Starting research -- Enrolling research participants -- Protecting research participants -- Conducting research with vulnerable populations -- Balancing clinical research and clinical care -- Navigating interpersonal difficulties -- Ending research.
Costs at the end of life disproportionately contribute to health care costs in the United States. Addressing these costs will therefore be an important component in making the U.S. health care system more financially sustainable. In this paper, we explore the moral justifications for having discussions of end-of-life costs in the doctor-patient encounter as part of an effort to control costs. As health care costs are partly shared through pooled resources, such as insurance and taxation, and partly borne by individuals (...) through out-of-pocket expenses, we separate our defense for, and approach to, discussing both pooled and individual aspects of cost. We argue that there needs to be a shift away from formulating the options as a dichotomous choice of paying attention to end-of-life costs versus ignoring such costs. The question should be how personal costs will be managed and how societal expenditures should be allocated. These are issues that we believe patients care about and need to have addressed in a manner with which they are comfortable. Conversations about how money will be spent at the end of life should begin before the end is near. We propose discussing costs from the onset of chronic illness and incorporating financial issues in advance care planning. Through these approaches one can avoid abruptly and insensitively introducing financial issues at the very conclusion of a person's life when one would prefer to address the painful and important issues of spiritual and existential loss that are appropriately the focus when a person is dying. (shrink)
It is a basic and intuitive assumption that the relation of moral preference must be transitive—if A is overall morally preferable to B; and B is overall morally preferably to C; then, if our views are coherent, it better be the case that A is overall morally preferable to C. However, recent work by Temkin and Rachels has undermined that assumption by showing that common-sense ethical distributive principles that we are unlikely to give up generate intransitive sets of moral preferences. (...) The consequences of this for resource allocation are profound—how can we come up with a just way of rationing limited resources if whatever course of action we adopt, there will be other alternatives that are morally preferable to it? However, regardless of the theoretical challenges, practical resource allocation decisions must be made every day! We explore an approach to dealing with some of the pragmatic aspects of the problem, even though the theoretical problem of intransitivity remains unsolved. We begin by considering whether the ways in which counterexamples to transitivity have (of necessity) been oversimplified actually contribute to the intractability of the problem by taking the possibilities of cost sharing, benefit splitting, and compensation (which are often available in real-life tradeoff situations) off the table. The proposal we end up suggesting does not rely on any assumptions or judgments about interpersonal aggregation, and so has a chance of allowing us to work around the most troubling kind of intransitivity. (shrink)
Gesundheit and colleagues offer dramatic examples of the medical treatment of terrorists but then pose the suggestion that those who engage in terrorism forfeit their right to medical care, and, consequently, that physicians have no obligation to treat them. Their argument presupposes that a physician’s obligation to provide medical care depends on the patients’ right to health care. Therefore, someone who commits heinous and abhorrent acts thereby waives the right to health care and the physicians’ duty to provide health care (...) might consequently be absolved. This view may appeal to physicians who have experienced the complexity and discomfort of treating someone whose morality or even humanity they question, such as a rapist, a serial killer, or a perpetrator of genocide. However we have grounds to believe that the duty of physicians to treat is not based on the moral worth of patients, but rather on the duties that physicians have, and this notion renders any concern about the unacceptability of any person’s behavior irrelevant in determining whether to provide treatment. We will first argue that not all duties are directly derived from rights, and then illustrate how deontological views, along with common views on the role morality of physicians, provide a basis for offering indiscriminate medical care. Second, we will discuss the physician’s role in the context of war, and offer one compelling moral reason on the basis of which warfare norms do indeed obligate physicians to extend their duty to care toward enemies, terrorists included, independently of whatever right they maintain. (shrink)
Purpose/methods: This study investigated the relationship between ethics education and training, and the use and usefulness of ethics resources, confidence in moral decisions, and moral action/activism through a survey of practicing nurses and social workers from four United States (US) census regions. Findings: The sample (n = 1215) was primarily Caucasian (83%), female (85%), well educated (57% with a master's degree). no ethics education at all was reported by 14% of study participants (8% of social workers had no ethics education, (...) versus 23% of nurses), and only 57% of participants had ethics education in their professional educational program. Those with both professional ethics education and in-service or continuing education were more confident in their moral judgments and more likely to use ethics resources and to take moral action. Social workers had more overall education, more ethics education, and higher confidence and moral action scores, and were more likely to use ethics resources than nurses. Conclusion: Ethics education has a significant positive influence on moral confidence, moral action, and use of ethics resources by nurses and social workers. (shrink)
: Although rationing by clinical judgment is controversial, its acceptability partly depends on how it is practiced. In this paper, rationing by clinical judgment is defined in three different circumstances that represent increasingly wider circles of resource pools in which the rationing decision takes place: triage during acute shortage, comparison to other potential patients in a context of limited but not immediately strained resources, and determination of whether expected benefit of an intervention is deemed sufficient to warrant its cost by (...) reference to published population based thresholds. Notions of procedural justice are applied along with an analytical framework of six minimal requisites in order to facilitate fair bedside rationing: (1) a closed system that offers reciprocity, (2) attention to general concerns of justice, (3) respect for individual variations, (4) application of a consistent process, (5) explicitness, and (6) review of decisions. The process could be monitored for its applicability and appropriateness. (shrink)
: Bioethicists have articulated an ideal of shared decision making between physician and patient, but in doing so the role of clinical uncertainty has not been adequately confronted. In the face of uncertainty about the patient's prognosis and the best course of treatment, many physicians revert to a model of nondisclosure and nondiscussion, thus closing off opportunities for shared decision making. Empirical studies suggest that physicians find it more difficult to adhere to norms of disclosure in situations where there is (...) substantial uncertainty. They may be concerned that acknowledging their own uncertainty will undermine patient trust and create additional confusion and anxiety for the patient. We argue, in contrast, that effective disclosure will protect patient trust in the long run and that patients can manage information about uncertainty. In situations where there is substantial uncertainty, extra vigilance is required to ensure that patients are given the tools and information they need to participate in cooperative decision making about their care. (shrink)