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)

Encouraged by the success of smoking denormalization strategies as a tobacco-control measure, public health institutions are adopting a similar approach to other health behaviors. For example, a recent controversial ad campaign in New York explicitly aimed to denormalize HIV/AIDS amongst gay men. Authors such as Scott Burris have argued that efforts like this are tantamount to stigmatization and that such stigmatization is unethical because it is dehumanizing. Others have offered a limited endorsement of denormalization/stigmatization campaigns as being justified on consequentialist (...) grounds; namely, that the potential public health benefits outweigh any stigmatizing side effects. In this paper, I examine and reject the blanket condemnation of stigmatization efforts in public health. I argue that the moral status of such efforts are best evaluated within a contractualist, as opposed to a consequentialist, framework. Contractualism in public health ethics asks whether a particular stigmatizing policy could be justified to reasonable individuals who do not know whether they will be affected by that policy. Using this approach, I argue that it is sometimes permissible for public health institutions to engage in health-related stigmatization. (shrink)

The interpretation of the dead donor rule (DDR) has been central to recent debates regarding normothermic regional perfusion with controlled donation after circulatory death (NRP-cDCD). Proponents...

During the 1970s and 1980s, legal precedent, governmental recommendations, and professional society guidelines drove the formation of hospital ethics committees (HECs). The Joint Commission on Accreditation of Health Care Organization’s requirements in the early 1990s solidified the role of HECs as the primary mechanism to address ethical issues in patient care. Because external factors drove the rapid growth of HECs on an institution-byinstitution basis, however, no initial consensus formed around the structure and function of these committees. There are now almost (...) 40 years of empirical studies on the composition, administration, and activities of HECs in the United States. We conducted a systematic review of the available empirical literature on HECs to describe their evolution. As HECs changed over time, they increased their total number of members and percentage of members from nursing and the community. Although physicians increasingly chaired these committees, their presence as a percentage of overall members declined. The percentage of administrative members remained steady, although committees became increasingly likely to have at least one administrative member. HECs were also increasingly likely to report to an administrative body or to the board of trustees or directors rather than to the medical staff. Finally, consultation volume increased steadily over time. There has not, however, been a national survey of the composition of ethics committees, their administration, or volume of consultation in more than 10 years, despite increasing calls for professional standards and quality improvement assessments among HECs. (shrink)

Unrepresented patients lack the capacity to make medical decisions for themselves, have no clear documentation of preferences for medical treatment, and have no surrogate decision maker or obvious candidate for that role. There is no consensus about who should serve as the decision maker for these patients, particularly regarding whether to continue or to limit life-sustaining treatment. Several authors have argued that ethics committees should play this role rather than the patient's treating physician, a common current default. We argue that (...) concerns about the adequacy of physicians as surrogates are either empirically unfounded or apply equally to ethics committees. We suggest that physicians should be the primary decision maker for the unrepresented because of their fiduciary duties toward their patients. As part of the process of fulfilling these duties, they should seek the advice of third parties such as ethic committees; but final end-of-life decision-making for the unrepresented should rest with the treating physician. (shrink)

Growing evidence suggests that nurses and other clinicians often feel insufficiently equipped to manage ethical issues that arise in their practice (Truog et al. 2015; Woods 2005; Darmon et al. 201...

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)

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)

Recent research in epidemiology has identified a number of factors beyond access to medical care that contribute to health disparities. Among the so-called socioeconomic determinants of health are income, education, and the distribution of social capital. One factor that has been overlooked in this discussion is the effect that stigmatization can have on health. In this paper, I identify two ways that social stigma can create health disparities: directly by impacting health-care seeking behaviour and indirectly through the internalization of negative (...) interpersonal judgments. I then argue that social arrangements that foster self-respect can reduce the impact of stigmatization on health disparities. I conclude by showing how John Rawls' conception of justice can be used to address the intersection of stigma, health, and self-respect, in contrast to critics of his position, who have seen him as excessively focused on the allocation of material goods. (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)

Intensive care units provide focused, aggressive medical intervention to critically ill patients. Physicians responsible for ICU triage must decide which patients are sick enough to require this level of care and which can be managed on the general wards. While some patients are too well for the ICU, intensivists increasingly rely on another category, “too sick to benefit,” when denying ICU admission, even if beds are readily available. Recent studies indicate that between 19 and 37 percent of patients refused ICU (...) admission were declined because they were thought too sick to benefit from it, suggesting that physician use of this category is common in ICU triage.The idea of being too sick to benefit may seem paradoxical given that ICUs exist to treat the sickest of the sick. There is, however, increasing awareness that some diseases progress despite maximal intervention. Although there have been systematic attempts to define these diseases—most notably during the medical futility debates of the 1980s and early 1990s—there is little evidence about which conditions make a patient too sick to benefit from ICU admission. In the absence of a clear understanding of which diseases progress despite maximal care, ICU triage under the category “too sick to benefit” is currently done on a case‐by‐case basis. Contemporary decisions about who is too sick to benefit thus raise a number of ethical issues about what constitutes standard of care, the role of health care providers' judgments of quality of life in triage, and the just allocation of resources.Addressing these ethical concerns requires us to better define the population of critically ill adults who are too sick to benefit—a conceptual and empirical project. In this article, I recommend employing a diagnostic concept from the neonatal literature: namely, a lethal disease. (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)

The American Journal of Bioethics, Volume 11, Issue 7, Page 47-49, July 2011.

Childress et al. (2023) have provided a cogent overview of the ethical considerations involved in withdrawing extracorporeal membrane oxygenation (ECMO) over a capacitated patient’s objection. Alth...

Disparities in socioeconomic status correlate closely with health, so that the lower a person's social position, the worse his health, an effect that the epidemiologist Michael Marmot has labeled the status syndrome. Marmot has argued that differences in autonomy, understood in terms of control, underlie the status syndrome. He has, therefore, recommended that the American medical profession champion policies that improve patient autonomy. In this paper, I clarify the kind of control Marmot sees as connecting differences in socioeconomic status to (...) health disparities. I then discuss his use of Amartya Sen's capabilities approach to justice, arguing that he is unsuccessful in relating autonomy as a descriptive property with a normative framework that can adequately explain why and to what extent we should reduce health disparities. (shrink)

In June 2015, the major North American and European critical care societies released new joint guidelines that delineate a process-based approach to resolving intractable conflicts over the appropriateness of providing or continuing LST.2 This article frames the new guidelines within the history, ethical arguments, legal landscape, and empirical evidence regarding limitation of LST without surrogate consent in cases of intractable conflict.

Philosophical and political discussions of health inequalities have largely focused on questions of justice. The general strategy employed by philosophers like Norman Daniels is to identify a certain state of affairs—in his case, equality of opportunity—and then argue that health disparities limiting an individual's or group's access to that condition are unjust, demanding intervention. Recent work in epidemiology, however, has highlighted the importance of socioeconomic status in creating health inequalities. I explore the ways in which theories of justice have been (...) expanded in light of this data, suggesting that more work is required if such theories are to provide an adequate framework for addressing health disparities. I conclude by sketching an alternative possibility for thinking about health disparities outside of the context of justice. (shrink)

Philosophical and political discussions of health inequalities have largely focused on questions of justice. The general strategy employed by philosophers like Norman Daniels is to identify a certain state of affairs—in his case, equality of opportunity—and then argue that health disparities limiting an individual's or group's access to that condition are unjust, demanding intervention. Recent work in epidemiology, however, has highlighted the importance of socioeconomic status in creating health inequalities. I explore the ways in which theories of justice have been (...) expanded in light of this data, suggesting that more work is required if such theories are to provide an adequate framework for addressing health disparities. I conclude by sketching an alternative possibility for thinking about health disparities outside of the context of justice. (shrink)

In 2005, the relative risk of death was 30% higher for African Americans than White Americans, with differences in cardiovascular mortality accounting for the largest portion of this disparity (Cen...

Volume 20, Issue 7, July 2020, Page 158-160.

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)

Rapidly advancing technologies in the field of extracorporeal cardiopulmonary resuscitation (ECPR) have presented a new challenge in accurate neuroprognostication following cardiac arrest. Determination of brain state informs the prognostic picture and allows providers to begin effective communication regarding likelihood of meaningful neurological recovery as defined by patients or family members. The evolving role of sedation during ECPR and its impacts on ethical tension in decision-making is reviewed. Work surrounding the advancing field of neuroprognostication after cardiac arrest and hypothermia is summarized (...) and implications of premature withdrawal of life-sustaining treatments are discussed. Advances that improve predictive value for neurological recovery are utilized in affirming and discussing the implications for end-of-life wishes of individuals in the setting of intensive resuscitative therapies. (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)