On the traditional view, moral distress arises only in cases where an individual believes she knows the morally right thing to do but fails to perform that action due to various constraints. We seek to motivate a broader understanding of moral distress. We begin by presenting six types of distress that fall outside the bounds of the traditional definition and explaining why they should be recognized as forms of moral distress. We then propose and defend a new and more expansive (...) definition of moral distress and examine how it can enable the development of a taxonomy of moral distress. (shrink)

The Covid‐19 pandemic has highlighted many of the difficult ethical issues that health care professionals confront in caring for patients and families. The decisions such workers face on the front lines are fraught with uncertainty for all stakeholders. Our focus is on the implications for nurses, who are the largest global health care workforce but whose perspectives are not always fully considered. This essay discusses three overarching ethical issues that create a myriad of concerns and will likely affect nurses globally (...) in unique ways: the safety of nurses, patients, colleagues, and families; the allocation of scarce resources; and the changing nature of nurses’ relationships with patients and families. We urge policy‐makers to ensure that nurses’ voices and perspectives are integrated into both local and global decision‐making so as to minimize the structural injustices many nurses have faced to date. Finally, we urge nurses to seek sources of support throughout this pandemic. (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)

Background The COVID-19 pandemic continues to disrupt every society as SARs-CoV-2 variants surge among the populations. Health care providers are exhausted, becoming ill themselves, and in some instances have died. Indeed, hospitals are struggling to find staff to care for critically ill patients most in need. Previous work has reported on the unending work-related conditions that hospital staff are laboring under and their subsequent mental and physical health strains. Health care providers need support, but it is not clear where that (...) support is to come from. While much research has reported on the COVID-19-related fears of nurses and physicians, fewer studies have focused on supportive features of the hospital work environment and how it may provide relief to front-line health care providers.Purpose This purpose of this study was to explore an often-overlooked resource within hospital systems across the United States—clinical ethicists—and examine their many roles during COVID-19 and the types of ethical issues they addressed with nurses, physicians, administrators, and others.Methods This was a primary analysis of semi-structured, qualitative interviews with 23 clinical ethicists across the United States. The interviews were conducted from November 2020–April 2021 and were audiotaped, transcribed verbatim, and de-identified; both inductive and deductive analyses were used to identify qualitative themes.Results Five major themes were identified: ethical issues that were increasingly more complex, moral distress that was “endemic,” shifting ethical paradigms from the focus on the individual to the population, fostering a supportive environment, and organizational ethics: variation in the value, roles, and policy input of clinical ethicists.Conclusions Our findings report on the integral and expanded role of clinical ethicists at an unprecedented time in our nation, and how they stepped forward to support front-line clinicians in hospitals across the country. (shrink)

Moral distress is indeed distressing for those who experience it and whose sense of integrity can be shaken by exposure to events or situations that test their core values and ethical belief system...

Importance Informed consent is essential to ethical, rigorous research and is important to recruitment and retention in cancer trials.Objective To examine cancer clinical trial (CCT) participants’ perceptions of informed consent processes and variations in perceptions by cancer type.Design and Setting and Participants Cross-sectional survey from mixed-methods study at National Cancer Institute–designated Northeast comprehensive cancer center. Open-ended and forced-choice items addressed: (1) enrollment and informed consent experiences and (2) decision-making processes, including risk-benefit assessment. Eligibility: CCT participant with gastro-intestinal or genitourinary, hematologic-lymphatic (...) malignancies, lung cancer, and breast or gynecological cancer (N = 334).Main Outcome Measures Percentages satisfied with consent process and information provided; and assessing participation’s perceptions of risks/benefits. Multivariable logistic or ordinal regression examined differences by cancer type.Results Most patient-participants felt well informed by the consent process (more than 90% overall and by cancer type) and. most (87.4%) reported that the consent form provided all the information they wanted, although nearly half (44.8%) reported that they read the form somewhat carefully or less. More than half (57.9%) said that talking to research staff (i.e., the consent process) had a greater impact on participation decisions than reading the consent form (2.1%). A third (31.1%) were very sure of joining in research studies before the informed consent process (almost half of lung cancer patients did—47.1%). Most patients personally assessed the risks and benefits before consenting. However, trust in physicians played an important role in the decision to enroll in CCT.Conclusions and Relevance Cancer patients rely less on written features of the informed consent process than on information obtained from the research staff and their own physicians. Research should focus on information and communication strategies that support informed consent from referring physicians, researchers, and others to improve patient risk-benefit assessment and decision-making. (shrink)

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both (...) explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. (shrink)

Background: Collaboration between physicians and nurses is key to improving patient care. We know very little about collaboration and interdisciplinary practice in African healthcare settings. Research question/aim: The purpose of this study was to explore the ethical challenges of interdisciplinary collaboration in clinical practice and education in Botswana Participants and research context: This qualitative descriptive study was conducted with 39 participants (20 physicians and 19 nurses) who participated in semi-structured interviews at public hospitals purposely selected to represent the three levels (...) of hospitals in Botswana (referral, district, and primary). Ethical considerations: Following Institutional Review Board Approval at the University of Pennsylvania and the Ministry of Health in Botswana, participants’ written informed consent was obtained. Findings: Respondents’ ages ranged from 23 to 60 years, and their duration of work experience ranged from 0.5 to 32 years. Major qualitative themes that emerged from the data centered on the nature of the work environment, values regarding nurse–doctor collaboration, the nature of such collaboration, resources available for supporting collaboration and the smooth flow of work, and participants’ views about how their work experiences could be improved. Discussion: Participants expressed concerns that their work environment compromised their ability to provide high-quality and safe care to their patients. The physician staffing structure was described as consisting of a few specialists at the top, a vacuum in the middle that should be occupied by senior doctors, and junior doctors at the bottom—and not a sufficient number of nursing staff. Conclusion: Collaboration between physicians and nurses is critical to optimizing patients’ health outcomes. This is true not only in the United States but also in developing countries, such as Botswana, where health care professionals reported that their ethical challenges arose from resource shortages, differing professional attitudes, and a stressful work environment. (shrink)

Background The field of nursing has long been concerned with ethical issues. The history of the nursing profession has a rich legacy of attention to social justice and to societal questions regarding issues of fairness, access, equity, and equality. Some nurses have found that their clinical experiences spur an interest in ethical patient care, and many are now nurse bioethicists, having pursued additional training in bioethics and related fields (e.g., psychology, sociology). Purpose The authors describe how the clinical and research (...) experiences of nurses give them a unique voice in the field of bioethics. Results Authors present reasons for the relative invisibility of nurse bioethicists, compared with physician, theologian, or philosopher bioethicists, as well as current efforts to increase the visibility of nurse bioethicists. They also describe four specific areas where nurse bioethicists have made and continue to make important contributions: as ethics consultants to colleagues in hospitals and other settings; as bioethics researchers or as advisers to researchers conducting trials with human subjects; as educators of trainees, patients and families, healthcare providers, and the public; and in helping to draft humane and ethical policies for the care of vulnerable patients and underserved populations. Conclusion Nurse bioethicists are central to the future goals of healthcare bringing a unique perspective to the day-to-day ethical challenges of both clinical care and research, as well as to the education of health professionals and the public. (shrink)

Istarted my nursing career as a pediatric nurse working with children and their families at the Children's Hospital National Medical Center in Washington, DC. My first position was a staff nurse on a busy surgical floor called 4 Blue. To some degree, and as I reflect on that time, one is never truly prepared as a newly minted nurse or physician for the realities of becoming a clinician. So it was for me. I initially worked a rotational schedule of two (...) weeks of days and two weeks of nights where textbook pediatric cases became everyday experiences. Caring for the most complex of childhood illnesses included patients with osteosarcoma, Wilms tumor, neuroblastoma, short gut syndrome, biliary... (shrink)

Volume 20, Issue 6, June 2020, Page 68-70.

Background: Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. Objectives and Methods: This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate decision-making research. (...) Findings: Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates’ decision making, outcomes for surrogates, and an overarching theme of “wanting to do the right thing” for their loved one and/or themselves. Discussion: Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Conclusion: Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates’ end-of-life care planning experiences. (shrink)

Few bioethicists are educated with a view into nursing. Thus, much of the conceptual and empirical research on ethical issues in nursing practice has been conducted by nurse ethicists themselves and, to a lesser degree, by individuals with a strong interest in nursing ethics. Although this work has internally shaped nursing practice, education, and policy, the broader field of bioethics has seldom examined and acknowledged the everyday ethical concerns of practicing nurses and their important contributions to bioethics discourse. In this (...) special report of the Hastings Center Report —the first to focus on nursing—Christine Grady, Ann Hamric, and I, along with consulting editor Nancy Berlinger, strive to give voice to the contributions of nurses in addressing some of our obstinate everyday ethics and health policy challenges. (shrink)

BackgroundAdolescents living with human immunodeficiency virus (HIV) experience challenges, including lack of involvement in their care as well nondisclosure of HIV status, which leads to poor adherence to antiretroviral therapy (ART). Parents have authority over their children, but during adolescence there is an increasing desire for independence. The aim of the study was to explore adolescents’ experience of challenges identified by adolescents ages 10–19 years attending HIV care and treatment at Temeke Regional Referral Hospital in Tanzania. MethodsAn exploratory descriptive qualitative (...) design was employed in the HIV Care and Treatment Centre (CTC) in the Out-Patient Department at the Temeke Regional Referral Hospital in Tanzania with adolescents living with HIV who were 10–19 years of age. A total of 22 adolescents participated in semi-structured face-to-face interviews after parental consent and adolescent assent were obtained. Participants were interviewed about their participation in decisions to be tested for HIV and enrolled in the CTC, concerns surrounding disclosure of their HIV status to the adolescent or to others, stigma and discrimination, and the effect of these challenges on their adherence to medication. All interviews were audio-taped, transcribed verbatim in Swahili, and back-translated to English. Data analysis included both inductive and deductive thematic analysis.ResultsQualitative themes identified included lack of participation in decisions about HIV testing, challenges to enrollment in care and treatment; issues around disclosure of HIV status, such as delays in disclosure to the adolescent and disclosure to other persons and benefits and harms of such disclosures; and factors supporting and interfering with adherence to ART, such as parental support, organizational (clinic) support and problems, and self-stigmatization and shame.ConclusionLack of adolescents’ involvement in their care decision making and delayed disclosure of HIV status to the adolescent were identified concerns, leading to poor adherence to ART among adolescents. Disclosure to others, especially teachers, helped adolescents at school to take their medication properly. Disclosure to others led to stigma and discrimination for some adolescents. More research is needed to better understand the role of disclosure and its benefits and challenges for HIV-positive adolescents in Tanzania. (shrink)

The purpose of this study was to test a causal model of ethical conflict in practice and autonomy in a sample of 254 nurse practitioners working in the primary care areas of family health, pediatrics, adult health and obstetrics/gynecology in the state of Maryland. A test of the model was conducted using a path analytic approach with LISREL 8.30 hypothesizing individual, organizational and societal/market factors influencing ethical conflict in practice and autonomy. Maximum likelihood estimation was used to estimate the parameters (...) most likely to have generated the data. Forty-five percent of the total variance in ethical conflict was explained by the variables of ethical environment and ethical concern. Ethical concern, idealistic philosophy, ethics education in continuing education, percentage of client population enrolled in managed care, and market penetration explained 15% of the total variance in autonomy. The findings of this study indicate that the causal model of ethical conflict in practice and autonomy is consistent with the data and contributed to a fuller understanding of clinical decision making associated with practicing in a managed care environment. The final model supported a conceptual framework that is inclusive of three domains: individual, organizational and societal/market variables. (shrink)

Background: Informed consent is fundamental to the autonomous decision-making of patients, yet much is still unknown about the process in the clinical setting. In an evolving healthcare landscape, nurses must be prepared to address patient understanding and participate in the informed consent process to better fulfill their well-established role as patient advocates. Research objective: This study examines hospital-based nurses’ experiences and understandings of the informed consent process. Research design: This qualitative descriptive study utilized a semi-structured interview approach identifying thematic concerns, (...) experiences, and knowledge of informed consent across a selected population of clinically practicing nurses. Participants and research context: In all, 20 baccalaureate prepared registered nurses practicing in various clinical settings (i.e. critical care, oncology, medical/surgical) at a large northeastern academic medical center in the United States completed semi-structured interviews and a demographic survey. The mean age of participants was 36.6 years old, with a mean of 12.2 years of clinical experience. Ethical considerations: Participation in this study involved minimal risk and no invasive measures. This study received Institutional Review Board approval from the University of Pennsylvania. All participants voluntarily consented. Findings: The majority of participants (N = 19) believe patient safety is directly linked to patient comprehension of the informed consent process. However, when asked if nurses have a defined role in the informed consent process, nearly half did not agree (N = 9). Through this qualitative approach, three major nursing roles emerged: the nurse as a communicator, the nurse as an advocate, and the clerical role of the nurse. Discussion and conclusion: This investigation contributes to the foundation of ethical research that will better prepare nurses for patient engagement, advance current understanding of informed consent, and allow for future development of solutions. Nurses are at the forefront of patient–provider interactions and they are often presented opportunities to learn about and engage in the informed consent process. (shrink)

It is no secret that there are problems within hospitals and other healthcare settings across the United States that have been simmering for some time. With the emergence of the deadly SARs-CoV-2 v...

Evaluating readiness for discharge from the intensive care unit (ICU) is a critical aspect of patient care. Whereas evidence-based criteria for ICU admission have been established, practical criteria for discharge from the ICU are lacking. Often discharge guidelines simply state that a patient no longer meets ICU admission criteria. Such discharge criteria can be interpreted differently by different healthcare providers, leaving a clinical void where misunderstandings of patients’ readiness can conflict with perceptions of what readiness means for patients, families, and (...) healthcare providers. In considering ICU discharge readiness, the use and application of ethical principles may be helpful in mitigating such conflicts and achieving desired patient outcomes. Ethical principles propose different ways of understanding what readiness might mean and how clinicians might weigh these principles in their decision-making process. This article examines the concept of discharge readiness through the lens of the most widely cited ethical principles (autonomy [respect for persons], nonmaleficence/beneficence, and justice) and provides a discussion of their application in the critical care environment. Ongoing bioethics discourse and empirical research are needed to identify factors that help determine discharge readiness within critical care environments that will ultimately promote safe and effective ICU discharges for patients and their families. (shrink)

Background Financial compensation may be perceived as a catalyst to increase the recruitment and retention of healthy volunteers in clinical trials but also potentially as a form of undue inducement. The ethical guidelines in Tanzania, while helpful, are not clear on what is considered reasonable compensation for healthy volunteers and the extent to which it influences participation. This study aimed to explore research personnels’ perceptions of the ethical aspects of financial compensation to healthy volunteers participating in prevention trials in Tanzania.Methods (...) Qualitative semi-structured interviews were conducted in Tanzania with a purposive sample of 36 research personnel with different project roles ranging from principal investigators (PIs) to study staff on six prevention trials. The interviews were recorded and transcribed verbatim and thematic analysis was performed.Results Most research personnel were physicians (64%) and male (67%) with a mean age of 48 years. Three qualitative themes were identified: ethical justifications for financial compensation, ethical concerns about financial compensation and fair compensation as income. Most Tanzanian research personnel were more aligned with the view that financial compensation is an ethical responsibility in respecting the value of a healthy volunteer’s time and effort, especially for those who face barriers to participation, rather than being a bribe. However, there were those who raised ethical concerns about financial compensation that included perceptions of bribing low-income earners and increased misperceptions of trial activities. Research personnel also indicated that the specific amount of financial compensation has ethical implications. Amounts that were either too much or too little were viewed as unethical, whereas a modest rate was perceived as ethical.Conclusions Paying healthy volunteers is a measure of respect and supported by the national Tanzanian research guidelines. However, a reevaluation of these research ethical guidelines to redefine reasonable, fair and just financial compensation, especially for those who face significant barriers to participation, would continue to respect healthy volunteers and provide regional guidance for researchers within the country. (shrink)

Background Addressing drug use among pregnant and postpartum women is complicated by the social, ethical, and legal interplay between maternal and child needs. The moral experiences of providers as they care for this population are poorly understood. The purpose of this review is to synthesize the qualitative literature on the moral experiences of prescribing maternity providers managing the care of pregnant and postpartum women who use drugs (PPWUD), specifically focused on drug testing and child welfare reporting decisions. Methods The Hunt (...) and Carnevale (2011) bioethics framework was used to define moral experience as “a person’s sense that values that he or she deem important are being realized or thwarted in everyday life.” A systematic search of PubMed, PsycINFO, and CINAHL resulted in 31 eligible articles. Study quality was assessed using the Critical Appraisal Checklist for Qualitative Research from the Joanna Briggs Institute (2015). Thematic narrative analysis was used to synthesize results and identify themes. Findings Overall, maternity providers’ experiences were characterized by ethical conflicts influenced by provider-level and policy-level factors. Even when endorsing patient autonomy and parental rights, no maternity providers endorsed continued maternal substance use that placed the fetus or child at significant risk. Structural constraints within healthcare systems and punitive laws were cited as significant barriers to providing optimal care to PPWUD. Biased drug testing protocols and some child welfare reporting policies created ethical conflict by placing maternity providers’ relationship with their patients in opposition to their legal and ethical responsibility to report child maltreatment. Implications More rigorous characterization of these moral experiences is needed to support the development of provider-level interventions and policy-level changes as maternity providers care for both mothers and children impacted by drug use. (shrink)

Survivors of childhood brain tumors face many obstacles to living independently as adults. Causes for lack of independence are multifactorial and generally are investigated in terms of physical, cognitive, and psychosocial treatment–related sequelae. Little is known, however, about the role of expectation for survivors’ function. From a mixed–methods study including qualitative interviews and quantitative measures from 40 caregiver–survivor dyads, we compared the data within and across dyads, identifying four distinct narrative profiles: (A) convergent expectations about an optimistic future, (B) convergent (...) expectations about a less optimistic future, (C) non–convergent expectations about a less optimistic future, and (D) non–convergent expectations about an unclear future. Dyads both do well and/or struggle in systematically different manners in each profile. These profiles may inform the design of interventions to be tested in future research and help clinicians to assist families in defining, (re–)negotiating, and reaching their expectations of function and independence. (shrink)

Caring for seriously ill patients and their families during times of extreme stress is a privilege, but it can also bring much sadness and ethical turmoil for everyone involved, particularly at end of life. Patients and their families and the nurses and physicians who care for them are uniquely bonded together as they discuss, discern, and deliberate on some of the most heart-wrenching life and death decisions any patient, parent, family member, or partner can make. Shifting from a curative mode (...) of thinking is never easy, simple, or clear-cut. All of us share hopeful moments with our patients when we see, for example, an unexpected limb movement, a period of lucidity, or short-term physiological stability in... (shrink)

Excellent patient care within the emergency department requires interdisciplinary training, teamwork, and communication to manage the chaos of the environment. Specifically, invasive procedures required to manage airway, breathing, and circulation via intubation, chest compressions, and establishing intravenous access can provide a direct benefit to save lives but also have the potential to harm both patients and health care clinicians alike; emergency health care clinicians can be exposed to significant amounts of blood and body fluids as well as other threats of (...) physical and psychological harm. The ethical components of care in this environment are often under‐recognized due to the need for rapid patient assessment and immediate action. Moreover, challenges to practice that can include lack of qualified personnel, equipment, and other resources to provide safe care to a large volume of patients can lead to moral distress in ED staff. Because the ED is a high‐uncertainty, high‐acuity environment, continuing interprofessional communication, collaboration, and planning is critical. Opportunities for multidisciplinary policy dialogue and the development of professional guidelines can make the ED a safer environment for both patients and providers. (shrink)