- *Department of Pediatrics, Division of Hematology/Oncology/Bone Marrow Transplant, Children’s Mercy Hospitals and Clinics, Kansas City, MO.
- †Children’s Mercy Bioethics Center and Department of Pediatrics, University of Missouri-Kansas, Kansas City, MO.
Drs Myers and Lantos have disclosed no financial relationships relevant to this article. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device.
- infant care review committee
- institutional ethics committee
During the last 30 years, most children’s hospitals in the United States have created pediatric ethics committees or other formal methods to address the ethical issues that arise in the clinical practice of tertiary care pediatrics. Ethics committees or consultants are called on to advise physicians, nurses, other health care professionals, and parents in cases that raise controversial ethical issues. They take many forms and use many different processes to identify and resolve ethical dilemmas.
Such committees have themselves been somewhat controversial. On the surface, they seem to be well accepted. They are endorsed by the American Academy of Pediatrics, (1) by the Joint Commission, (2) and in many legal decisions. (3) Although well accepted by many physicians and nurses, ethics committees are only consulted approximately once a month or less in most children’s hospitals. (4)
In this article, we review the history of pediatric ethics committees, discuss their roles, and examine some critiques of ethics committees. We then discuss attempts to define the process of ethics consultation and measure the quality of such consultations. We conclude with a tentative agenda for future research on the efficacy of pediatric ethics committees.
Pediatric Ethics Committees: A (Very) Brief History
The idea of hospital ethics committees was first proposed by a pediatrician. In 1975, Dr Karen Teel, a Texas pediatrician, published a short article in the Baylor Law Review. (5) She chose to publish in a law journal rather than a medical journal, suggesting that the climate at the time within medicine was not receptive to the idea of committees to review the ethics of clinical decisions. Clinical-ethical issues were seen more as dilemmas for the legal profession than for physicians.
Teel suggested that the role for ethics committee consultation was to help physicians deal with clinical-ethical dilemmas that arose in the practice of pediatrics. She expressed dismay at the “lines (drawn by the law) beyond which the rights of parents and other individuals do not extend. These lines must be more clearly defined … and there must be a system of advocacy … which ensures that a child’s rights are observed.” Teel acknowledged that medical education did not provide much training about the ethical and legal dilemmas frequently encountered by physicians. Thus, she suggested, the potential benefits of ethics committee consultation were likely to outweigh the potential harms of committee involvement in dilemmas such as the removal of life-sustaining treatments and concerns primarily related to euthanasia.
Teel’s article was cited by the New Jersey Supreme Court in its 1977 decision approving the removal of Karen Ann Quinlan’s ventilator. (6) The court recommended that all hospitals create ethics committees to help with such dilemmas. However, the role of such committees was not clear. In Teel’s article, she conceptualized them as “prognosis committees” whose role would be to bring together groups of experts to help attending physicians clarify whether, in a particular case, there was any hope of recovery. In an analysis of the ways that ethics committees evolved, Moreno suggested that the term ethics committee may have led to confusion. (7) Prognosis committees for individual cases were engaged in a different activity than were committees that addressed issues such as resource allocation or hospital policies.
Despite Teel’s article being the first formal call for ethics committees, some hospitals had already created such committees.
The Human Rights Committee at the Children’s Hospital of Pittsburgh
A year before Dr Teel’s publication, the Children’s Hospital of Pittsburgh renamed its research review committee. They called it the Human Rights Committee and imagined for it a role in reviewing both research protocols and ethical dilemmas that arose in clinical care outside the research context. In 1984, Michaels and Oliver (8) reported the experience of the committee in a review of the first 12 years of existence. This is one of the first published reports of a clinical ethics committee in a children’s hospital.
A few aspects of the work of the Pittsburgh Human Rights Committee are noteworthy. First, they expanded the research review committee to include nonmedical members, including a number of members with no institutional allegiance. They did this to bring more perspectives to bear on dilemmas that were primarily about human values and ethics, not science or medicine. Second, from the beginning, consultation with the Children’s Hospital of Pittsburgh Human Rights Committee was optional and the committee’s role was advisory. The committee’s recommendations were not binding. The role of the committee was to gather facts, facilitate conversation, and help the clinicians better understand all of the medical facts, options, and ethical implications of decisions. The committee had a standard approach to this task. They started by interviewing the physician and clarifying the medical facts. Sometimes, they sought further information and specialist consultation. Although the consultations in particular cases were always advisory and optional, the committee also became involved in shaping clinical care through the “establishment of hospital policy and education.” Policy guidelines concerning brain death, cardiopulmonary resuscitation, innovative therapy, and human rights consultation have been the focus of the committee.
Although some, such as Dr Teel, were identifying an urgent need and requesting the formation of committees to assist in the resolution of difficult ethical dilemmas, others were beginning to experiment with how such committees realistically function.
The Legacy of Baby Doe
Many hospitals formed ethics committees in the wake of the Quinlan decision. The process was accelerated by the Baby Doe case in the early 1980s. That case involved an infant with Down syndrome whose parents refused surgery to correct esophageal atresia. The case eventually led to federal regulations that recommended that all children’s hospitals form infant care review committees (ICRCs). (9) To aid institutions in forming such committees and, likely, to provide some consistency in their formation and function, in 1984, the American Academy of Pediatrics published guidelines for ICRCs. (10) The guidelines suggest that ICRCs should only make recommendations on courses of action when agreement between the treating team and a family cannot be reached and that the status quo should be maintained while legal proceedings are being instituted. It is not just hospitals or courts that dictate the formation of ethics committees. The 1992 Accreditation Manual for Hospitals Supplement from the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) cites a role for committees as a mechanism for consideration of ethical issues arising from patient care. (11) Although such committees were created, there were few studies of how they functioned. There seemed to be little uniformity in the ways they would decide particular cases. (12)
Many critics, particularly lawyers and physicians, were concerned about the nonuniform, unregulated approach to the development of pediatric ethics committees. These critics feared that such committees might have more power than was appropriate without the safeguards of either medical professionalism or legal due process to prevent abuse of that power. Many questions arose. Did ICRCs simply diffuse responsibility for controversial decisions? Was the committee, in fact, responsible for the decision? Were their recommendations truly just advisory or were they, in effect, binding? Did different committees decide similar cases differently and, if so, was that a problem? Was there any standard approach to the process of consultation? The questions seemed valid because ethics committees had no credentialing, no due process procedures, and no common method for actually performing consultations. Some committees use multiple consultants. Some involve the whole committee in each consultation.
The 1984 American Academy of Pediatrics guidelines for ethics committees suggest the inclusion of all interested parties. However, they don’t define interested parties, so these guidelines may be interpreted differently in different hospitals. This might allow some people to have undue influence while other people are excluded from the decision-making process. The Texas Advanced Directive Act, which specifies specific roles for ethics committees, has been criticized for allowing only certain voices to be heard. Truog wrote, “The ethics committee is acting, under Texas law, as a surrogate judge and jury, with the statutory power to authorize clinicians to take actions against the wishes of a patient and family, with protection against civil and criminal liability. But whereas the judicial system assures Americans of having a ‘jury of peers,’ hospital ethics committees are not held to this standard. Although it is true that most committees include one or two members of the community (often grateful patients of the hospital), most members are physicians, nurses, and other clinicians from the hospital staff. Without in any way calling into question their motivations or intentions, we must recognize that they are unavoidably ‘insiders,’ completely acculturated to the clinical world and its attendant values. This is hardly a ‘jury of peers’ for a low-income woman of color and her infant son.”
The lack of standards and the variability in formation and function of institutional ethics committees (IECs) have led to significant concerns about the integrity of ethics consultation.
Critiques of Ethics Committees
By the early 21st century, ethics committees had been around long enough to have developed standard approaches to consultation; however, these approaches attracted critics. In 2001, Spielman (13) published an indictment of ethics consultation by IECs. Spielman argues that, starting with the Quinlan case, “lawmakers, hoping to improve health care decision-making, began to delegate powers to health care ethics consultants. Lawmakers have contributed to the growth of a practice that has no professional standards but that now includes decision-making, providing legal immunity, providing legal opinions, attesting, and administering patient rights in life-and-death matters.” Spielman cites several cases where misuse of institutional bioethics committee consultation has resulted in violation of rights of patients and where personal values of ethics consultants have influenced advice and recommendations. Lack of professional standards would prevent consultants from adequately performing in their role as educators, leading to limited education of interested parties in the case. She also points out the varied role of such committees from state to state. She criticizes ethics committees and consultants for the “… lack of professional ethics or regulation in the field [and] the potential misuses of power and privilege.” She suggests, “Ethics consultants’ privileges and powers to affect others’ legal rights have grown considerably, without concomitant checks and balances to safeguard the public.” She proposes a statute to deal with the “two most critical problems … ethics consultants’ failure to treat their own conflicts of interest seriously and their failure to give adequate attention to the scope of their practice, especially to legal communications, and by extension, to the legal rights of the consultation participants.” The proposed statute suggests a monetary penalty for violations, primarily concerning failure to disclose conflicts of interest or communications that focus on matters that concern risk management for the sake of the institution.
Spielman’s critiques are thoughtful and powerful. There clearly is a potential for abuse in the largely unregulated practice of ethics consultation. Efforts to standardize approaches to consultation and study the outcomes of consultation in the field of pediatrics and effects on the treating team, patients, and parents have been inadequate, but they have not been entirely absent.
Three Examples of Professional Regulation and Study of Ethics Committees
Development and Sharing of Consultation Guidelines
In 1991, Baylis published Guidelines for Bioethics Consultations at the Hospital for Sick Children [Toronto, Ontario]. (14) The stated purpose of consultations was to “assist patients, parents, legal guardians, and members of the health care team in their management of situations that have ethical implications.” Requests for consultation could be made by a patient, family member, legal guardian, or a member of the health care team. The initial consultant discusses the case with the chair of the bioethics committee to triage the case. Referral to another body or committee, a discussion between the consultant and person requesting the consultation, a larger discussion with interested parties and one or more members of the committee, or any combination of these options might come of a consultation request. The guidelines also list a requirement for certain information for the consultation to take place, thus providing some standardization to the process.
Identification of Core Competencies
The American Society of Bioethics and Humanities has written extensive Core Competencies for Bioethics Consultation. In 2010, the Clinical Ethics Consultation Advisory Committee provided a report to the American Society of Bioethics and Humanities. (15) In the report, the Clinical Ethics Consultation Advisory Committee suggested certification of individuals conducting clinical ethics consultation. They recommended that to be certified an ethics consultant should function at the level of the advanced practitioner and should be able to demonstrate working knowledge of the core competencies. In the wake of this report, there seems to some movement toward certification of consultants. (16)(17)
Peer-Reviewed Surveys of Practice
Levine-Ariff surveyed children’s hospitals. In Institutional Ethics Committees (IEC): A Survey of Children’s Hospitals, she found that 80% of these hospitals had an ethics committee. (18) This number was slightly higher if the hospital had a neonatal intensive care unit and/or a pediatric intensive care unit. Most were medical staff committees (55%), but more than one-third reported to the hospital administration. All committees had multiple functions, with 55 of 58 hospitals with ethics committees reporting consultation as a duty. A total of 39.6% developed policy and 77% performed education. Ninety-five percent of hospitals reported that IEC decisions and recommendations were nonbinding, but 5% reported that decisions were binding. The study concluded that there was a “clear movement toward effective multidisciplinary committees to help guide practitioners.” The authors of this study acknowledge the need to better understand “the effectiveness of the committees, the impact of education, the types of policies established and whether environments that have IECs promote more open discussion and shared decision-making.” These findings are similar to conclusions of other surveys such as the ones by Fox et al in 2007 (19) and Kesselheim et al in 2010. (4) These noted that all large (>400-bed) hospitals have ethics committees or consultative services, but only 5% of consultants had formal training in ethics consultation. Less than 50% of consultants had been consulting more than 5 years, and they found little clarity in the standards for consultative practice. Understanding the reasons why physicians and other staff contact ethics consultants is also under investigation, and the results of such study may contribute to the focus and objectives of educational efforts for potential consultants. For example, DuVal et al (20) suggest that most consultations are triggered by “conflicts and other emotionally charged concerns (rather than) other cognitively based concerns.” Research in such areas can guide training of consultants in the future.
Still, although many members of ethics committees at pediatric or adult institutions have not had training in ethics consultation, efforts to certify ethics consultants have been controversial and have lagged behind the development of the committees and policies relevant to their function. Although many institutions may support an ethics committee, these authors were unable to find evidence that consultative services were monetarily reimbursed in any way. Such practices would be very controversial. Burda (21) points out that most bioethicists would likely agree that consultative services should be available to all, not just those with insurance coverage that happens to cover such consultations.
Children’s hospital ethics committees endeavor to improve patient care by improving clinicians’ awareness of the ethical implications of their decisions. These goals are admirable. It is unclear, however, whether ethics committees are successful at improving patient care. We do not know whether or to what degree they are hampered by lack of well-trained ethics consultants, conflicts of interest, inadequate procedural safeguards during ethics consultation, or other factors that might lessen the effectiveness of ethics consultation. As leading children’s hospitals develop more formal bioethics programs, one urgent task of such programs should be to study the process of ethics consultation and develop metrics for assessing the quality and effectiveness of ethics committees and consultants.
- 1.↵American Academy of Pediatrics, Committee on Bioethics. Institutional ethics committees. Pediatrics. 2001;107(1):205–209
- 2.↵Joint Commission on Accreditation of Healthcare Organizations. Comprehensive Accreditation Manual for Hospitals: Update 1. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organization; 1999:RI-R11
- 3.↵In re L. W., 482 NW2d 60 (Wis 1992) or In re A. C., 573 A2d 1235 n2 (DC 1990)
- Kesselheim JC,
- Johnson J,
- Joffe S
- 6.↵In re Quinlan 70 N.J. 10, 355 A.2d 647 (NJ 1976)
- Moreno JD
- Michaels RH,
- Oliver TK Jr
- 10.↵American Academy of Pediatrics. American Academy of Pediatrics Infant Bioethics Task Force and Consultants: guidelines for infant bioethics committees. Pediatrics. 1984;74(2):306–310
- 11.↵Joint Commission. Accreditation Manual for Hospitals Supplement from the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO). Oakbrook Terrace, IL: Joint Commission; 1992
- 15.↵Clinical Ethics Consultation Advisory Committee (CECA) Report to ASBH. Chicago, IL: American Society for Bioethics and Humanities; 2010
- DuVal G,
- Sartorius L,
- Clarridge B,
- Gensler G,
- Danis M
- © American Academy of Pediatrics, 2014. All rights reserved.