Institutional ethics committees: a survey of children's hospitals

Institutional ethics committees first gained national prominence after the 1976 Karen Ann Quinlin decision by the New Jersey Supreme Court. However, it wasn't until the Federal Government promulgated the Baby Doe regulations in 1983 that significant movement occurred toward implementing such committees. Currently, statistics show that the number of ethics committees are increasing in health care institutions across the country. However, the majority of studies have focused on adult institutions. The membership of ethics committees and the objectives under which the committees function are usually addressed by the studies. Very little attention has been given to the nursing representation on the institutional ethics committee and the unique role played by nurses in the deliberation of ethical decision-making. It is the intent of this research to shed some light on the availability and functions of ethics committees within children's hospitals. Attention has also been given to the nurses' involvement on such committees. Additionally, the study takes a separate look at nursing ethics committees, their function within an institution, and the availability of ethics education for nurses. The study offers information not previously acknowledged in past studies of ethics committees. The study also opens up to consideration the unique concerns of nurses and their roles in ethical decision-making.     

Hospital ethics committees: is it time to expand our access to managed care organizations?

Hospital ethics committees provide important services to their institutions, often including review of clinical cases for which an ethical issue or dilemma has been recognized.Traditionally, such case reviews or consults by the ethics committee may be called by the patient and/or family and institutional healthcare providers. Recently, managed care organizations have requested an ethics committee case review at a Chicago area institution. This article will explore whether or not the time has come to expand hospital ethics committees access to managed care organizations.     

European experiences of ethics committees

The term 'ethics committees' is used for very different things in different parts of the world. In Europe, ethics committees are generally concerned only with research and (apart from Belgium where the same committees deal with both aspects) do not have anything to do with decision making in clinical situations. This article traces the history of ethics committees in the UK and some of the problems encountered by them. It goes on to detail the situation in a number of other European countries. Some topics of research touched on and published in articles in Nursing Ethics are then highlighted, thus making it clear that it is written from my perspective as the Editor of Nursing Ethics and with the help of some of the members of the Editorial Board. Finally, a number of questions are asked and answers attempted concerning the interests served by ethics committees.     

Biomedical ethics committees

As a consequence of rapidly increasing and complex ethical dilemmas in medicine, health care institutions are responding by forming biomedical ethics committees. In this article, the authors review the origins, functions, and potential drawbacks of these committees and also make suggestions on starting these committees.     

Local research ethics committees and nursing: a critical look.

The Department of Health guidelines on local research ethics committees are now in operation. But, are they enforceable and what relevance do they have to nursing?     

The ethical bureaucracy

Hands up those who think that research ethics committees aredoing a good job. Do not expect to see Drs Maskell, Jones andDavies waving. Last month in the QJM, they reported what happenedwhile they were setting up a multicentre study of intrapleuralstreptokinase.¹ They reckoned that the local investigators spent62 hours photocopying to produce the 25 296 pieces of paperneeded to satisfy the 51 local research ethics committees (LRECs)involved. Others have written about similar experiences.² The present system of research ethics committees in the UK wasestablished in 1997 by the Department of Health. Twelve multicentreresearch ethics committees (MRECs) were appointed to deal withapplications for studies and trials involving patients recruitedfrom within five or     

Ethics committees in long-term care facilities

Biomedical ethical dilemmas occur in long-term care facilities (LTCFs), particularly in the absence of residents' advance directives. Ethics committees are required in hospitals and long-term care facilities accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), but many LTCFs do not have JCAHO accreditation. A survey of LTCFs in one county in a Southwestern state found that only 29% of those LTCFs responding had an organized ethics committee. This article discusses the purpose, membership, and meetings of an ethics committee in LTCFs. A sample process for resolving a biomedical ethical dilemma is presented. Nurses can initiate the development of an ethics committee using available resources or combining resources with other local LTCFs. The ethics committee should consider the education of all persons involved to facilitate resolution of clinical ethical dilemmas.     

End-of-life nursing education consortium for pediatric palliative care (ELNEC-PPC)

Pediatric nurses must often care for children with life-threatening illness. Although the child may be a neonate with multiple organ failure, a young adolescent diagnosed with HIV, or a 7-year-old child involved in a serious bicycle accident, pediatric nurses are an essential part of the interdisciplinary team that plans, organizes, implements, and manages the care of these children and their families. To date, more than 600 pediatric nurses have attended a national End-of-Life Nursing Education Consortium-Pediatric Palliative Care (ELNEC-PPC) training program. Many of these nurses have returned to their institutions dedicated to making a difference in the palliative care provided to children and their families. Because pediatric palliative care education is so important, many trainers have incorporated ELNEC-PPC into their nursing orientation, annual competencies, and undergraduate and graduate nursing education. They are developing standards of care and serve on key hospital/hospice committees, such as policy, education, clinical care, and ethics committees. This article showcases various activities of ELNEC-PPC trainers and demonstrates their commitment to improve pediatric palliative care not only in their institutions but also on local, state, national, and international levels.     

Hospital ethics case consultations Practical Guidelines

Hospital ethics committees provide education, assist in policymaking, and deliver consultation services. In this article, we describe the structure, peration, and institutional framework within which an ethics committee fulfills its missions, with emphasis on the consultation process. The authors have stated that they donot have a significant financial interest or other relationship with any product manufacturer or provider of services discussed in this article. The authors do not discuss the use of off-label products, which includes unlabeled, unapproved, or investigative products or devices. The views expressed in this article do not necessarily represent the views of the Department of Veterans Affairs or the official policy of the Veterans Health Administration or the consultation policy of the Veterans Health Administration National Ethics Committee.     

Ethical and human rights concerns of Connecticut nurses: survey and implications for the profession

A survey of a random sample of Connecticut registered nurses' experiences with issues of ethics and human rights found a strong focus on protecting patient rights and dignity, adequacy of staffing patterns, informed consent, and respecting advance directives. Ethics committees were commonly available but were infrequently used. Participants reported high levels of ethics education but also desired more such education. The character of the issues is consistent with other studies and largely reflects conflicts over which nurses do not have independent control. Consideration is given to issues of nurses' moral agency in health care organizations.     

Possible relation between clinical guidelines and legal standard of medicine

Legal standard of medicine is not equal across the all kinds of medical institutions. Each medical institution is required its respective standard of medicine in which its doctors are expected to have studied medical informations, which have been spread among medical institutions with similar characteristics. Therefore, in principle, clinical guidelines for the treatment of a disease formed by public committees do not directly become the medical standards of respective disease treatment. However, doctors would be legally required to practice medicine with reference to the clinical guidelines because medical informations, mediated by internet or many kinds of media, have been spread very fast to all medical institutions these days. Moreover, doctors would be required to inform their patients of non-standardized new treatments, even if such treatments are not listed in clinical guidelines in case patients have special concern about new treat-     

Barriers and facilitators to consulting hospital clinical ethics committees

Hospitals in many countries have had clinical ethics committees for over 20 years. Despite this, there has been little research to evaluate these committees and growing evidence that they are underutilized. To address this gap, we investigated the question 'What are the barriers and facilitators nurses and physicians perceive in consulting their hospital ethics committee?' Thirty-four nurses, 10 nurse managers and 31 physicians working at four Canadian hospitals were interviewed using a semi-structured interview guide as part of a larger investigation. We used content analysis of the interview data related to barriers and facilitators to use of hospital ethics committees to identify nine categories of barriers and nine categories of facilitators. These categories as well as their subcategories are discussed and those specific to nurses or physicians are identified. The need to increase health professionals' use of clinical ethics committees through reducing barriers and maximizing facilitators is discussed.     

Industry-sponsored research in developing countries

BACKGROUND: Industry has become an important source of funding for clinical research; guidelines governing the relationship between industry and medical institutions are not clear in developing countries and hence we wanted to test attitudes and practices in those countries and compare them to developed countries. We conducted a survey amongst medical practitioners in developed and Arab countries representing developing countries, in order to document their views towards industry-sponsored research and their actual practice in this regard. METHODS: A structured questionnaire was distributed by email, mail and through personal contacts. The questionnaire included information on characteristics of the practitioners involved, their attitudes towards industry-sponsored research and their actual practices. The questionnaire was distributed to 510 medical practitioners of countries in both groups. Practitioners representing developed countries were from the United States, United Kingdom, Australia and New Zealand. Those representing developing countries included Arab countries from Asia and Africa. RESULTS: We found that there were contrasting views and practices between the two groups although more than 80% in both groups agreed that industry-sponsored research is necessary. 69.7% of respondents in developed countries participated in industry-sponsored research while only 30.1% did so in developing countries. Guidelines governing such research were better adhered to in developed countries than in developing countries. Where there were no authors who were not part of investigators in developed countries, 16.3% of industry-sponsored research in developing countries included authors who were not part of the investigators. Research ethics committees were present in 94% and 58% of institutions in developed and developing countries respectively. Review bodies were available in 57% and 41% in developed and developing countries. CONCLUSIONS: Industry-sponsored research is necessary; it is much more common in developed countries. Clear guidelines governing industry-sponsored research should be adopted in developing countries, including the establishment of research ethics committees and review bodies to monitor such research.     

Developing clinical ethics committees

Formal clinical ethics review first developed in the USA and most hospitals there have structures in place. This is often a clinical ethics committee. Developments have been slower in the UK, where there has been uncertainty and variability about the role of clinical ethics committees. Even in the USA, their exact role is uncertain. Although we now have a good idea of the mechanisms for ethical review of clinical issues in NHS trusts and health authorities, the desirability, composition and terms of reference for clinical ethics committees should be agreed as part of the clinical governance agenda.     

Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees

History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault's ideas of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed - not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies.     

A national survey of hospital ethics committees

A telephone survey of 602 randomly selected hospitals was conducted to identify existing ethics committees, i.e., those with the potential to become involved in the decision-making process in specific cases. Using the number of acute care beds as the criterion, hospitals were divided into 2 groups: (1) over 200 beds; n = 400; (2) 200 or fewer beds; n = 202. Chairpersons of identified committees completed detailed questionnaires. Seventeen committees were found--approximately 1% of all U.S. hospitals. A typical committee included physicians, clergymen, and other professionals. Almost all committees were advisory, not decision-making bodies, and considered very effective by their chairpersons. Ethics committees have not, however, solved current medical ethical problems; nor have they allayed the concerns of patients' rights advocates about patient representation and control. Further study is warranted.     

Human research ethics committees: issues in palliative care research

Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful construction of research protocols may overcome many of these problems. However, researchers may be powerless to overcome the discomfort of members of human research ethics committees (HRECs) who disallow access to palliative care patients and families. The notion of conducting research with this group is often perceived as abhorrent by those who do not practise in palliative care. This is because of a persistent idea that dying people and their families are so burdened by the dying process and so vulnerable to exploitation that they should not be approached to be involved in research. This over-protectiveness regarding palliative care research often distorts the proper gate-keeping role of HRECs and health-care professionals. This article draws on the authors' experiences of presenting applications to HRECs over the last 20 years. It explores the responsibilities of HRECs, the responsibilities of palliative care researchers and the rights of patients and families. HRECs and health professionals who endeavour to undertake palliative care research are encouraged to reflect and re-examine the role of ethics committees.     

Nurses serving on clinical ethics committees: a qualitative exploration of a competency profile

The competency profile underlying higher nursing education in the Netherlands states that bachelor-prepared nurses are expected to be able to participate in ethics committees. What knowledge, skills and attitudes are involved in this participation is unclear. In five consecutive years, groups of two to three fourth-year (bachelor) nursing students conducted 8 to 11 semi-structured interviews each with nurses in ethics committees. The question was what competencies these nurses themselves say they need to participate in such committees. This article reports the aggregate of the 52 interviews in these five studies. Regarding knowledge, the article reports on health law, ethics and professional knowledge. Regarding skills, communication is mentioned, as are professional skills and skills for 'doing ethics'. An open and respectful attitude towards patients and fellow committee members is required, as well as commitment to patient care, committee work and professional ethics. The right attitude for a nurse in an ethics committee is said to include a reflective and perceptive attitude, along with an awareness of one's own limitations and convictions. A detailed competency profile for nurses' participation in ethics committees as outlined in the recommendations may serve nursing education, institutional committees and nurses themselves to meet the demands of nurses' preparation for clinical ethics consultations.     

A relational ethical dialogue with research ethics committees

The aim of this article is to take relational ethics concepts and apply them to the context of application to research ethics committees for approval to carry out research. The process of a multinational qualitative research application is described. The article suggests that a relational ethics approach can address two issues: how qualitative proposals are interpreted by research ethics committees and how this safeguards potentially vulnerable respondents. In relational terms, the governance of a research project may be enhanced by shared ownership and willingness to engage in mutual dialogue. This challenges both researchers and research ethics committees to reframe their understanding of roles and functions in the assessment of research protocols, particularly those of a qualitative nature and those that address end-of-life issues.     

Should a ventilator be removed at a patient's request? An ethical analysis

The request of a ventilator-dependent quadriplegic person to be removed from the ventilator presents the health care team with an ethical dilemma. Application of ethical principles to case facts guides the decision maker. The ethical principle of autonomy requires that persons be respected and free to determine their course in life. The ethical principle of beneficence requires the health care team to actively benefit or do good for the patient. The ethical principle of nonmaleficence requires the health care team to refrain from harming a patient. The ethical duty of fidelity requires the nurse to be faithful to commitments made to patients. Ethical principles and duties are clear and straightforward. The decision of how they apply to a given case is not. However, applying them to a case, while not providing definitive answers, will provide the certainty that the decision was the best possible in a particular set of circumstances. An increasing number of cases similar to Joe's is being resolved in favor of discontinuing the ventilator. Emotional havoc could be the result to nurses who care for these patients. Individuals and institutions must begin planning strategies to deal with these and similar ethical dilemmas. Strategies might include anticipatory counseling, ethical decision making education programs and utilization of a nurse trained in ethics as a staff resource person. Nurses should attend and be involved in discussions of institutional ethics committees.(ABSTRACT TRUNCATED AT 250 WORDS)