Some health care organizations allow physicians to withhold cardiopulmonary resuscitation from a patient, despite patient or surrogate requests that it be provided, when they believe it will be more harmful than beneficial. Such cases usually involve patients with terminal diagnoses whose medical teams argue that aggressive treatments are medically inappropriate or likely to be harmful. Although there is state-to-state variability and a considerable judicial gray area about the conditions and mechanisms for refusals to perform CPR, medical teams typically follow a (...) set of clearly defined procedures for these decisions. The procedures are based on the principle of nonmaleficence and typically include consultation with hospital ethics committees, reflecting the guidelines of relevant professional associations. Ethical debates about when CPR can and should be limited tend to rely more on discussions of theory, principles, and case studies than systematic empirical study of the situations in which such limitations are applied. Sociologists of bioethics call for empirical study, arguing that what ethicists and health professionals believe they are doing when they draft policies or invoke principles does not always mirror what is happening on the ground. In this article, we begin the task of modeling the empirical analyses sociologists call for, focusing on a cohort at Massachusetts General Hospital. We inductively analyzed ethics committee notes and medical records of nineteen patients whose surrogates did not accept the decision to withhold CPR. (shrink)

One antidote to moral distress is stronger moral agency—that is, an enhanced ability to act to bring about change. The Clinical Ethics Residency for Nurses, an educational program developed and run in two large northeastern academic medical centers with funding from the Health Resources and Services Administration, intended to strengthen nurses’ moral agency. Drawing on Improving Competencies in Clinical Ethics Consultation: An Education Guide, by the American Society for Bioethics and Humanities, and on the goals of the nursing profession, CERN (...) sought to change attitudes, increase knowledge, and develop skills to act on one's knowledge. One of the key insights the faculty members brought to the design of this program is that knowledge of clinical ethics is not enough to develop moral agency. In addition to lecture‐style classes, CERN employed a variety of methods based in adult learning theory, such as active application of ethics knowledge to patient scenarios in classroom discussion, simulation, and the clinical practicum. Overwhelmingly, the feedback from the participants (sixty‐seven over three years of the program) indicated that CERN achieved transformative learning. (shrink)

The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called (...) A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work. (shrink)

Despite increased calls for hospital ethics committees to serve as default decision-makers about life-sustaining treatment for unrepresented patients who lack decision-making capacity or a surrogate decision-maker and whose wishes regarding medical care are not known, little is known about how committees currently function in these cases. This was a retrospective cohort study of all ethics committee consultations involving decision-making about LST for unrepresented patients at a large academic hospital from 2007 to 2013. There were 310 ethics committee consultations, twenty-five of (...) which involved unrepresented patients. In thirteen cases, the ethics consultants evaluated a possible substitute decision-maker identified by social workers and/or case managers. In the remaining cases, the ethics consultants worked with the medical team to contact previous healthcare professionals to provide substituted judgement, found prior advance care planning documents, or identified the patient’s best interest as the decision-making standard. In the majority of cases, the final decision was to limit or withdraw LST or to change code status to Do Not Resuscitate/Do Not Intubate. Substitute decision-makers who had been evaluated through the ethics consultation process and who made the final decision alone were more likely to continue LST than cases in which physicians made the final decision. In our centre, the primary role of ethics consultants in decision-making for unrepresented patients is to identify appropriate decision-making standards. In the absence of other data suggesting that ethics committees, as currently constituted, are ready to serve as substitute decision-makers for unrepresented patients, caution is necessary before designating these committees as default decision-makers. (shrink)

The idea of a role in nursing that includes expertise in ethics has been around for more than 30 years. Whether or not one subscribes to the idea that nursing ethics is separate and distinct from bioethics, nursing practice has much to contribute to the ethical practice of healthcare, and with the strong grounding in ethics and aspiration for social justice considerations in nursing, there is no wonder that the specific role of the nurse ethicist has emerged. Nurse ethicists, expert (...) in nursing practice and the application of ethical theories and concepts, are well positioned to guide nurses through complex ethical challenges. However, there is limited discussion within the field regarding the specific job responsibilities that the nurse ethicist ought to have. The recent appearance of job postings with the title “nurse ethicist” suggest that some healthcare institutions have identified the value of a nurse in the practice of ethics and are actively recruiting. Discomfort about the possibility of others defining the role of the nurse ethicist inspired this paper (and special issue). If the nurse ethicist is to be seen as an integral part of addressing ethical dilemmas and ethical conflicts that arise in healthcare, then nurse ethicists ought to be at the forefront of defining this role. In this paper, we draw upon our own experiences as nurse ethicists in large academic healthcare systems to describe the essential elements that ought to be addressed in a job description for a nurse ethicist practicing in a clinical setting linked to academic programs. Drawing upon our experience and the literature, we describe how we perceive the nurse ethicist adds value to healthcare organizations and teams of professional ethicists. (shrink)

In 2015, the major critical care societies issued guidelines outlining a procedural approach to resolving intractable conflict between healthcare professionals and surrogates over life-sustaining treatments (LST). We report our experience with a resolving conflict procedure. This was a retrospective, single-centre cohort study of ethics consultations involving intractable conflict over LST. The resolving conflict process was initiated eleven times for ten patients over 2,015 ethics consultations from 2000 to 2020. In all cases, the ethics committee recommended withdrawal of the contested LST. (...) In seven cases, the patient died or was transferred or a legal injunction was obtained before completion of the process. In the four cases in which LST was withdrawn, the time from ethics consultation to withdrawal of LST was 24.8 ± 12.2 days. Healthcare provider and surrogate were often distressed during the process, sometimes resulting in escalation of conflict and legal action. In some cases, however, surrogates appeared relieved that they did not have to make the final decision regarding LST. Challenges regarding implementation included the time needed for process completion and limited usefulness in emergent situations. Although it is feasible to implement a due process approach to conflict over LST, there are factors that limit the procedure’s usefulness. (shrink)

Previous research has suggested that individuals who identify as being more religious request more aggressive medical treatment at end of life. These requests may generate disagreement over life-sustaining treatment (LST). Outside of anecdotal observation, however, the actual role of religion in conflict over LST has been underexplored. Because ethics committees are often consulted to help mediate these conflicts, the ethics consultation experience provides a unique context in which to investigate this question. The purpose of this paper was to examine the (...) ways religion was present in cases involving conflict around LST. Using medical records from ethics consultation cases for conflict over LST in one large academic medical centre, we found that religion can be central to conflict over LST but was also present in two additional ways through (1) religious coping, including a belief in miracles and support from a higher power, and (2) chaplaincy visits. In-hospital mortality was not different between patients with religiously versus non-religiously centred conflict. In our retrospective cohort study, religion played a variety of roles and did not lead to increased treatment intensity or prolong time to death. Ethics consultants and healthcare professionals involved in these cases should be cognisant of the complex ways that religion can manifest in conflict over LST. (shrink)

Systematic study of the intersection of ethics consultation services and solid organ transplants and recipients can identify and illustrate ethical issues that arise in the clinical care of these patients, including challenges beyond resource allocation. This was a single-centre, retrospective cohort study of all adult ethics consultations between January 1, 2007, and December 31, 2017, at a large academic medical centre in the north-eastern United States. Of the 880 ethics consultations, sixty (6.8 per cent ) involved solid organ transplant, thirty-nine (...) (65.0 per cent) for candidates and twenty-one (35.0 per cent ) for recipients. Ethics consultations were requested for 4.3 per cent of heart, 4.9 per cent of lung, 0.3 per cent of liver, and 0.3 per cent of kidney transplant recipients over the study period. Nurses were more likely to request ethics consultations for recipients than physicians (80.0 per cent vs 20.0 per cent, p = 0.006). The most common reason for consultation among transplant candidates was discussion about intensity of treatment or goals of care after the patient was not or was no longer a transplant candidate. The most common reason for ethics consultation among transplant recipients was disagreement between transplant providers and patients/families/non-transplant healthcare professionals over the appropriate intensity of treatment for recipients. Very few consultations involved questions about appropriate resource allocation. Ethics consultants involved in these cases most often navigated communication challenges between transplant and non-transplant healthcare professionals and patients and families. (shrink)

Background: The bioethics literature contains speculation but little data about sociodemographic differences between patients for whom ethics committees (EC) are consulted for conflict about life-sustaining treatment (LST) and the broader hospital population that these committees serve. To provide an empirical context for this discussion, we examined differences in five sociodemographic factors between patients for whom an EC was consulted for conflict over LST and the general inpatient population, hypothesizing that nonwhite patients were most likely to be disproportionately represented. Methods: This (...) was a retrospective cohort study comparing self-reported race/ethnicity, household income, insurance status, primary language, and religious affiliation between patients involved in EC consultations for conflict over LST and the general adult inpatient population at a large academic hospital from January 1, 2007, through December 31, 2013. Results: There were 169 EC consultations involving conflict over LST and 243,197 adult inpatient admissions over the study period. On bivariate analysis, patients for whom the EC was consulted for conflict over LST were more likely to be nonwhite, low-income, and to speak a primary language other than English. They were not more likely to be underinsured or to report a religious affiliation. On multivariate analysis, patients for whom the EC was consulted for conflict over LST were more likely to be nonwhite (odds ratio [OR], 2.5; 95% confidence interval [CI], 1.7–3.7; p <.001). They were also more likely to be low income (OR, 1.8; 95% CI, 1.1–3.0; p =.02). They were not more likely to speak a primary language other than English (OR, 1.4; 95% CI, 0.9–2.1; p =.17). None of the assessed variables were associated with conflict over LST requiring additional meetings beyond the first EC consultation. Conclusions: Nonwhite and low-income status patients are disproportionately represented in EC committee consultation for conflict over LST compared to the general inpatient population. (shrink)

Critical care society guidelines recommend that ethics committees mediate intractable conflict over potentially inappropriate treatment, including Do Not Resuscitate status. There are, however, limited data on cases and circumstances in which ethics consultants recommend not offering cardiopulmonary resuscitation despite patient or surrogate requests and whether physicians follow these recommendations. This was a retrospective cohort of all adult patients at a large academic medical center for whom an ethics consult was requested for disagreement over DNR status. Patient demographic predictors of ethics (...) consult outcomes were analyzed. In 42 of the 116 cases, the patient or surrogate agreed to the clinician recommended DNR order following ethics consultation. In 72 of 74 of the remaining cases, ethics consultants recommended not offering CPR. Physicians went on to write a DNR order without patient/surrogate consent in 57 of those cases. There were no significant differences in age, race/ethnicity, country of origin, or functional status between patients where a DNR order was and was not placed without consent. Physicians were more likely to place a DNR order for patients believed to be imminently dying. The median time from DNR order to death was 4 days with a 90-day mortality of 88.2%. In this single-center cohort study, there was no evidence that patient demographic factors affected ethics consultants’ recommendation to withhold CPR despite patient/surrogate requests. Physicians were most likely to place a DNR order without consent for imminently dying patients. (shrink)

The lung allocation score system in the United States and several European countries gives more weight to risk of death without transplantation than to survival following transplantation. As a result, centers transplant sicker patients, leading to increased length of initial hospitalization. The care of patients who have accumulated functional deficits or additional organ dysfunction during their prolonged stay can be ethically complex. Disagreement occurs between the transplant team, patients and families, and non-transplant health care professionals over the burdens of ongoing (...) intensive intervention. These cases highlight important ethical issues in organ transplantation, including the nature and requirements of transplant informed consent, the limits of physician prognostication, patient autonomy and decision-making capacity following transplant, obligations to organ donors and to other potential recipients, and the impact of program metrics on individualized recipient care. We outline general ethical principles for the care of lung transplant recipients with prolonged hospitalization and give regulatory, research, and patient-centered recommendations for these cases. (shrink)

In this issue of American Journal of Bioethics, Childress et al. address one of the most challenging modern clinical ethical dilemmas: the awake, competent patient dependent on extracorporeal membr...

The COVID‐19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID‐19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models and to (...) consider needs for additional support. Twenty semi‐structured interviews were conducted with sixteen nurses and four respiratory therapists via Zoom or by telephone. Interviews were transcribed verbatim, identifiers were removed, and data was coded and analyzed thematically. Five major themes characterize providers' experiences: a fear of the unknown, concerns about infection, perceived professional unpreparedness, isolation and alienation, and inescapable stress and distress. This manuscript analyzes the relationship between these themes and the concept of moral distress and finds that some, but not all, of the challenges that providers faced during this time align with previous definitions of the concept. This points to the possibility of broadening the conceptual parameters of moral distress to account for providers' experiences of treating patients with novel illnesses while encountering institutional and clinical challenges. (shrink)

While a significant literature has appeared discussing theoretical ethical concerns regarding COVID-19, particularly regarding resource prioritization, as well as a number of personal reflections on providing patient care during the early stages of the pandemic, systematic analysis of the actual ethical issues involving patient care during this time is limited. This single-center retrospective cohort mixed methods study of ethics consultations during the first surge of the COVID 19 pandemic in Massachusetts between March 15, 2020 through June 15, 2020 aim to (...) fill this gap. Results indicate that there was no significant difference in the median number of monthly consultation cases during the first COVID-19 surge compared to the same period the year prior and that the characteristics of the ethics consults during the COVID-19 surge and same period the year prior were also similar. Through inductive analysis, we identified four themes related to ethics consults during the first COVID-19 surge including (1) prognostic difficulty for COVID-19 positive patients, (2) challenges related to visitor restrictions, (3) end of life scenarios, and (4) family members who were also positive for COVID-19. Cases were complex and often aligned with multiple themes. These patient case-related sources of ethical issues were managed against the backdrop of intense systemic ethical issues and a near lockdown of daily life. Healthcare ethics consultants can learn from this experience to enhance training to be ready for future disasters. (shrink)

Teachers and teacher educators in the US struggle with conflicting needs. They must think critically and adaptively in response to the rapidly changing demographics of their students and adjust to a policy climate that emphasizes standardization, measurement, and disregard for teachers as professionals. Embattled pre-service teacher education programs in institutions of higher education have traditionally sought to develop teacher candidates’ knowledge, skills, and dispositions. The authors argue that in the current climate pre-service teachers also must appropriate conceptual frameworks to support (...) their development as responsive professionals. While dispositions are beliefs and attitudes the origin and teaching of which remain in dispute, concepts like social justice, political-economic equity, and formative assessment are abstract ideas or concepts that inform practice. Conceptual tools, i.e., concepts, theories, and frameworks, guide novice teachers in making decisions in response to the growing and rapidly changing student populations they will teach as well as the policy contexts that constrain their teaching practice. The appropriation of conceptual tools contributes to development of vision and adaptive expertise required by responsive teacher professionals. Using an activity theory framework developed by Wartofsky that draws in particular on the classification of artifacts, or tools, this article frames and critically examines teachers’ need for conceptual tools, the appropriation of those tools, and a mixed methods study of that appropriation. The study demonstrates that teacher candidates do appropriate conceptual tools, but that measurement of that process, though desirable in the current policy context, requires the development of a systematic and replicable methodology. (shrink)

We describe the structure, operation, and experience of the Massachusetts General Hospital ethics committee, formally called the Edwin H. Cassem Optimum Care Committee, from January 2007 through December 2013. Founded in 1974 as one of the nation’s first hospital ethics committees, this committee has primarily focused on the optimum use of life-sustaining treatments. We outline specific sociodemographic and clinical characteristics of consult patients during this period, demographic differences between the adult inpatient population and patients for whom the ethics committee was (...) consulted, and salient features of the consults themselves. We include three case studies that illustrate important consult themes during this period. Our findings expand knowledge about the structure and workings of hospital ethics committees and illustrate how one ethics committee has developed and utilized policies on end-of-life care. More generally, we model a sociological approach to the study of clinical ethics consultation that could be utilized to contextualize institutional practices over time. (shrink)

A growing body of research has demonstrated significant heterogeneity of hospital ethics committee (HEC) size, membership and training requirements, length of appointment, institutional support, clinical and policy roles, and predictors of self identified success. Because these studies have focused on HECs at a single point in time, however, little is known about how the composition of HECs changes over time and what impact these changes have on committee utilization. The current study presents 20 years of data on the evolution of (...) the Massachusetts General Hospital HEC. Between 1993 and 2012, the average number of committee members per year was 38 ± 3 and the average length of membership was 4.8 ± 0.4 years. During that time, the committee performed 934 consults, averaging 47 ± 3 per year. Attendance rates fell from 61.5 to 23.8 % over the study period and were inversely correlated with the total number of members. Between 1993 and 2012, the committee saw substantial growth in the diversity of the professional backgrounds of its members. Multivariate analysis, however, suggests that substantial changes in committee composition did not impact its utilization and that other factors are more likely to explain fluctuations in consultation volume. (shrink)