Clinical Ethics: III. Institutional Ethics Committees
III. INSTITUTIONAL ETHICS COMMITTEES
Ethics committees have played clinically relevant roles in U.S. healthcare contexts since the 1960s. At that time, some hospitals established committees to approve requests for abortion and sterilization and to allocate scarce dialysis machines. Universities and hospitals created human subjects committees to scrutinize research protocols and consent forms; in the 1970s, these committees became federally mandated institutional review boards (IRBs).
In the 1976 Quinlan case, in which parents won the authority to remove a ventilator from an incompetent adult child, the New Jersey Supreme Court recommended that hospitals establish ethics committees to confirm prognoses in cases involving withdrawal of life support. The 1982 "Baby Doe" ruling that allowed parents to withhold a life-saving operation from an infant with Down syndrome led to the establishment of infant-care review committees in cases of withholding or withdrawing life support from disabled newborns. In 1983, a report from the U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research encouraged the formation of hospital ethics committees to review cases that raised ethical dilemmas and to resolve ethical conflict.
By the mid-1980s, a movement had begun to establish institutional ethics committees in healthcare facilities, especially in hospitals. In 1982, only 1 percent of all U.S. hospitals had ethics committees; by 1987, over 60 percent did (Fleetwood et al.). Ethics committees were endorsed in this period by leading professional groups, including the American Medical Association, the American Hospital Association, the American Academy of Pediatrics, and the American Academy of Neurologists. Growth in the number of institutional ethics committees continued into the 1990s and spread to nursing homes and hospices (Glaser). It is likely that the number and influence of these committees will grow as the length of stay in hospitals continues to decline and more patient days are spent outside hospitals. Moreover, with the shift of many kinds of care to alternative sites, it is likely that other institutional ethics committees will develop and spread—in home-healthcare agencies and managed-care networks, for example. Hospital ethics committees remain, however, the most common institutional ethics committees and the most closely analyzed in bioethics literature.
There is a paucity of empirical studies of hospital ethics committees. Committees have a "grass-roots" character, reflecting a variety of local circumstances and personalities. These factors make it hard to generalize. Nevertheless, some typical features have emerged. One of these features is interdisciplinary composition. Generally, committees are composed of doctors, nurses, social workers, pastoral-care professionals, and philosophers or theologians trained in ethics. Committee members can also include administrators, hospital attorneys, and consumer or community representatives. Committees are sometimes authorized by the medical staff; sometimes by the hospital governing board; sometimes by the administration.
Functions of Ethics Committees
Committee functions vary but generally include one, two, or all three of the following. First, institutional ethics committees create a vehicle for education on ethical dimensions of patient care. Committees typically have dual efforts in this respect: education of the committee itself, through discussion of current bioethics literature, for example; and education of the medical staff and hospital employees, by organizing periodic lectures, panel discussions, and "ethics grand rounds."
Second, committees draft institutional policies on ethical questions. This may arise through committee initiative. For example, a hospital panel discussion may reveal the need for a new policy on withholding resuscitation from dying patients, and the ethics committee takes the lead by preparing a first draft. New policies or review of existing policies may also be requested from the ethics committee by the hospital administration, or other hospital committees may route drafts of proposed policies and revisions of existing policies to the committee for review and comment.
Third, many institutional ethics committees offer ethics consultations, prospectively or retrospectively, on difficult clinical cases, often those involving the withholding or withdrawal of life-support measures. This last function— ethics consultation, especially for ongoing cases—has been the main focus of discussion in the bioethics literature. Seven issues have dominated these discussions: questions of competence and authority; impact on the doctor-patient relationship; access to consultation; recordkeeping and charting; problems of evaluation; unsettled legal questions; and questions about the purpose or purposes of consultations.
COMPETENCE AND AUTHORITY. Some committees that offer consultation services, generally smaller committees, consult as a committee of the whole. Larger committees typically have a subcommittee that consults prospectively and reports to the committee as a whole for retrospective review of its work. Some committees offer consultation through a single ethics consultant who may be on the committee or have a formal relationship with it. Some critics have expressed concern that when committees consult, difficult ethical choices will be affected by compromise, hospital politics, professional rivalries, and conformism (Wikler). Concerns about competence have been raised when individuals provide consultations. Clinicians typically have few of the skills of trained ethicists and vice versa.
Continued spread of ethics committee consultation to more hospitals and nonhospital settings is indirect evidence that the challenges to competence and authority are being met successfully. Furthermore, most published concerns about the competence of committees or individuals are from the 1970s "first wave" of writing about institutional ethics committees, at a time when the idea of ethics consultation was new and controversial. The literature of the 1980s and 1990s displays a growing confidence about the concept of ethics consultation and more attention to resolving specific problems. Apparently, committees had learned to negotiate without conformism or loss of principle. Individuals have been acquiring the proper expertise: clinicians gaining the analytic techniques of ethicists, and ethicists learning to apply their analyses in clinically relevant ways.
Gender-related questions have not been raised directly in the bioethics literature on ethics committees. However, they are raised indirectly when the focus is on the role of nurses, given the fact that most nurses are women. Nurses have been excluded from some committees, could not access them for consultation, or have found their special ethical concerns omitted from consideration. In addition to the gender issue, this situation raises questions of professional status in relation to other healthcare providers. In some hospitals, these problems have been addressed by the formation of nursing ethics committees (Edwards and Haddad).
There has also been a suggestion in the literature that ethics committees, especially those that are or function as infant-care review committees, should include persons with disabilities on the committee (Mahowald). This step could help ensure that the quality of life of persons with disabilities is not undervalued in deliberations about treatment decisions.
DOCTOR–PATIENT RELATIONSHIP. Trust in the doctor-patient relationship is grounded in the doctor's professional obligation to the patient. Some have expressed concern that ethics consultations will undermine that obligation and trust by limiting doctors' authority to act for their patients or by encouraging abdication of the responsibility (Siegler). These concerns are addressed or attenuated by the fact that use of a committee's consulting service is generally optional and its findings are advisory (Fost and Cranford). It should be admitted, however, that when an ethics consultation is sought and its findings are received, a de facto "burden of proof" may be imposed on those doctors who choose to reject or ignore the ethics committee's advice. They will probably need to muster strong reasons for doing so.
ACCESS TO CONSULTATION. Who should have the authority to request an ethics consultation? Some committees use a medical model whereby only the attending physician can initiate a consultation; he or she alone joins in the deliberations and receives the advice. But many committees allow other physicians, nurses, other professionals, and the patient and family to initiate consultations.
There are two main reasons why ethics committees reject the medical model. First, ethical dilemmas in patient care, especially those surrounding withholding or withdrawing life support, are felt acutely by all professionals involved. Second, if the consulting process helps to delimit or set priorities for a patient's options, the patient's right of informed consent may require that he or she, or a surrogate, be able to participate in the consultation. There is no clear pattern for such participation in the literature. Some consulting teams interview competent patients; others do not. Some encourage the presence of patients or surrogates at consultations; others do not. While most committees that reject the medical model respond to patient requests for consultation, it is not clear generally whether objection by a patient or surrogate can prevent an ethics consultation or stop one that has been initiated by others.
RECORDKEEPING AND CHARTING. Some committees and consultants keep no records in order to ensure patient confidentiality and to prevent the use of committee deliberations in legal proceedings. Plainly, all institutional ethics committees must carefully adhere to the norms of medical confidentiality, but the prevailing wisdom is that ethics committees should keep good records and should enter their advice and reasons for it into the patient's active chart (Cranford et al.). Such procedures build trust in the committee, educate the medical and nursing staffs on ethical issues, and provide accountability for committee advice in what are often literally life-and-death decisions.
EVALUATION. The brief history of most ethics committees, the confidential status of what they do, and the ambiguity many of them experience about their roles, especially in consultation, have made it difficult to conduct comprehensive evaluation of their effectiveness. Moreover, there is no independent standard of right and wrong against which the advice of these committees can be measured. However, committees can be evaluated by reference to their own mission statements, by written assessments of those who request consultations, and by the informal measures of success as an interdisciplinary forum: enhanced institutional sensitivity to ethical issues and increased requests for consultation (Van Allen et al.).
Some ethics committees use very explicit regulations or ethical guidelines for consulting. These documents could provide norms for more focused evaluation of consultation. Hospitals in the Veterans Administration system, for example, employ detailed national protocols on withholding and withdrawing life support. Catholic hospitals make explicit use of ethical guidelines contained in the Ethical and Religious Directives for Catholic Health Facilities (Craig et al.).
UNSETTLED LEGAL QUESTIONS. A number of legal questions about ethics committees remain unsettled for want of legislation and court decisions. Can an ethics committee and/or its members be sued and held accountable in civil or criminal actions? Are the records of an ethics committee discoverable? If used in court, what weight should they be given (Wolf)? There is also a widely held, but undocumented, view that the availability of an ethics committee can lessen the likelihood of litigation because it provides a forum for resolving conflict and because it allows for thorough examination of ethical issues that frequently have significant legal components.
THE PURPOSE OR PURPOSES OF CONSULTATIONS. Several authors have argued that protection of patients' interests should be the single purpose of an institutional ethics committee's consultation (Hoffmann). But it is also clear that consultations often serve other purposes: to assist caregivers, to support patients' families, to negotiate compromise when disputes arise, to protect the hospital, to offer the correct or best moral advice. Sometimes these other purposes can conflict with the purpose of protecting the patients' best interests. Moreover, in some cases a patient's apparent best interest is incompatible with what the patient demands. Clear strategies for dealing with such conflicts have not yet emerged in the bioethics literature, but they are plainly needed.
Much remains to be done to sharpen the focus of the work of institutional ethics committees and to evaluate the strengths and weaknesses of various committee and consultation models. This area is one of social experimentation and will remain so into the foreseeable future. Nevertheless, in a very short time, ethics committees have contributed greatly to the general bioethics agenda of creating dialogue on ethics issues in healthcare. Most acute-care hospitals in the United States, and many other settings where chronically ill and dying patients receive care, have an established institutional vehicle for explicit, interdisciplinary discussion of difficult ethical issues.
charles j. dougherty (1995)
SEE ALSO: Anthropology and Bioethics; Autonomy; Beneficence; Bioethics, African-American Perspectives; Care; Casuistry; Coercion; Compassionate Love; Competence; Confidentiality; Conscience, Rights of; Death; Ethics; Healthcare Resources, Allocation of; Informed Consent; Life, Quality of; Nursing Ethics; Patients' Rights;Pastoral Care and Healthcare Chaplaincy; and other Clinical Ethics subentries
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