailed outline of a full coherence theory that is principled, pluralistic, and comprehensive. This coherence theory includes three basic principles (expressed both negatively and positively), but binds these, in terms of their explication and application, to rules and practices. This theory respects current practices but also directs us to change practices and institutions and even the interpretations of basic moral principles. The theory includes ways to determine which aspect of moral experience should take precedence in given circumstances, ways to determine who has particular obligations, and how--by means of a mutuality principle--value may be enhanced under conditions of value conflict.

Dementia, Advance Directives, and Discontinuity of Personality.

We argue that an advance directive (AD) is not invalidated by personality changes in dementia, as is claimed by Rebecca Dresser. The claim is that a new person results under such personality changes, and that the former person cannot write an AD for the new person. After stating the argument against ADs in cases of dementia, we provide a detailed examination of empirical studies of personality changes in dementia. This evidence, though not strong due mainly to low sample sizes and different notions of personal identity, does not support Dressers position. Given the weakness in the empirical evidence, we turn to a philosophical defense of ADs based on a social contract view supporting the current interests of those writing ADs. Additionally, we argue that personality change is not equivalent to change in personal identity, as would be required by the argument against ADs in cases of dementia.

Palliative Care and Patient Autonomy: Moving Beyond Prohibitions Against Hastening Death

The National Hospice and Palliative Care Organization (NHPCO) upholds policies prohibiting practices that deliberately hasten death. We find these policies overly restrictive and unreasonable. We argue that under specified circumstances it is both reasonable and morally sound to allow for treatments that may deliberately hasten death; these treatments should be part of the NHPCO guidelines. Broadening such policies would be more consistent with the gold standard of bioethical principles, ie, respecting the autonomy of competent adults.