A 1999–2000 national study of U.S. hospitals raised concerns about ethics consultation (EC) practices and catalyzed improvement efforts. To assess how practices have changed since 2000, we administered a 105-item survey to “best informants” in a stratified random sample of 600 U.S. general hospitals. This primary article details the methods for the entire study, then focuses on the 16 items from the prior study. Compared with 2000, the estimated number of case consultations performed annually rose by 94% to 68,000. The (...) median number of consults per hospital was unchanged at 3, but more than doubled for hospitals with 400+ beds. The level of education of EC practitioners was unchanged, while the percentage of hospitals formally evaluating their ECS decreased from 28.0% to 19.1%. The gap between large, teaching hospitals and small, nonteaching hospitals widened since the prior study. We suggest targeting future improvement efforts to hospitals where needs are not being met by current approaches to EC. (shrink)

To design effective strategies to improve ethics consultation (EC) practices, it is important to understand the views of ethics practitioners. Previous U.S. studies of ethics practitioners have overrepresented the views of academic bioethicists. To help inform EC improvement efforts, we surveyed a random stratified sample of U.S. hospitals, examining ethics practitioners’ opinions on EC in general, on their own EC service, on strategies to improve EC, and on ASBH practice standards. Respondents across all categories of hospitals had very positive perceptions (...) of their own ethics consultation service (ECS) and few concerns about quality. Our findings suggest that the ethics-related needs of small, rural, non-teaching hospitals may be very different from those of academic medical centers, and therefore, different approaches to addressing ethical issues might be warranted. (shrink)

BackgroundWhile previous research has examined various aspects of ethics consultation (EC) in U.S. hospitals, certain EC practices have never been systematically studied.MethodsTo address this gap, we surveyed a random stratified sample of 600 hospitals about aspects of EC that had not been previously explored.ResultsNew findings include: in 26.0% of hospitals, the EC service performs EC for more than one hospital; 72.4% of hospitals performed at least one non-case consultation; in 56% of hospitals, ECs are never requested by patients or families; (...) 59.0% of case consultations involve conflict; the usual practice is to visit the patient in all formal EC cases in 32.5% of hospitals; 56.6% of hospitals do not include a formal meeting in most EC cases; 61.1% of hospitals do not routinely assess ethics consultants’ competencies; and 31.6% of hospitals belong to a bioethics network. We estimate the total number of non-case consultations performed in U.S. hospitals to be approximately one half the number of case consultations; we estimate the total number of ECs performed in U.S. hospitals, including both case and non-case consultations, to be just over 100,000 per year.ConclusionsThese findings expand our current understanding of EC in U.S. hospitals, and raise several concerns that suggest a need for further research. (shrink)

The problems of racism and racially motivated violence in predominantly African American communities in the United States are complex, multifactorial, and historically rooted. While these problems are also deeply morally troubling, bioethicists have not contributed substantially to addressing them. Concern for justice has been one of the core commitments of bioethics. For this and other reasons, bioethicists should contribute to addressing these problems. We consider how bioethicists can offer meaningful contributions to the public discourse, research, teaching, training, policy development, and (...) academic scholarship in response to the alarming and persistent patterns of racism and implicit biases associated with it. To make any useful contribution, bioethicists will require preparation and should expect to play a significant role through collaborative action with others. (shrink)

Intersectionality has become a significant intellectual approach for those thinking about the ways that race, gender, and other social identities converge in order to create unique forms of oppression. Although the initial work on intersectionality addressed the unique position of black women relative to both black men and white women, the concept has since been expanded to address a range of social identities. Here we consider how to apply some of the theoretical tools provided by intersectionality to the clinical context. (...) We begin with a brief discussion of intersectionality and how it might be useful in a clinical context. We then discuss two clinical scenarios that highlight how we think considering intersectionality could lead to more successful patient–clinician interactions. Finally, we extrapolate general strategies for applying intersectionality to the clinical context before considering objections and replies. (shrink)

Clinical ethics consultation is largely outside the scope of regulation and oversight, despite its importance. For decades, the bioethics community has been unable to reach a consensus on whether there should be accountability in this work, as there is for other clinical activities that influence the care of patients. The American Society for Bioethics and Humanities, the primary society of bioethicists and scholars in the medical humanities and the organizational home for individuals who perform CEC in the United States, has (...) initiated a two‐step quality attestation process as a means to assess clinical ethics consultants and help identify individuals who are qualified to perform this role. This article describes the process. (shrink)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step (...) on the pathway to an eventual certification process for clinical ethics consultants. (shrink)

Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants described 219 unique ethical experiences that spanned many of (...) the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. Participants focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. These data indicate areas for improvement for healthcare providers but some concerns may be better addressed outside of the traditional healthcare setting. (shrink)

BackgroundAdherence to widely accepted practice standards is a frequently used measure of healthcare quality. In the U.S., the most widely recognized authoritative source of practice standards for ethics consultation (EC) is the second edition of the American Society for Bioethics and Humanities’ Core Competencies for Healthcare Ethics Consultation report.MethodsTo determine the extent to which EC practices in U.S. hospitals adhere to these practice standards, we developed and analyzed 12 evaluative measures from a national survey.ResultsOnly three of the 12 standards achieved (...) over 75% adherence with reported EC practices: allowing anyone involved in a case to request an EC (100%), not requiring an attending physician’s permission to conduct an EC (97.6%), and having at least one person on the ethics consultation service (ECS) with advanced level EC proficiency (79.3%).ConclusionsImplications are discussed for achieving consensus on EC standards as they continue to evolve. (shrink)

The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards, to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to (...) highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research. (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)

BackgroundAs hospitals have grown more complex, the ethical concerns they confront have grown correspondingly complicated. Many hospitals have consequently developed health care ethics programs (HCEPs) that include far more than ethics consultation services alone. Yet systematic research on these programs is lacking.MethodsBased on a national, cross-sectional survey of a stratified sample of 600 US hospitals, we report on the prevalence, scope, activities, staffing, workload, financial compensation, and greatest challenges facing HCEPs.ResultsAmong 372 hospitals whose informants responded to an online survey, 97% (...) of hospitals have HCEPs. Their scope includes clinical ethics functions in virtually all hospitals, but includes other functions in far fewer hospitals: ethical leadership (35.7%), regulatory compliance (29.0%), business ethics (26.2%), and research ethics (12.6%). HCEPs are responsible for providing ongoing ethics education to various target audiences including all staff (77.0%), nurses (59.9%), staff physicians (49.0%), hospital leadership (44.2%), medical residents (20.3%) and the community/general public (18.4%). HCEPs staff are most commonly involved in policy work through review of existing policies but are less often involved in development of new policies. HCEPs have an ethics representative in executive leadership in 80.5% of hospitals, have representation on other hospital committees in 40.7%, are actively engaged in community outreach in 22.6%, and lead large-scale ethics quality improvement initiatives in 17.7%. In general, major teaching hospitals and urban hospitals have the most highly integrated ethics programs with the broadest scope and greatest number of activities. Larger hospitals, academically affiliated hospitals, and urban hospitals have significantly more individuals performing HCEP work and significantly more individuals receiving financial compensation specifically for that work. Overall, the most common greatest challenge facing HCEPs is resource shortages, whereas underutilization is the most common greatest challenge for hospitals with fewer than 100 beds. Respondents’ strategies for managing challenges include staff training and additional funds.ConclusionsWhile this study must be cautiously interpreted due to its limitations, the findings may be useful for understanding the characteristics of HCEPs in US hospitals and the factors associated with these characteristics. This information may contribute to exploring ways to strengthen HCEPs. (shrink)

Clinical ethics support services are developing in Europe. They will be most useful if they are designed to match the ethical concerns of clinicians. We conducted a cross-sectional mailed survey on random samples of general physicians in Norway, Switzerland, Italy, and the UK, to assess their access to different types of ethics support services, and to describe what makes them more likely to have used available ethics support. Respondents reported access to formal ethics support services such as clinical ethics committees (...) (23%), consultation in individual cases (17.6%), and individual ethicists (8.8%), but also to other kinds of less formal ethics support (23.6%). Access to formal ethics support services was associated with work in urban hospitals. Informal ethics resources were more evenly distributed. Although most respondents (81%) reported that they would find help useful in facing ethical difficulties, they reported having used the available services infrequently (14%). Physicians with greater confidence in their knowledge of ethics (P = 0.001), or who had had ethics courses in medical school (P = 0.006), were more likely to have used available services. Access to help in facing ethical difficulties among general physicians in the surveyed countries is provided by a mix of official ethics support services and other resources. Developing ethics support services may benefit from integration of informal services. Development of ethics education in medical school curricula could lead to improved physicians sensititity to ethical difficulties and greater use of ethics support services. Such support services may also need to be more proactive in making their help available. (shrink)

Ethical dilemmas are part of medicine, but the type of challenges, the frequency of their occurrence and the nuances in the difficulties have not been systematically studied in low-income settings. The objective of this paper was to map out the ethical dilemmas from the perspective of Ethiopian physicians working in public hospitals. A national survey of physicians from 49 public hospitals using stratified, multi-stage sampling was conducted in six of the 11 regions in Ethiopia. Descriptive statistics were used and the (...) responses to the open-ended question “If you have experienced any ethical dilemma, can you please describe a dilemma you have encountered in your own words?” were analyzed using a template analysis process. A total of 587 physicians responded, and 565 met the inclusion criteria. Twelve of 24 specified ethically challenging situations were reported to be experienced often or sometimes by more than 50% of the physicians. The most frequently reported challenge concerned resource distribution: 93% agreed that they often or sometimes had to make difficult choices due to resource limitation, and 83% often or sometimes encountered difficulties because patients were unable to pay for the preferred course of treatment. Other frequently reported difficulties were doubts about doing good or harming the patient, relating to conflicting views, concern for family welfare, disclosure issues and caring for patients not able to consent. Few reported dilemmas related to end-of-life issues. The 200 responses to the open-ended question mirrored the quantitative results. Ethiopian physicians report ethical challenges related more to bedside rationing and fairness concerns than futility discussions and conflicts about autonomy as described in studies from high-income countries. In addition to the high report of experienced challenges, gravity of the dilemmas that are present in their narratives are striking. Recognition of the everyday experiences of physicians in low-income settings should prompt the development of ethics teaching and support mechanisms, discussion of ethical guidelines as well as increase our focus on how to improve the grave resource scarcity they describe. (shrink)

Background Little is known about communication between patients, families, and healthcare providers regarding ethical concerns that patients and families experience in the course of illness and medical care. To address this gap in the literature, we surveyed patients and family members to learn about their ethical concerns and the extent to which they discussed them with their healthcare providers. Methods We surveyed adult, English-speaking patients and family members receiving inpatient care in five hospitals in the Washington DC-Baltimore metropolitan area from (...) July 2017 to March 2020. Descriptive statistics were used to determine the frequency, comfortableness, and helpfulness of discussions regarding ethical concerns experienced when sick or receiving medical care. Univariable and multivariable stepwise logistic regression models were used to identify associations between healthcare provider and respondent characteristics and attitudes and (1) the likelihood of speaking to a healthcare provider about their ethical concern and (2) their level of comfort during these discussions. Results Of 468 respondents who experienced ethical issues, 299 (64%) reported discussing the situation with a member of their healthcare team; 74% (197/265) of respondents who had such a discussion found the discussion comfortable, and 77% (176/230) of respondents found the discussion helpful. To make discussions more comfortable and helpful, respondents proposed suggestions in open-ended responses involving (1) content and quality of communication; (2) positive healthcare provider qualities such as empathy, open-mindedness, knowledge, honesty, and trustworthiness; and (3) other contextual factors including having adequate time and available resources. Conclusions Patients and families often have ethical concerns that they discuss with clinicians, and they want clinicians to be routinely receptive and attentive to such discussions. (shrink)

Events in the US in 2020 have laid bare the reality that racism and its effects continue to take a heavy toll on the lives of Black Americans. The three articles in this issue of AJOB each provide...

Several quantitative surveys have been conducted internationally to gather empirical information about physicians’ general attitudes towards health care rationing. Are physicians ready to accept and implement rationing, or are they rather reluctant? Do they prefer implicit bedside rationing that allows the physician–patient relationship broad leeway in individual decisions? Or do physicians prefer strategies that apply explicit criteria and rules?

BackgroundTo help inform the development of more accessible, acceptable, and effective ethics consultation (EC) training programs, we conducted an EC training needs assessment, exploring ethics practitioners’ opinions on: the relative importance of various EC practitioner competencies; the potential market for EC training (that is, how many individuals would benefit and how much individuals and hospitals would be willing to pay); and the preferred content, format, and characteristics of EC training.MethodsAs part of a multipart study, we surveyed “best informants” who self-identified (...) as the person most actively involved in EC or healthcare ethics in a random sample of 600 U.S. general hospitals, stratified for bed size.ResultsThe competency that was ranked most important for a lead or solo ethics consultant was knowledge of ethics, while common sense was ranked least important. The median estimated number of individuals at each hospital who would benefit from EC training was six at the basic level, three at the advanced level, and two for EC management training. In 19.1 percent of hospitals, respondents thought their hospital would not be willing to pay anything for EC training within the next two years. Respondents thought potential trainees would be likely to participate in EC training on multiple different topics. Opinions varied widely on preferred formats. Most respondents thought it very important to be able to interact with instructors and with other trainees, practice EC skills, receive a certificate for completing EC training, and complete EC training during work hours.ConclusionsThese findings provide U.S. population data that may be useful to healthcare educators and bioethics leaders in their efforts to develop EC training programs and products that match trainees’ preferences and needs. (shrink)

The recent Ebola outbreak in West Africa began in the spring of 2014 and has since caused the deaths of over 6,000 people. Since there are no approved treatments or prevention modalities specifically targeted at Ebola Virus Disease , debate has focused on whether unproven interventions should be offered to Ebola patients outside of clinical trials. Those engaged in the debate have responded rapidly to a complex and evolving crisis, however, and this debate has not provided much opportunity for in-depth (...) analysis. Additionally, the existing literature on access to unproven therapies has focused on contexts like HIV/AIDS and oncology, which are very different than the Ebola epidemic. In this paper, we examine the ethical issues surrounding access to unproven therapies in the context of the recent Ebola outbreak to yield new insights about this controversial and unsettled issue. We argue first that, in this context, the interests of patients in obtaining access to unproven therapies are not fully aligned.. (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)

The field of clinical ethics consultation has matured into a multidisciplinary profession, with clinical ethics consultants (CECs) being trained in bioethics, philosophy, theology, law, medicine, n...

Home care is one of the fastest‐growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good care involves attending to the needs (...) of another out of a concern for their well‐being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care.. (shrink)

Patients and family members (N = 671) were surveyed in five Mid-Atlantic U.S. hospitals to ascertain the number and kinds of ethical concerns they are presently experiencing or have previously experienced while being sick or receiving medical care. Seventy percent of participants had at least one (range 0–14) type of ethical concern or question. The most commonly experienced concerns pertained to being unsure how to plan ahead or complete an advance directive (29.4%), being unsure whether someone in the family was (...) able to make their own decisions (29.2%), deciding about limiting life-sustaining treatments (28.6%), wondering about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%). Most were interested to some degree in getting help from ethics consultants in the future (76.6%). Given this prevalence, common concerns might usefully be addressed systematically, rather than exclusively on a case-by-case basis. (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)

Imperfect efficiency in healthcare delivery is sometimes given as a justification for refusing to ration or even discuss how to pursue fair rationing. This paper aims to clarify the relationship between inefficiency and rationing, and the conditions under which bedside rationing can be justified despite coexisting inefficiency. This paper first clarifies several assumptions that underlie the classification of a clinical practice as being inefficient. We then suggest that rationing is difficult to justify in circumstances where the rationing agent is or (...) should be aware of and contributes to clinical inefficiency. We further explain the different ethical implications of this suggestion for rationing decisions made by clinicians. We argue that rationing is more legitimate when sufficient efforts are undertaken to decrease inefficiency in parallel with efforts to pursue unavoidable but fair rationing. While the qualifier ‘sufficient’ is crucial here, we explain why ‘sufficient efforts’ should be translated into ‘benchmarks of efficiency’ that address specific healthcare activities where clinical inefficiency can be decreased. Referring to recent consensus papers, we consider some examples of specific clinical situations where improving clinical inefficiency has been recommended and consider how benchmarks for efficiency might apply. These benchmarks should state explicitly how much inefficiency shall be reduced in a reasonable time range and why these efforts are ‘sufficient’. Possible strategies for adherence to benchmarks are offered to address the possibility of non-compliance. (shrink)

Political philosophers often formulate the problem of distributive justice as the problem of how the government ought to distribute different types of goods—for example, income or health care—to its citizens. They therefore presuppose that the government is a unitary agent that governs its citizens directly. However, although a number of governments are unitary in this way, many are federations, exhibiting a division of sovereignty between two or more levels of government having independent grounds of authority. In contrast to unitary states, (...) therefore, within a federation, two or more levels of government directly govern their citizens and are directly accountable to them. Because of the way in which different levels of government in a federation can separately affect the distribution of goods in society, federations face resource allocation problems that are far more complex than those of unitary states. In addition to determining what a just distribution of goods is, federations must also determine (1) whether distributive justice is a shared responsibility amongst different levels of government, and, if so, (2) how this shared responsibility should be allocated between them. (shrink)

Mounting evidence suggests that socioeconomic status is a determinant of health. As nations around the globe increasingly rely on market-based economies, the corporate sector has come to have a powerful influence on the socioeconomic gradient in most nations and hence upon the health status of their populations. At the same time, it has become more difficult for any one nation to influence corporate activities, given the increasing ease with which corporations relocate their operations from country to country, As a result (...) of all of these factors, nations wishing to assure the health of their populations will need to both involve the corporate sector and cooperate with other nations.In this article, we review the business ethics literature and consider what justification it might provide for requiring multinational corporations to attend to concerns about population health. (shrink)

When health care providers make decisions to use resources, their devotion to the patient at hand must be mediated by a framework that puts individual autonomy and social equity into focus simultaneously. The concept of citizenship yields such a framework.

BackgroundReports suggest that some health care personnel fear retaliation from seeking ethics consultation. We therefore examined the prevalence and determinants of fear of retaliation and determined whether this fear is associated with diminished likelihood of consulting an ethics committee.MethodsWe surveyed registered nurses (RNs) and social workers (SWs) in four US states to identify ethical problems they encounter. We developed a retaliation index (1–7 point range) with higher scores indicating a higher perceived likelihood of retaliation. Linear regression analysis was performed to (...) identify socio-demographic and job characteristics associated with fear of retaliation. Logistic regression analysis was performed to determine whether fear of retaliation was associated with less likelihood of seeking consultation. Results Our sample (N = 1215) was primarily female (85%) and Caucasian (83%) with a mean age of 46 years and 17 years of practice. Among the sample, 293 (48.7%) RNs and 309 (51.3%) SWs reported access to an ethics consultation service. Amongst those with access, 2.8% (n = 17) personally experienced retaliation, 9.1% (n = 55) observed colleagues experience retaliation, 30.2% (n = 182) reported no experience with retaliation but considered it a realistic fear, and 50.8% (n = 305) did not perceive retaliation to be a problem. In logistic regression modeling, fear of retaliation was not associated with the likelihood (OR = 0.64; 95% CI = 0.22–1.89) or frequency of requesting ethics consultation (OR = 0.81; 95% CI = 0.27–2.38). Conclusion Fear of retaliation from seeking ethics consultation is common among nurses and social workers, nonetheless this fear is not associated with reduced requests for ethics consultation. (shrink)

Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients’ confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical (...) analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement. (shrink)

Most theories of parenthood assume, at least implicitly, that a child will grow up to be an independent, autonomous adult. However, some children with cognitive limitations or psychiatric illness are unable to do so. For this reason, these accounts do not accommodate the circumstances and responsibilities of parents of such adult children. Our article attempts to correct this deficiency. In particular, we describe some of the common characteristics and experiences of this population of parents and children, examine the unique aspects (...) of their relationships, review several philosophical accounts of parental obligations, consider how these accounts might be extrapolated to semiautonomous adult children, and provide suggestions about parental obligations to promote autonomy and independence in adult children with cognitive limitations or psychiatric illness. In extending accounts of parental responsibilities to the case of semiautonomous adults, we find that the parental role includes the duty to continue to provide care—indefinitely if necessary—while cultivating autonomy and independence. (shrink)

One of the most striking findings of the study by Foglia and colleagues (2009) was that clinicians and managers were most concerned with limited resources while ethics committee chairpersons focuse...

Hundreds of millions of rare biospecimens are stored in laboratories and biobanks around the world. Often, the researchers who possess these specimens do not plan to use them, while other researchers limit the scope of their work because they cannot acquire biospecimens that meet their needs. This situation raises an important and underexplored question: how should scientists allocate biospecimens that they do not intend to use? We argue that allocators should aim to maximise the social value of the research enterprise (...) when allocating scarce biospecimens. We provide an ethical framework for assessing the social value of proposed research projects and describe how the framework could be implemented. (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)

ABSTRACT:Assumptions that bioethics was intended to focus only on a narrow set of issues related to research and health care are mistaken. The field of bioethics has long been focused on pressing contemporary issues, and it will play an unduly peripheral and less significant role than it could otherwise if it fails to focus on a broad set of issues, including human relations and the relationship of humans to nonhuman beings and the environment—and if it does not consider how to (...) engage with others in addressing these issues. Bioethicists' traditional approaches, which emphasize an analytical role regarding values and goals, are important, but bioethicists also must include stakeholders in deliberations and consider how to translate goals into policy and practice. (shrink)

Starting research -- Enrolling research participants -- Protecting research participants -- Conducting research with vulnerable populations -- Balancing clinical research and clinical care -- Navigating interpersonal difficulties -- Ending research.

This brief essay describes the purpose, the content, and the development, by a group of Hastings Center fellows and a scholar at the Center, of the Hastings Center Bioethics Timeline. The timeline covers the wide range of contemporary events pertaining to the intersection of bioethics with the medical and biological sciences, health care, and health policy, as well as the medical arts and medical humanities. A collaborative effort that documents events in a collaborative field, the timeline is meant to be (...) updated and edited so that it improves over time. (shrink)

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)

The cost of health care at the end of life accounts for a high proportion of total health care costs in the United States. The percentage of Medicare payments attributable to patients in their last year of life was 28.3% in 1978 and has remained substantially the same at 25.1% in 2006. This indicates how little progress has been made in containing these costs, though doing so will be important to promote a financially sustainable health care system. These expenditures also (...) highlight the prospect that efforts to reduce health care costs overall are likely to disproportionately affect the care patients receive at the end of life. (shrink)