ETHICS COMMITTEES AND ETHICS CONSULTATION

The dominant mechanism for dealing with clinical ethics problems in healthcare at the beginning of the twenty-first century is the ethics committee. Present in various capacities since the 1960s, ethics committees in their contemporary form emerged in the late 1970s and 1980s in response to the growing need for a formal means to address ethical issues in clinical settings (Fost and Cranford). Early ethics committees were typically staffed by physicians and convened on an ad hoc basis. Indeed, in the period immediately following In re Quinlan (1976), ethics committees functioned largely as prognosis committees for difficult end-of-life cases in acute care settings. A 1983 study indicated that only about 1 percent of all U.S. hospitals had ethics committees, a figure that is consistent with this very limited function (Youngner, Jackson, Coulton, et al.). As awareness of the value-laden nature of clinical decision making grew, so did the role and number of ethics committees. Just four years later, a 1987 study suggested the presence of ethics committees in over 60 percent of U.S. hospitals (Fleetwood, Arnold, and Baron). In 1998–1999, the University of Pennsylvania Ethics Committee Research Group (ECRG) conducted the most comprehensive study of ethics committees to date and found that approximately 93 percent of U.S. hospitals have ethics committees (McGee, Caplan, Sanogle, et al.). Around the same time, an Agency for Healthcare Research and Quality (AHRQ) study of ethics consultation in U.S. hospitals, a standard function of ethics committees today, found ethics consultation services in all U.S. hospitals with 400 beds or more, all federal hospitals, and all hospitals that are members of the Council of Teaching Hospitals (Fox). Though there has been no systematic study of the presence of ethics committees outside of hospital settings, it should be noted that ethics committees are present in many other healthcare settings, such as long term care, hospice, and even home care.

Contemporary ethics committees are usually standing committees with multidisciplinary representation, including medicine, nursing, social work, law, pastoral care, healthcare administration, and various specialty areas (McGee, et al.). The primary functions of contemporary ethics committees are ethics education, policy formation and review, and ethics consultation, in decreasing order of time commitment (McGee, et al.).

Education

In re Quinlan gave impetus to the development of early ethics committees. Since, as mentioned above, these committees were largely staffed by physicians and primarily concerned with prognosis issues in end-of-life situations, the educational needs of ethics committee members were rather narrowly focused. Encouraged, among others, by a President's Commission (1983), professional societies such as the American Medical Association (1985), and accrediting bodies such as the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO, 1992), ethics committees evolved to become the primary mechanism through which clinical ethics issues are formally addressed. Educational efforts of a thriving ethics committee should include self education, education of health professionals and staff, and community outreach. Of these, self education is critical as it is an important precondition of both sound policy formation and review and ethics consultation. Consistent with this, the 1999 ECRG study indicated "self education" as the single activity to which ethics committees devoted the highest percentage of time (McGee, et al.).

Though physicians and nurses make up the largest majority of ethics committee membership, most ethics committees are multidisciplinary with members from social work, pastoral care, legal, and administration, among others (McGee, et al.). This broad spectrum of health professionals brings valuable experience and perspective in dealing with clinical ethical issues, which are inevitably complex and multilayered. The vast majority of ethics committee members, however, have no formal education or training in clinical ethics; thus self education is an important ethics committee activity (Fox; McGee, et al.). Indeed, in the 1999 ECRG study mentioned above, half of all ethics committee chairs reported "feeling inadequately prepared to address" the issues they face (McGee, et al.). This is not surprising, given that ethics committees face an array of complex clinical ethics issues, including informed consent and refusal of treatment, decision capacity or competence, confidentiality and privacy, minors and decision making, and a host of issues related to end of life decision making. To deal with these and other clinical ethics issues, ethics committees need to have a sustained self-education program.

Ethics committees have used a variety of means to meet this need. Ethics committees at academic medical centers, for example, often have members who are bioethics faculty at their respective centers or departments who are able to offer (or arrange for) ethics education for the committee. Some ethics committees that are part of large integrated systems may have access to system-supported centers or departments of clinical ethics that themselves offer ethics education for committee members. A notable example of this is the Veterans Health Administration (VHA), which has established a National Center for Ethics in Health Care, in part to assist in meeting the educational needs of ethics committee members throughout the VHA network (Glover and Nelson). Ethics committees without access to these types of resources might identify one or two members willing to do formal education and training in clinical ethics through the completion of a clinical bioethics degree, fellowship, or certificate program. Other ethics committees avail themselves of sustained continuing ethics education offered through regional ethics networks such as the University of Pittsburgh's Consortium Ethics Program (Pinkus), the Midwest Ethics Committee Network of the Medical College of Wisconsin (Kuczewski), or the West Virginia Network of Ethics Committees (Moss). These efforts foster partnerships to bring the bioethics resources often present in primarily academic settings to serve the broader healthcare community (Glover and Nelson).

Policy Formation and Review

A second important function of ethics committees is policy formation and review. The type and number of policies that are formulated or reviewed by the ethics committee will vary depending on the nature of the institution, and the authority and responsibility of the ethics committee. For example, a medical-staff-level ethics committee at a major academic medical center may have input on a large number of ethicsrelated policies. In addition to any policy governing the ethics committee itself, these might include policies governing informed consent, end-of-life decisions (e.g., advance directive and life-sustaining treatment policies), brain death, organ donation and transplant, disclosure of medical mistakes, and so forth. Indeed, the policy formation and review function of ethics committees has developed to the point where a number of "model policy" manuals are available as resources for ethics committees that may be struggling to establish themselves (Aspen Health and Administration Development Group). In addition to these more traditional ethics policy areas, ethics committees are increasingly being asked to give input on organizational ethics issues, especially when these issues may have an impact on patient care (Schyve, Emanuel, Winslade, et al.). The JCAHO ethics standards, for example, extend to organizational ethics issues (e.g., marketing, billing, financial incentives for clinicians, and so forth) and explicitly acknowledge the interdependence of patient rights and organizational ethics (see JCAHO, 2002).

Ethics Consultation

Ethics consultation, perhaps the best known and most discussed function of ethics committees, commands only about 20 percent of ethics committee effort, with the average number of consults ranging from twelve to twenty-three per year (McGee, et al.). Though variously defined, ethics consultation is "… a service provided by an individual or a group to help patients, families, surrogates, healthcare providers, or other involved parties address uncertainty or conflict regarding value-laden issues that emerge in healthcare" (American Society for Bioethics and Humanities, p. 3). Clinical ethics consultation focuses on ethical issues that arise in specific clinical cases and on policy consultation regarding patient care issues. As noted above, partly due to the rise of managed care in the United States, the 1990s brought a growing awareness of the important relationship between clinical and organizational ethics, thereby raising the visibility of organizational ethics consultation. The midto late-1990s also saw the first national level effort in the United States to set voluntary standards for ethics consultation when the American Society for Bioethics and Humanities (ASBH) released its report Core Competencies for Health Care Ethics Consultation. The report was the result of a two year effort by a national task force on standards for bioethics consultation which functioned as a consensus panel.

The prevalence of ethics consultation is hard to gauge. Ellen Fox's AHRQ supported study of ethics consultation in U.S. hospitals found that approximately 81percent of all U.S. hospitals have an ethics consultation service of some kind; ethics consultation services were found to be present in 100 percent of hospitals with 400 beds or more, federal hospitals, or hospitals that are members of the Council of Teaching (Fox). The same study estimated that each year in U.S. hospitals, approximately 35,000 individuals are involved in performing over 15,000 ethics consultations. The predominant model for ethics consultation is a small team approach (68%), as opposed to a full committee (23%) or an individual consultant (9%). Of those doing ethics consultation, 36 percent are physicians, 30 percent are nurses, 11 percent are social workers, 10 percent are chaplains, and 10 are administrators, while less than 1 percent are philosophers or theologians. Only 5 percent of those doing ethics consultation were reported to have completed a fellowship or degree program in bioethics or to have had any formal education or training for ethics consultation other than direct supervision (Fox).

From its inception in the late 1960s and early 1970s through the present, ethics consultation has raised a number of controversial questions (LaPuma and Schiedermayer; Singer, Pellegrino, and Siegler; Fletcher, Quist, and Jonsen). Some of these questions are directly attributable, no doubt, to the fact that ethics consultation emerged in part to address highly-charged and conflicted issues such as withholding or withdrawing life-sustaining treatment (see also In re Quinlin). Other questions, however, are endemic to the practice of ethics consultation. These include both practical and theoretical questions such as: What types of issues are involved in ethics consultation? Is ethics consultation best done by individuals, teams or committees? What is an appropriate approach to ethics consultation? What types of skills and knowledge are important for doing ethics consultation? Should those doing ethics consultation be required to be certified or accredited in some way? How might ethics consultation be evaluated?

In order to see the controversial and complex nature of these questions, it will be helpful to consider a case that is fairly representative of the types of cases that are brought to ethics consultation services, the Case of Mr. Jones:

Mr. Jones, an 82 year old man, came to the ER with a gangrenous leg. He had fallen in his apartment and was unable to contact family or friends. Mr. Jones was discovered by his niece, his closest living relative, two days later. Mr. Jones, who was otherwise healthy, needed to have his leg amputated in order to save his life (without amputation he was likely to die from septicemia). Mr. Jones adamantly refused amputation and expressed a deep desire to die "in one piece." Mr. Jones' niece was devastated by his refusal of amputation and wanted the healthcare team to save her uncle's life. Mr. Jones' niece felt responsible for his condition since she was supposed to check-in on him everyday, but she had missed a day due to illness. Members of the healthcare team were split over whether Mr. Jones' refusal of treatment should be honored. The attending physician believed that the team had a moral obligation to go ahead with amputation since it was a "straightforward, relatively low risk, procedure that could save Mr. Jones' life." He argued that the procedure was "ordinary," not "extraordinary," and therefore obligatory. He emphatically stated "I became a doctor to save life, not to watch people die because they are afraid!" Other members of the healthcare team, especially several nurses, thought Mr. Jones' wishes should be respected. Some worried, however, that Mr. Jones might be depressed and was trying to kill himself by refusing amputation. An ethics consultation was called to resolve the conflict. (Aulisio, 1999, p. 211)

TYPES OF ISSUES. Clinical ethics consultation typically involves any of a range of clinical ethics issues, including informed consent, decision capacity, surrogate decision making, confidentiality and privacy, and a variety of issues surrounding end of life care (ASBH). The best current data suggests that a number of different types of cases are brought to ethics consultation and that these cases themselves may involve a variety of issues. For example, the ECRG study by McGee, et al. lists research trials, new technologies, patient autonomy and competency, cost containment, distribution of goods, improving communications, clinician competency, and end-of-life decision making as among the most common issues raised in ethics consultation. Among these, the largest percentage by far fall into three categories: patient autonomy and competence (38%–25%); improving communications (35%±26%); and end of life (7%±21%).

The case of Mr. Jones, however, illustrates well how a single case can (and often does) raise multiple issues, and the problem of categorizing cases. The case surely raises questions about patient autonomy and competence, as some members of the healthcare team fear that Mr. Jones may be depressed and "trying to kill himself" by refusing amputation. The case also raises questions about end-of-life decision making: Should Mr. Jones, even if competent and well informed, be allowed to refuse a life saving intervention? What is an appropriate role for family members or loved ones in end-of-life (or other) decisions? When are health professionals obliged to accede to patient wishes? Are health professionals ever permitted to override patient wishes or refuse to participate in certain patient decisions? Lastly, the case might just as easily be categorized as an "improving communications" case. Mr. Jones, for example, may simply not understand that he will die without the amputation due to septicemia, because he is confused by technical medical terminology or because he mistook probabilistic language as uncertainty on the part of his doctors.

In addition to the multiple issues that might be raised in a single case, the actual practice of ethics consultation differs from mere case analysis in important ways. As the 1998 ASBH report states, "The actual cases that give rise to these questions frequently also have complex interpersonal and affective features, such as guilt over a loved one's sickness or impending death, disagreement among healthcare providers, possible conflicts of interest, or distrust of the medical system. Increasingly, ethical issues regarding clinical care are raised or complicated by organizational factors" (ASBH, p. 3).

Even from a distance, one can discern these features in the case of Mr. Jones. His niece's feeling of guilt is a powerful factor in the case, as are divisions among members of the healthcare team. These factors are compounded by the time pressures of a real case, i.e., that a decision must be made and soon.

INDIVIDUALS, TEAMS, OR COMMITTEES. Though nearly always conducted under the auspices of an ethics committee, ethics consultation may be done by individual consultants, small groups or teams, or a full ethics committee. Which of these models is best is a matter of some controversy (Rushton, Youngner, and Skeel). Consultation by ethics committee was the dominant model following the Quinlan case and the rise of ethics committees in general. If ethics consultations are rare and called only in crisis situations, consultation by a full committee may be practical; however, the more active the consult service the more cumbersome full committee consults will be. Full committee consults also tend to be more formal and adversarial (Rushton, et al.). In contrast, consultation by an individual ethics consultant, though possibly present in a few U.S. healthcare institutions as early as the late 1960s or early 1970s, grew in popularity through the early 1990s at least in part as an alternative to full committee consults. Criticized by some as anti-democratic, the individual consultant model, though efficient, is impractical for many institutions because of the knowledge, skill and time demands it places on one person (Rushton, et al.). A small ethics consult team that functions as an extension of the ethics committee is probably the best model for most institutions. Not surprisingly, in U.S. hospitals today, as noted above, the predominant model for ethics consultation is a small team (Fox).

APPROACHES TO ETHICS CONSULTATION. A number of different approaches to ethics consultation can be found in the literature (Agich; ASBH; Rubin and Zoloth-Dorfman; Zaner). These range from those focused primarily on conflict resolution through facilitation or negotiation, to those that emphasize consensus building, to more directive approaches aimed at guiding participants to the morally "right" solution. One of the challenges for proponents of ethics consultation over the years has been to carve out a role for it that is consistent with societal values. In the United States, this means creating a model of ethics consultation that is consistent with the defining characteristic of a liberal society: that no particular set of substantive moral values should be politically privileged. For example, in the case of Mr. Jones, all involved parties have a right to their moral views and those moral views are widely divergent. Indeed, it is arguably the convergence of these features with the complex and value-laden nature of medical decision making that creates the need for ethics consultation in contemporary clinical settings (Aulisio, 2003).

In the case of Mr. Jones, the intersection of these factors leads to a value conflict that raises a question regarding the role of ethics consultation. Whether or not it is "right" to amputate Mr. Jones's leg depends, in part, on the individual set of values through which the decision is assessed. Mr. Jones's niece and the attending physician think that the morally right course is to amputate Mr. Jones's leg, but for different reasons. Mr. Jones, because he values "dying whole," considers the morally right course to be one that allows him to keep his bodily integrity, even if it ultimately leads to his death. According to the case vignette, "an ethics consultation was called to resolve the conflict," but how should the conflict be resolved? The ethics consultants themselves will bring their own moral values to the case. Should they help resolve the case based on whether their moral values are more in line with those of the doctor, nurse, niece, or patient? Do they get to play the role of the moral sage, adjudicating on who is morally right—that is, who has the correct values? What is the role of ethics consultation in such a case?

The most strident critics of ethics consultation have made much of this problem, claiming that ethics consultation is at odds with democratic values (Ross; Scofield). Democratic values alone, however, would leave ethics consultation susceptible to a tyranny of the majority, in which the morally appropriate course might be determined, for example, by a vote. The deeper question is whether there is an appropriate role for ethics consultation that is consistent with the rights of individuals to live by their values (that is, consistent with a liberal society) (May). The 1998 ASBH report recognized the importance of societal context in informing a proper role for ethics consultation when it stated that:

… societal values frame the context in which ethics consultation occurs and, therefore, shape the appropriate role for ethics consultation in contemporary healthcare settings. Individuals, for example, do not give up the right to live by their own moral values when they become patients or take up the practice of healthcare. These rights set boundaries that must be respected in ethics consultation, and they often suggest who has decision-making authority in different types of cases. Discussions of these boundaries, not surprisingly, comprise a large portion of the bioethics literature (e.g., explorations of informed consent, autonomy, confidentiality, privacy, resource allocation, and conscientious objection). Indeed, helping to identify the implications of these rights and who has decisionmaking authority in particular cases is an important role for healthcare ethics consultation in our society (p. 4).

Though a full characterization of any approach to ethics consultation is well beyond the scope of this entry, it should be noted that the ASBH report does go on to endorse what it terms an "ethics facilitation" approach to ethics consultation that is intended to be consistent with the societal context described above. "Ethics facilitation," according to the report, aims at "identifying and analyzing the nature of the value uncertainty" that underlies the request for consultation and "facilitating the building of consensus" among involved parties (pp. 6–7). This approach is contrasted with what the report terms "pure facilitation" and "authoritarian" approaches to ethics consultation, which risk running afoul of appropriate boundaries for ethics consultation and displacing those with legitimate decision-making authority. The "ethics facilitation" approach aims at consensus building but in deference to the decision-making authority of involved parties. Indeed, when a consensus cannot be reached, the report recommends that

… the proper course of action can sometimes be determined by answering the question "Who should be allowed to make the decision?" Societal values often indicate who should be allowed to make the decision in the absence of consensus. As several of the cases above underscore, the right of a competent and well informed patient to refuse treatment typically establishes decision-making authority even if some family members or healthcare providers disagree with the decision. Similarly, the right of conscientious objection typically gives a healthcare provider the authority to refuse to participate in a procedure that would seriously violate his or her conscience even if a patient and/or family wants the provider to participate (p. 8).

It is important to note that, at a general level, the ethics facilitation approach as characterized in the ASBH report is far more concerned with who has the right to decide than with who is right, and with building a consensus that respects legitimate decision-making authority. In the case of Mr. Jones, this would require establishing whether he is competent and well informed. If so, his moral and political right to accept or refuse treatment is firm and, thus, any consensus will have to respect his decision-making authority (this does not preclude compromises or even a change of heart on his part). It is also important to highlight the general nature of the ethics facilitation approach and its potential compatibility with many different consult models and methodologies. Attempts to offer normative characterizations of ethics consultation, with their attendant methodological questions, will undoubtedly continue to receive attention in the coming years.

SKILLS AND KNOWLEDGE. Just as there is some disagreement about broad approaches to ethics consultation and more particular methodological issues regarding how ethics consultations should be done, there is also some disagreement about the skills and knowledge required to do ethics consultations. Some emphasize the importance of a strong clinical background such as medicine or nursing, while others emphasizes the importance of formal education and training in ethics, or, more commonly, bioethics (LaPuma and Schiedermayer; Baylis). Despite the disagreements in emphasis, there are some broad areas of agreement regarding core skills and knowledge for ethics consultation. The ASBH Task Force tried to capture these in its 1998 report, Core Competencies for Ethics Consultation.

The 1998 ASBH report articulated the broad skill areas as including interpersonal, process, and ethical assessment. Ethical assessment skills are those involved in identifying and analyzing the ethical issues that arise in specific clinical cases. This might include the ability to distinguish the ethical from other (e.g., legal, medical, psychiatric) dimensions of the case, identify relevant values, clarify key concepts, and justify a range of morally acceptable options given the contextual features of the case. Certain types of process skills, such as the ability to facilitate meetings and build consensus, are likewise central to helping to resolve ethical conflicts in actual cases. Finally, certain types of interpersonal skills are critical to nearly every aspect of ethics consultation. For example, the ability to listen well and to communicate interest, respect, support, and empathy to involved parties will be important throughout the consult process.

With respect to important knowledge areas for those doing ethics consultation, the 1998 ASBH report emphasized the importance of advanced knowledge in three areas as they relate to ethics consultation: moral reasoning and ethical theory; bioethical issues and concepts; and local healthcare institution's relevant policies. The report identified six additional areas in which those doing ethics consultation should have basic knowledge: clinical context, relevant health law; knowledge of local healthcare institution, beliefs and perspectives of patient and staff population, relevant codes of ethics and professional conduct, and guidelines of accrediting organizations.

It is important to underscore that the skill and knowledge can be distributed across a small team or even a full committee, depending on the model for ethics consultation employed. As noted above, over 90 percent of U.S. hospitals employ a team or committee approach, while less than 10 percent employ an individual consultant. The "core competency" recommendations are fair less onerous when considered against this backdrop. Individual ethics consultants, however, may need to supplement their professional backgrounds in order to satisfy these recommendations. This is discussed in the ASBH report and elsewhere (Baylis).

Conclusion

There are, of course, a plethora of other issues that must be addressed as ethics committees and ethics consultation continue to evolve and develop. These include questions concerning how their activities might be evaluated, legal liability for committees and consultants, and the everpresent question of whether committees or consultants should be certified or accredited in some form. Some of the data considered above, however, suggest a more immediate and pressing concern. Recall that contemporary ethics committees are usually standing committees with multidisciplinary representation, including medicine, nursing, social work, law, pastoral care, healthcare administration, and various specialty areas, and that half of all ethics committee chairs reported "feeling inadequately prepared to address" the issues they face (McGee, et al.). Even more concerning, recall that only 5 percent of those doing ethics consultation were reported to have completed a fellowship or degree program in bioethics, or to have had any formal education or training for ethics consultation other than direct supervision (Fox). Perhaps the single biggest challenge in the immediate future, then, will be helping to ensure that ethics committee members and ethics consultants have adequate education and training to carry out the important work that is entrusted to them.

mark p. aulisio

SEE ALSO: Casuistry; Clinical Ethics; Consensus, Role and Authority of; Healthcare Institutions; Hospital, Modern History of the;Long-Term Care; Managed Care; Organizational Ethics in Healthcare; Surrogate Decision-Making

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