Expanding the Use of Continuous Sedation Until Death and Physician-Assisted Suicide.

The controversy over the equivalence of continuous sedation until death (CSD) and physician-assisted suicide/euthanasia (PAS/E) provides an opportunity to focus on a significant extended use of CSD. This extension, suggested by the equivalence of PAS/E and CSD, is designed to promote additional patient autonomy at the end-of-life. Samuel LiPuma, in his article, "Continuous Sedation Until Death as Physician-Assisted Suicide/Euthanasia: A Conceptual Analysis" claims equivalence between CSD and death; his paper is seminal in the equivalency debate. Critics contend that sedation follows proportionality protocols for which LiPuma's thesis does not adequately account. Furthermore, sedation may not eliminate consciousness, and as such LiPuma's contention that CSD is equivalent to neocortical death is suspect. We not only defend the equivalence thesis, but also expand it to include additional moral considerations. First, we explain the equivalence thesis. This is followed by a defense of the thesis against five criticisms. The third section critiques the current use of CSD. Finally, we offer two proposals that, if adopted, would broaden the use of PAS/E and CSD and thereby expand options at the end-of-life.

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.

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 Dresser's 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.

Clarifying an Expanded Use of Continuous Sedation Until Death: A Reply to the Commentary by McCammon and Piemonte.

Susan D. McCammon and Nicole M. Piemonte offer a thoughtful and thorough commentary on our manuscript entitled "Expanding the use of Continuous Sedation Until Death." In this reply we attempt to clarify and further defend our position. We show how continuous sedation until death is not a "first resort" but rather a legitimate option among many that should available to terminally ill patients whose life expectancy is less than six months. We also attempt to show that we do not equivocate the meaning of palliative care as the commentators suggested. We argue that the traditional notion of palliative care should move beyond relief of "experienced suffering" to relief of potential suffering for those whose life expectancy is less than six months. Lastly, we challenge the commentator's position that the realm of ordinary medicine" should be the guide to care, by showing how the notion of ordinary medicine has been successfully challenged in both bioethical scholarship and the courts in a way that shows ordinary medicine to be an evolving concept rather than a static, universal guide.

Expanding the Use of Continuous Sedation Until Death: Moving Beyond the Last Resort for the Terminally Ill.

As currently practiced, the use of continuous sedation until death (CSD) is controlled by clinicians in a way that may deny patients a key choice in controlling their dying process. Ethical guidelines from the American Medical Association and the American Academy of Pain Medicine describe CSD as a "last resort," and a position statement from the American Academy of Hospice and Palliative Medicine describe it as "an intervention reserved for extreme situations." Accordingly, patients must progress to unremitting pain and suffering and reach a last-resort stage before the option to pursue CSD is considered. Alternatively, we present and defend a new guideline in which decisionally capable, terminally ill patients who have a life expectancy of less than six months may request CSD before being subjected to the refractory suffering of a treatment of "last resort."

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.

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.

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.

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.

An economic theory of patient decision-making.

Patient autonomy, as exercised in the informed consent process, is a central concern in bioethics. The typical bioethicist's analysis of autonomy centers on decisional capacity--finding the line between autonomy and its absence. This approach leaves unexplored the structure of reasoning behind patient treatment decisions. To counter that approach, we present a microeconomic theory of patient decision-making regarding the acceptable level of medical treatment from the patient's perspective. We show that a rational patient's desired treatment level typically departs from the level yielding an absence of symptoms, the level we call ideal. This microeconomic theory demonstrates why patients have good reason not to pursue treatment to the point of absence of physical symptoms. We defend our view against possible objections that it is unrealistic and that it fails to adequately consider harm a patient may suffer by curtailing treatment. Our analysis is fruitful in various ways. It shows why decisions often considered unreasonable might be fully reasonable. It offers a theoretical account of how physician misinformation may adversely affect a patient's decision. It shows how billing costs influence patient decision-making. It indicates that health care professionals' beliefs about the 'unreasonable' attitudes of patients might often be wrong. It provides a better understanding of patient rationality that should help to ensure fuller information as well as increased respect for patient decision-making.