Clinical Ethics Committees and Ethics Support Infrastructure: A European Perspective

The purpose of this article is to provide a short overview of the condition of clinical ethics committees (CECs) and other forms of the so-called "ethics support" infrastructure. This includes but is not limited to CECs because some countries also have ethics consultation services that function independently from the CECs. It seems that properly structured CECs and other types of ethics support have a potential to act as facilitators of ethically sensitive healthcare decision-making. This goal can be achieved if the ethics support infrastructure becomes an integral part of the healthcare institution where the majority of ethical dilemmas and the need for ethical debate arise. At the same time, CECs can become a useful tool for implementing bioethical standards developed at both national and international levels, including those established by the Council of Europe instruments. This is the main reason why the issue of developing clinical ethics support services might be very important for the Steering Committee on Bioethics (CDBI) of the Council of Europe. More specifically, the question is what special role ethics support services can play in the context of the follow up to the Council of Europe Symposium in the decision-making process regarding medical treatment in end-of-life situations (Strasbourg, 30 November-1 December). Very often, cases to be considered by the CECs and ethics consultants deal with the difficult end-of-life treatment choices.

The article will cover and address the following issues:

• • A comparison of institutionalisation of research ethics and clinical ethics;

• • A short overview of developing CECs and clinical ethics infrastructure in different countries;

• • The main problems related to institutionalisation of clinical ethics; and

• • An action plan to involve the CDBI

Institutionalisation of Research Ethics and Clinical Ethics

Compared to clinical ethics, research ethics has a much better developed institutional and procedural framework. First, numerous international research ethics guidelines provide a universal framework for implementation of research ethics principles at the national level. Second, and most importantly for our discussion, research ethics has a clearly identifiable institutional framework, i.e., the ethical review of research protocols by research ethics committees. Such a review has become the universally accepted procedure before starting human subject research in the EU and the Council of Europe countries. The contribution of the Council of Europe in this process is also clearly seen. The Additional Protocol to the Convention on Human Rights and Biomedicine Concerning Biomedical Research and recently adopted Guide for Research Ethics Committee Members CDBI/INF(2011)2 are a good example of the attempt to implement normative principles into the field of biomedical research. ¹

The infrastructure for ethical decision-making in the hospital setting is much less developed as compared to research ethics. ⁷ For example, in contrast to research ethics committees, in some countries, there is no formal legal or regulatory governance framework for CECs. ⁹

On the other hand, awareness of the importance of developing institutional mechanisms that facilitate ethical decision-making in clinical practice has increased. ^3,6,7 Clinical ethics committees (sometimes also called hospital ethics committees) have usually been engaged in a variety of activities, the most notable ones being: a) case consultations; b) drafting ethics-related guidelines and policies; and c) training of healthcare staff employed in the institution in clinical ethics. However, clinical ethics consultation services and moral case deliberation as separate activities have also been developing. ² If we think that bioethical reflection and ethics support services should be integrated into the everyday healthcare practice, CECs are a very relevant institutional setting for these purposes. It is therefore surprising why CECs and, more generally, clinical ethics infrastructure/ethics support services are developing rather slowly and do not receive sufficient support from European countries and healthcare institutions. ¹²

Overview of CECs and Clinical Ethics Infrastructure Development

Let us make a short overview of the situation of CECs and ethics support services in different countries. In Norway, the recommendation to establish CECs came from the Ministry of Health and Social Affairs in 2003. By 2009, 37 such committees were established in the country. ⁸ In Germany, the...