Moral Distress: What Are We Measuring?

While various definitions of moral distress have been proposed, some agreement exists that it results from illegitimate constraints in clinical practice affecting healthcare professionals' moral agency. If we are to reduce moral distress, instruments measuring it should provide relevant information about such illegitimate constraints. Unfortunately, existing instruments fail to do so. We discuss here several shortcomings of major instruments in use: their inability to determine whether reports of moral distress involve an accurate assessment of the requisite clinical and logistical facts in play, whether the distress in question is aptly characterized as moral, and whether the moral distress reported is an appropriate target of elimination. Such failures seriously limit the ability of empirical work on moral distress to foster appropriate change.

Being and Becoming Pregnant: Valuing Risks.

Pregnant women are insistently urged to limit or eliminate risks to their fetuses. This is done even when the risks to fetuses are only theoretical or minimal, and the health and well-being of the pregnant woman is at stake. When using reproductive and reprogenetic technologies, however, evaluations about what risks are acceptable to impose on embryos change radically. In the context of these technologies, women are not only allowed to impose risks on embryos, but actively encouraged to do so-insofar as they can be urged to use these technologies for various reasons. This article explores the problematic beliefs and social norms regarding motherhood that shape these apparently inconsistent risk evaluations.

Ethics Consultation in Surgical Specialties.

Multiple studies have been performed to identify the most common ethical dilemmas encountered by ethics consultation services. However, limited data exists comparing the content of ethics consultations requested by specific hospital specialties. It remains unclear whether the scope of ethical dilemmas prompting an ethics consultation differ between specialties and if there are types of ethics consultations that are more or less frequently called based on the specialty initiating the ethics consult. This study retrospectively assessed the incidence and content of ethics consultations called by surgical vs. non-surgical specialties between January 1, 2013 to December 31, 2018 using our RedCap Database and information collected through the EMR via our Clinical and Translational Science Center. 548 total ethics consultations were analyzed (surgical n = 135, non-surgical n = 413). Our results demonstrate that more surgical consults originated from the ICU, as opposed to lower acuity units (45.9% vs. 14.3%, p ≤ 0.001), and surgical patients were more likely to have a DNR in place (37.5% vs. 22.2%, p = 0.002). Surgical specialties were more likely to call about issues relating to withholding/withdrawing life-sustaining treatment (p ≤ 0.001), while non-surgical specialties were more likely to call about issues related to discharge planning (p = 0.001). There appear to be morally relevant differences between consults classified as the "same" that are not entirely captured by the usual ethics consultations classification system. In conclusion, this study highlights the unique ethical issues experienced by surgical vs. non-surgical specialties. Ultimately, our data can help ethics consultation services determine how best to educate various hospital specialties to approach ethical issues commonly experienced within their field.

Phases of a Pandemic Surge: The Experience of an Ethics Service in New York City during COVID-19.

When the COVID-19 surge hit New York City hospitals, the Division of Medical Ethics at Weill Cornell Medical College, and our affiliated ethics consultation services, faced waves of ethical issues sweeping forward with intensity and urgency. In this article, we describe our experience over an eight-week period (16 March through 10 May 2020), and describe three types of services: clinical ethics consultation (CEC); service practice communications/interventions (SPCI); and organizational ethics advisement (OEA). We tell this narrative through the prism of time, describing the evolution of ethical issues and trends as the pandemic unfolded. We delineate three phases: anticipation and preparation, crisis management, and reflection and adjustment. The first phase focused predominantly on ways to address impending resource shortages and to plan for remote ethics consultation, and CECs focused on code status discussions with surrogates. The second phase was characterized by the dramatic convergence of a rapid increase in the number of critically ill patients, a growing scarcity of resources, and the reassignment/redeployment of staff outside their specialty areas. The third phase was characterized by the recognition that while the worst of the crisis was waning, its medium- and long-term consequences continued to pose immense challenges. We note that there were times during the crisis that serving in the role of clinical ethics consultant created a sense of dis-ease as novel as the coronavirus itself. In retrospect we learned that our activities far exceeded the familiar terrain of clinical ethics consultation and extended into other spheres of organizational life in novel ways that were unanticipated before this pandemic. To that end, we defined and categorized a middle level of ethics consultation, which we have termed service practice communication intervention (SPCI). This is an underappreciated dimension of the work that ethics consult services are capable of in times of crisis. We believe that the pandemic has revealed the many enduring ways that ethics consultation services can more robustly contribute to the ethical life of their institutions moving forward.

We don't need unilateral DNRs: taking informed non-dissent one step further.

Although shared decision-making is a standard in medical care, unilateral decisions through process-based conflict resolution policies have been defended in certain cases. In patients who do not stand to receive proportional clinical benefits, the harms involved in interventions such as cardiopulmonary resuscitation seem to run contrary to the principle of non-maleficence, and provision of such interventions may cause clinicians significant moral distress. However, because the application of these policies involves taking choices out of the domain of shared decision-making, they face important ethical and legal problems, including a recent challenge to their constitutionality. In light of these concerns, we suggest a re-conceptualization of informed non-dissent as an alternative approach in cases where the application of process-based policies is being considered. This clinician-directed communication model still preserves what is valuable in such policies and salvages professional integrity, while minimising ethical and legal challenges.

When patient advocacy organizations meet industry: a novel approach to dealing with financial conflicts of interest.

BACKGROUND: Much like academic-industry partnerships, industry financial support of patient advocacy organizations (PAOs) has become very common in recent years. While financial conflicts of interest (FCOI) between PAOs and industry have received more attention in recent years, robust efforts to mitigate these conflicts are still limited. MAIN BODY: The authors outline the possible benefits and ethical concerns that can result from financial interactions between biomedical companies and PAOs. They argue that the use of novel strategies, such as the creation of a standing ethics committee, could be helpful in managing FCOIs and ensuring the warranted trust of PAO's constituents. Although ethics committees to address FCOIs are common in the academic context, its use by PAOs is still limited. The authors conclude by describing the process of development and implementation of such an ethics committee at the Crohn's & Colitis Foundation. CONCLUSIONS: While collaborations with industry can result in conflicts of interest, PAOs can develop strategies to address those conflicts. One such strategy is the creation of a standing independent ethics committee to guide PAOs on new and/or existing programs and protocols as they pertain to their industry relationships.

The commercialization of the biomedical sciences: (mis)understanding bias.

The growing commercialization of scientific research has raised important concerns about industry bias. According to some evidence, so-called industry bias can affect the integrity of the science as well as the direction of the research agenda. I argue that conceptualizing industry's influence in scientific research in terms of bias is unhelpful. Insofar as industry sponsorship negatively affects the integrity of the research, it does so through biasing mechanisms that can affect any research independently of the source of funding. Talk about industry bias thus offers no insight into the particular epistemic shortcomings at stake. If the concern is with the negative effects that industry funding can have on the research agenda, conceptualizing this influence as bias obscures the ways in which such impact is problematic and limits our ability to offer solutions that can successfully address the concerns raised by the growing role of private funding in science.

A liver for a kidney: Ethics of trans-organ paired exchange.

Living donation provides important access to organ transplantation, which is the optimal therapy for patients with end-stage liver or kidney failure. Paired exchanges have facilitated thousands of kidney transplants and enable transplantation when the donor and recipient are incompatible. However, frequently willing and otherwise healthy donors have contraindications to the donation of the organ that their recipient needs. Trans-organ paired exchanges would enable a donor associated with a kidney recipient to donate a lobe of liver and a donor associated with a liver recipient to donate a kidney. This article explores some of the ethical concerns that trans-organ exchange might encounter including unbalanced donor risks, the validity of informed consent, and effects on deceased organ donation.

Once you're choosing, nobody's perfect: is more information necessarily better in oocyte donor selection?

Despite a growing body of research examining the psychosocial issues involved in oocyte donation, few studies have examined the role of information in the process of donor selection. The aim of this interview-based qualitative study was to understand how donor oocyte recipients relate to information provided about potential oocyte donors, how they use this information to select donors and their preferences for, and reactions to, various types of information provided to them. Donor oocyte recipients who underwent treatment between 1995 and 2011 were recruited for participation from an academic centre for reproductive medicine. Twenty-two oocyte donor recipients participated. Findings indicate that recipients use information to select donors who they believe would enable them to fulfill their priorities: having a healthy child and 'passing' as genetically related. Obtaining more specific information prompted a focus on donor imperfections and presented a burden of choosing. Moreover, for participants preferring distance, having more information created dilemmas by making the donors less abstract. Although more information and options are often desired by oocyte donor recipients, increased choice can also present psychological dilemmas and emotional costs. Further research is needed to investigate the influence of information-related conflicts on patient decision-making, post-treatment emotional adjustment and disclosure decisions.

Moral bioenhancement: much ado about nothing?

Recently, some have proposed moral bioenhancement as a solution to the serious moral evils that humans face. Seemingly disillusioned with traditional methods of moral education, proponents of bioenhancement believe that we should pursue and apply biotechnological means to morally enhance human beings. Such proposal has generated a lively debate about the permissibility of moral bioenhancement. We argue here that such debate is specious. The claim that moral bioenhancement is a solution - whether permissible or not - to the serious moral problems that affect human beings is based on several problematic framing assumptions. We evaluate here three of such assumptions: the first rests on a contested understanding of morality, the second consist in a mistaken conception of human moral problems, and the third relates to problematic presuppositions grounding the interpretation of existent scientific evidence presented to defend moral bioenhancement. Once these framing assumptions are identified and critically evaluated, it becomes clear that the moral bioenhancement debate is misguided.

The ethics of anonymous gamete donation: is there a right to know one's genetic origins?

A growing number of jurisdictions hold that gamete donors must be identifiable to the children born with their eggs or sperm, on grounds that being able to know about one's genetic origins is a fundamental moral right. But the argument for that belief has not yet been adequately made.

Biobanking Legislation in Spain: Advancing or Undermining Its Ethical Values?

Biobanks are important resources for improving public health and individual care. Some legal frameworks can be more or less conducive to advancing the potential benefits of biobanks. The purpose of this article is to assess biobanking legislation and practices in Spain to determine how well they fare in such a regard. We focus here on some of the primary ethical values that ground relevant legislation and that we believe are consistent with promoting biobanking benefits: the value of scientific research; efficient use of scarce resources; and respect for the dignity of donors. We argue that although Spanish regulations advance these values in important ways, they also have provisions that undermine them and thus risk limiting the potential benefits of biobanks. We offer some suggestions for improvement.

Sex selection and the procreative liberty framework.

The practice of sex selection for social reasons has raised serious criticism. Advocates of this practice, however, insist that objections to it are unfounded and that legal bans are ethically unjustified. Usually, proponents use a rights-based liberal approach as the framework to evaluate this practice. Under this framework, reproductive choice is a basic freedom and interference with individuals' autonomous reproductive choices is illegitimate, unless their actions are shown to seriously harm others. As persuasive as this framework might be in relation to many aspects of reproduction, I argue that it is inappropriate when dealing with sex selection for social purposes.

Patenting and the gender gap: should women be encouraged to patent more?

The commercialization of academic science has come to be understood as economically desirable for institutions, individual researchers, and the public. Not surprisingly, commercial activity, particularly that which results from patenting, appears to be producing changes in the standards used to evaluate scientists' performance and contributions. In this context, concerns about a gender gap in patenting activity have arisen and some have argued for the need to encourage women to seek more patents. They believe that because academic advancement is mainly dependent on productivity (Stuart and Ding in American Journal of Sociology 112:97-144, 2006; Azoulay et al. in Journal of Economic Behavior & Organization 63:599-623, 2007), differences in research output have the power to negatively impact women's careers. Moreover, in the case of patenting activity, they claim that the gender gap also has the potential to negatively affect society. This is so because scientific and technological advancement and innovation play a crucial role in contemporary societies. Thus, women's more limited involvement in the commercialization of science and technology can also be detrimental to innovation itself. Nevertheless, calls to encourage women to patent on grounds that such activity is likely to play a significant role in the betterment of both women's careers and society seem to be based on two problematic assumptions: (1) that the methods to determine women's productivity in patenting activities are an appropriate way to measure their research efforts and the impact of their work, and (2) that patenting, particularly in academia, benefits society. The purpose of this paper is to call into question these two assumptions.

Disclosing Conflicts of Interest to Potential Research Participants: Good for Nothing?

The growing commercialization of science has raised concerns about financial conflicts of interest (COIs). Evidence suggests that such conflicts threaten the integrity of research and the well-being of research participants. Trying to minimize these negative effects, federal agencies, academic institutions, and publishers have developed conflict-of-interest policies. Among such policies, recommendations or requirements to disclose financial COIs to potential research participants and patients have become commonplace. Here, I argue that disclosing conflicts of interest to potential research participants fails to achieve the weighty moral goals that presumably ground such policies. This is so either because disclosure is simply a wrong means for achieving some of the goals in question or because, although disclosure could be an appropriate means for some of those goals, the way in which it is implemented prevents fulfillment of the desirable moral aim.

Interpreting evidence: why values can matter as much as science.

Despite increasing awareness of the ways in which non-epistemic values play roles in science, many scientists remain reluctant to acknowledge values at stake in their own work. Even when research clearly relates to risk assessment and establishing public policy, contexts in which the presence of values is less likely to be contentious, scientists tend to present such research as merely involving empirical questions about what the evidence is. As a result, debates over policy-related science tend to be framed as purely epistemic debates over the state of the evidence. We argue that this neglects the important ways that ethical and social values play legitimate roles in judgments about what we take to be evidence for a particular policy. Using the case of recent disputes about the relative safety of home birth, we argue that although the debate has been framed as a purely scientific one about the empirical evidence for home birth, it actually involves disagreements about underlying value assumptions. If our claims are correct, then in order to move the debate forward, scientists will need to engage in a critical discussion about the values at stake.