Health Ethics Committee Toolkit

Transcription

1 Health Ethics Committee Toolkit Part Two: Consultation

2 Information about this resource and others can be accessed via the Manitoba Provincial Health Ethics Network (MB-PHEN) website at Manitoba Provincial Health Ethics Network Reproduction is prohibited.

3 TABLE OF CONTENTS Purpose and Overview... 5 How to Use this Toolkit... 6 Section One... 8 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role...8 Introduction... 8 Key HEC Roles/Functions: Building Competencies... 9 Education and Promotion of an Ethical Climate... 9 Policy Review and Development Approaches to Review and Writing of Policy: Policy as Education Activity for HECs! Healthcare Ethics Consultation (HCEC) Firm Foundations for HCEC: Have you Built Them? Leadership Support Membership HEC Establishment/Integration Expertise/Ethics Knowledge A Consideration of the Core Competencies for Healthcare Ethics Consultation (HCEC) Basic Ethics Knowledge and Skills for HCEC The Use of Frameworks for Ethical Decision Making Advanced Ethics Knowledge and Skills for HCEC Re: Credentials and Role Clarification: The Emerging Discourse Section Two Getting Organized: Establishing Clear Objectives and Processes for Healthcare Ethics Consultation (HCEC) Defining the Objectives of your HEC s HCEC Role Providing General Education Offering Explicit Ethics-Based Analysis Mediation/Facilitation/Consensus Building Presenting Carefully Considered Ethics-Based Recommendations Treading Carefully: The Issue of Legal Liability What will the HCEC Process Look Like? Intake Deliberation Documentation Who Should be Involved in Consults? Advantages of Sub-Committee Disadvantages of Sub-Committee Single Consultants Off-site and Distance Consultations How will the HCEC Service be Evaluated? Policy for the HCEC Role/Function References... 40

4 Section Three Resources Stocking Your HEC Library: Some Suggestions! General Resources for HECs Books Articles Selected Special Topics in Healthcare Ethics Selected Consultation Resources for HECs Books Articles Examples of Ethical Decision Making Frameworks/Tools Selected HEC and HCEC Toolkits Relevant Legislation for HECs Professional Codes of Ethics Standards Policies Healthcare Ethics Websites Associations and Conferences Training and Education Libraries How to Obtain Listed Resources... 58

5 Purpose and Overview ~ 5 ~ PURPOSE AND OVERVIEW Welcome to the Health Ethics Committee Toolkit Part Two: Consultation. The purpose of this toolkit is to support Health Ethics Committees (HECs) as they work to develop competencies and processes related to the role/function of healthcare ethics consultation (HCEC) 1. Over the past few decades, HCEC has emerged in response to needs voiced by health practitioners, patients and families for assistance in addressing the ethical issues they encounter in the process of providing and obtaining health care. This has been attributed to the increasing complexity of patient care such as emerging technologies, large healthcare teams and diverse professions, as well as competing interests in healthcare and moral diversity in our society. These ethics issues have the potential to impact the lives of the involved parties in significant ways and can be complex and at times, not easily resolved. HCEC may be sought to help with identifying, analyzing and evaluating possible solutions. Today s HEC typically has a wide scope and when the membership is well prepared, it can be positioned to consider many of the ethical issues that may be raised in a site, program or region. HECs are ideally, a multidisciplinary forum with the goal of thoroughly and systematically exploring, discussing and debating ethical issues. In our modern healthcare context, they typically have little or no formal decision-making authority. Their primary role is to support decision-makers, not displace them. It is, however, important to appreciate that any opinions or recommendations provided by the HEC can carry significant weight in the clinical setting. For this reason, a HEC must ensure that it has the necessary skills and processes in place if it is to competently take on the complex responsibility of HCEC. Indeed, consultation as a HEC activity when done well can be very valuable. However, this role/function has the potential to invoke a number of concerns in the clinical, ethical, policy, and legal realms because it takes place within the context of relationships within and between recipients of care, their families and various groups of health care providers, administrators, institutions and the community. In light of these concerns, a knowledgeable, thoughtful and systematic approach 1 We follow the ASBH Task Force s suggestion that the term healthcare ethics consultation (HCEC) is a more descriptive term because it refers to the full scope of ethics consultations. This necessarily implies that appropriate knowledge/expertise within any of the subspecialties should be available within your HEC membership in order to competently provide consultation services where there is subspecialty overlap. There can be considerable overlap of subspecialties (i.e. clinical ethics, organizational ethics and professional ethics) and while we should work towards integrating ethics across subspecialties in a site, program or region, it also needs to be appreciated that there is considerable specialized knowledge within each of these subspecialty areas.

6 ~ 6 ~ Health Ethics Committee Toolkit Part Two: Consultation to this activity is absolutely necessary. As Bashir Jawani 2 has cautioned, the consultative role/function should be undertaken only when a HEC is adequately prepared, because it has the potential both for doing immense good and harm (p. 20). HOW TO USE THIS TOOLKIT If you have not already done so, it is highly recommended that you first review Health Ethics Committee Toolkit Part One: Getting Started which was designed to provide guidance with the establishment and integration of a HEC into healthcare sites, programs and regions. HECs can vary from institution to institution along significant dimensions such as the number and qualifications of members, types of activities performed, the visibility of those activities and their perceived quality and usefulness. The effectiveness of a HEC depends in large part on whether it is fully integrated into the functioning of the site, facility, or region. This document, Health Ethics Committee Toolkit Part Two: Consultation is intended to support Health Ethics Committees (HECs) as they develop competencies and processes related to the role of ethics consultation. Section 1 will begin by providing an overview of the common roles/functions performed by HECs; namely education, policy review and consultation. It will discuss some of the necessary foundational ingredients that HECs should have in place before they consider taking on the healthcare ethics consultative (HCEC) role/function. Section 2 will outline the importance of clearly defining the consultation objectives as well as the key procedures and processes for intake, deliberation and documentation. A discussion of various consultative models, along with their advantages and disadvantages will also be included. Consideration will also be given to how consultations might be evaluated. Section 3 contains a listing of some examples of reading and resources for your HEC as you work to build competencies. It is highly recommended that HECs obtain and review the following two recent publications in conjunction with the use of this toolkit: The Report of the American Society for Bioethics and Humanities Core Competencies for Healthcare Ethics 2 Bashir Jiwani s An Introduction to Health Ethics Committees: A Professional Guide for the Development of Ethics Resources (2001) is acknowledged as an important reference and inspiration for this toolkit. The Provincial Health Ethics Network of Alberta (PHEN), is also acknowledged for their extensive bioethics resources which includes A Manual for Ethics Committee Members (2005) which has also serves as inspiration and a resource for both Part One and Part Two of this Toolkit.

7 Purpose and Overview ~ 7 ~ Consultation (2011) as well as their publication, Improving Competencies in Clinical Ethics Consultation: An Education Guide (2009) which can be ordered via the ASBH website These documents are important educational resources for HECs at all stages of their development. They provide an excellent education benchmark for HECs in their early stages as well as providing guidance to the more mature HECs with regard to the recommended core competencies for the consultative role/function.

8 SECTION ONE BUILDING FIRM FOUNDATIONS TO SUPPORT THE HEALTHCARE ETHICS CONSULTATION (HCEC) ROLE INTRODUCTION According to Gaudine et al. in their 2008 survey of Canadian acute care hospitals, 85% of their sample indicated that they had a clinical ethics committee. This demonstrates a gradual increase compared to previous surveys conducted in 1984 (18%) and 1989 (58%). While there is still wide variation in size and composition, fewer administrators or board members and more bioethicists and lawyers are now sitting on these committees. Community representatives are included with increasing frequency as well. This change in emphasis in the membership may reflect the move to a more multidisciplinary and integrative approach to ethics. Further, it may also reflect the recognition that the activities in which HECs participate require members to be prepared with adequate perspectives, knowledge and competencies. It is significant to note that respondents in this survey expressed the need for special training for their committee members, with almost 75% reporting the need but less than half actually receiving it (p. 133). Consistent with previous studies, the majority of committees reported that their role was primarily advisory, with 94% indicating that their decisions were not binding (p. 136). While today s HECs may not have formal authority to make decisions about potentially complex, multifaceted ethical issues, their recommendations can carry significant weight. It, therefore, required more than good intentions and enthusiasm; it requires particular knowledge and skills (Aulisio, 1999). In Health Ethics Committee Toolkit Part One: Getting Started it was emphasized that HECs should work to have a strong vision/purpose, which makes clear their roles/functions alongside careful consideration of committee competencies. The three key activities which are commonly associated with HECs are: 1. Education and promotion of an ethical climate 2. Policy development and review 3. Consultation

9 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role ~ 9 ~ In addition to the HEC defining for itself which of these activities it will take on, in each of these activity domains, it is important that committee members clarify their goals and assess how they might attain them effectively. As Judith Wilson Ross et al (1993) observed, It is one thing to say that ethics committees should conduct education on ethical issues, recommend policies that are ethically important and review cases with respect to ethical issues. It is another thing to determine exactly what activities can fulfill that mission. New committees tend to restrict themselves to self-education; after completing that phase, they devote time to educating others, to hearing cases (often only retrospectively), and to writing policies that are requested. More mature committees tend to broaden their notion of the issues identified as ethical (p.11). While a HEC s goals may not be to resolve all ethical issues within the site, program or region, it should work in its early stages to develop an awareness of such issues. In a process of maturing, HECs can gradually make more contributions by working to expand the understanding of ethics in healthcare. HECs should take the time to gradually build expertise and competency within their membership and take on roles/functions with this in mind. It is wise to heed Bashir Jiwani s warning: In my experience, ethics committees that have tried to take on all three of these functions (that would be most committees), have found this very challenging, if not overwhelming I would strongly recommend that HECs ensure that whatever roles they do take on, they do them very well. If a committee has limited resources and/or limited experience, it may be worthwhile limiting the committee s mandate to a set of responsibilities that are within the abilities of the committee, and that the institution/organization that the committee belongs to can reasonably hold the committee accountable for (p. 36). KEY HEC ROLES/FUNCTIONS: BUILDING COMPETENCIES EDUCATION AND PROMOTION OF AN ETHICAL CLIMATE In the Health Ethics Committee Toolkit Part One: Getting Started, education and the promotion of an ethical climate were emphasized as valuable activities of effective HECs. It is important that members of HECs continuously work to improve their own knowledge of healthcare ethical issues. While not all the members of a HEC necessarily need to have extensive training in philosophical ethics, (having some of your membership with such training

10 ~ 10 ~ Health Ethics Committee Toolkit Part Two: Consultation is definitely advisable since they can help guide the committee) members should work to pursue further education in this field to complement the particular perspective they bring to the committee. If you are in the early stages of your HEC development, then education of HEC membership should be a priority in your work plan. Alongside HEC membership education, the delivery of various forms of healthcare ethics education by the HEC members to healthcare providers, institutional staff, patients, clients, residents, families, institutional and regional administration and the public are important HEC roles/functions as well. If the HEC will provide ethics education, then clear goals and/or strategies should be established as part of their work plan. The HEC membership needs to think not only about to whom education should be directed, but in what format and delivery method. As Bashir Jiwani has suggested, it is helpful to ask the following questions as you work to set these goals: Do HEC members have sufficient expertise to teach ethics? Can they improve their knowledge-base through continuing ethics education? What resources or opportunities can be used and/or developed to accomplish these competencies and committee goals? HEC members do not necessarily have to be ethics experts. As a consequence of participating on a thriving HEC however, they should eventually achieve some level of expertise in the field of healthcare ethics. New members should be oriented to basic issues in healthcare ethics, moral rules, principles, relevant legislations and policy. Member education should be ongoing! A HEC whose membership has been provided with education will be better prepared to deal with complex issues and have greater credibility within their site, program or region. HECs should also work diligently to clarify that their role is intended to be supporting rather than displacing decision-makers. Taking such an approach even in the education and policy involvement stages of HEC development helps to set the tone for the approach that the HEC will take if it offers consultation services 3. It is important that committees work to establish credibility through appropriate and diverse membership and the development of clear reporting structures and processes. For example, the development of a strong communication strategy is recommended to achieve not only visibility and accessibility, but to communicate an effective process by which staff in your site, 3 The ASBH Core Competencies advocates an ethics facilitation approach in the healthcare ethics consultation (HCEC) role or function. They assert that ethics committees can best support decision-makers by helping them to identify and analyze the nature of value uncertainties and facilitate the building of a principled ethical resolution (2011, 0. 7).

11 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role ~ 11 ~ program or region might bring forward issues or concerns that they perceive as ethical in nature. Leadership, in collaboration with their HEC, should endeavor to develop guidelines/strategies for the triaging and management of ethics issues and concerns. Communication maps/algorithms can be of great help in guiding staff in this regard. The HEC can play an important role in the promotion and publicity of these processes. The use of selected ethics decision-making frameworks also helps to ensure issues are effectively brought forward and examined in a consistent and systematic manner. This not only provides structure to discussions and deliberations, but it also helps staff to determine when additional ethics expertise may be needed to be consulted. This will be discussed in more detail later in this document. A related activity of a HEC is the promotion of an ethical climate and certainly education activities are an important aspect of this activity. HECs should work actively to integrate ethics into their facility, program or region. This necessarily involves working to raise awareness amongst healthcare providers and staff of the ethical nature of their work. The task of educating those who work in the site, program or region can be challenging but can also be very rewarding! To do this effectively, HEC membership should become familiar with the important ethical issues within health care generally speaking, such as withholding life sustaining treatment, DNR/DNaR orders and resource allocation, but also need to be sensitive to ethical issues that can arise within and between groups of providers and other hospital staff. Indeed, all healthcare contexts can benefit from the HEC membership working to encourage and facilitate opportunities for thoughtful, careful, systematic examination of the values and beliefs that underpin attitudes, decisions and actions. This is why a multidisciplinary committee is especially helpful as it can provide the necessary perspectives to best inform approaches to be taken to accomplish this goal (Jiwani, p. 20). POLICY REVIEW AND DEVELOPMENT Another role/function of a HEC is the examination of ethics-related policies and guidelines 4. It is important that before taking this on, that your HEC assess its goals for policy development and review. Most policies or procedures created by a site, program or region concern the conduct of individuals or the attitudes/approaches the organization wants to adopt in various situations. Such policies can have ethical dimensions because they affect the way we engage with one another and they reflect the values of the site, program or region. Policy review by a HEC can help identify and 4 Interestingly, Gaudine et al. (2008) found less of an emphasis on functions related to the review of policies and procedures than reported previously; however it was still identified as one of the key functions.

12 ~ 12 ~ Health Ethics Committee Toolkit Part Two: Consultation clarify the ethical dimensions of a particular guideline or policy and by doing so, encourage discussion about how the ethical issues identified ought to be addressed. Careful consideration should be given to the question of who is to be involved and how this will be performed. For example, the HEC might collaborate on some policies and take over development of others, depending on the particular policy in question. These are excellent opportunities for individual committee members who also might bring relevant professional experience to also offer relevant subspecialty (such as organizational ethics, professional ethics, quality assurance, safety) as well as ethics expertise. This is also another way in which HECs can ensure that ethics is incorporated and integrated throughout all hospital departments. Policy writing can also be seen as part of a more general educational effort on the part of the HEC to explain and reflect the stated values of the site, program or region. As Wilson Ross et al points out, it is therefore also within the HECs purview to observe where practices, policies, and mission have become disconnected or inconsistently applied and to suggest to some other group in the organization that the issues should be pursued (p. 70). There may also be some policies that be best drafted by the HEC because of the explicit ethical nature of the policy issue being considered. As Bashir Jiwani has recommended some policies (if not most) are best drafted elsewhere and then reviewed by a HEC. Again, it is very important that the HEC be clear about how well it can take on the task of addressing policy issues because requires both the time and the expertise if it is to be done well (p. 32). APPROACHES TO REVIEW AND WRITING OF POLICY: There are a number of approaches a HEC might take to writing policy, and for an extensive treatment of this topic, HECs are encouraged to consult Wilson Ross et al. (1993) pp as a resource on this topic. The approaches are summarized below: Full committee participation In this approach, the whole committee spends time deliberating on the content and wording of the policy. This approach is more time consuming since it involves the entire HEC. The advantage, however, is that the whole committee understands and has ownership of the policy. Sub-committee (standing or ad hoc) A standing/ad hoc sub-committee may be formed to organize all of the policy review and writing duties for the HEC. Members of the sub-committee draft and revise policy with input from the rest of the HEC. An ad hoc sub-committee might be put together specifically to address the development of a particular policy. This is often beneficial because specific members with most interest/expertise on the issue in question can be assigned to the task.

13 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role ~ 13 ~ Involve a Clinical ethicist/ethics specialist A HEC needs to consider the fact that sometimes it might be prudent to consult/hire and ethics specialist to do a review of the various ethical issues that are raised by a policy in question. This research can be used to inform the work of the relevant committee or sub-committee that is reviewing or drafting the policy in question. POLICY AS EDUCATION ACTIVITY FOR HECS! As Bashir Jiwani has observed, [o]ften committees are good at creating policy, but not very good at educating staff and/or the patient/client/resident populations about what the policies are and why they have been developed. It certainly makes sense that involving those individuals who will be affected by the policy in the development process increases the chances for a superior policy while also providing opportunity for education. Further, mechanisms should be in place to ensure that new staff are introduced/oriented to such policies. As he points out) acknowledging Michael McDonald s work in this area), education around policy should be seen as a dynamic process, not a static one-off event (p. 35). HEALTHCARE ETHICS CONSULTATION (HCEC) The main purpose in a HEC offering healthcare ethics consultation (HCEC) is to help patients, staff and others resolve ethical concerns in the healthcare setting. It is to work to improve the quality of health care through the identification, analysis, and resolution of ethical questions or concerns. As the ASBH Task Force Core Competencies report has suggested, this general goal is more likely to be achieved if consultation accomplishes the intermediary goals of helping to: Identify and analyze the nature of the value uncertainty or conflict that underlies the consultation. Facilitate resolution of conflicts in a respectful atmosphere with attention to the interests, rights and responsibilities of all those involved (2011, p. 3). The discussion up to this point has emphasized the importance of HECs taking the time to build their collective education and experience before taking on the role/function of HCEC. Depending on the setting in which a HEC is situated, some consultations may involve questions which traverse the full range of healthcare ethics subspecialties such as clinical ethics, organizational ethics, professional ethics, business ethics, education ethics or research ethics. While there is value in the trend toward integrating ethics across all subspecialties within a site, program or region, this also implies the potential for a very wide scope. It is important to appreciate that clinical ethics consultation activities in particular, have the greatest potential to

14 ~ 14 ~ Health Ethics Committee Toolkit Part Two: Consultation cause harm if the HEC is inadequately prepared in terms of knowledge and skills. As the ASBH task force (2011) has noted: Although many of the core competencies identified in this report overlap with those needed to address ethical concerns and conflicts in other subspecialties, it is in the clinical subspecialty where unqualified HCE consultants have the highest potential to directly harm patients and families (as well as others involved in a consultation). Moreover, the Task Force considers clinical ethics case consultation in which the patient s medical ( case consultation ) to be where the stakes are often highest (p. 3). The consultative role/function should be undertaken only when a HEC is adequately prepared, because it has the potential both for doing immense good and harm (Jiwani, p. 20). With this in mind, before your HEC decides to take on the HCEC role, they should thoroughly assess the following foundational elements. An honest assessment will allow you to best decide whether you are ready to consider the consultative role. FIRM FOUNDATIONS FOR HCEC: HAVE YOU BUILT THEM? LEADERSHIP SUPPORT A HEC will not flourish in any of its roles/functions without the support of its site, program or region s leadership. It is the leaders who establish organizational priorities and allocate resources to support these priorities. Unless leaders support and are perceived to support, the ethics consultation function will be compromised. Leaders at all levels and throughout the organization can support the HEC and its services in several ways, such as having a clear understanding of the scope and roles of their HEC, directing others to utilize the HEC services, and routinely recognizing staff for their HEC involvement. Leaders of health care facilities as well as those who will be responsible for HCEC should ensure that your consultation service has the requisite

15 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role ~ 15 ~ expertise. Individual members of the service may have different competencies/expertise, and some skills may be represented by only one individual. It is important that leaders appreciate the need for, and ensure that the full set of core competencies for ethics consultation (which will be discussed in more detail shortly), be represented in their HEC if they are to take on the HCEC role/function. Facility leaders should also ensure that adequate staff time is available for HCEC activities. Ethics consultation can be time consuming and individuals responsible for this service need dedicated time to do this work. It is important that those who participate in HCEC, especially if they hold other primary roles within the site, program or region, have a clear understanding with their leadership about how much time this activity actually involves. The time required will vary depending on the types of consultation handled. HCEC as a role/function should not be viewed as an optional or voluntary activity, but as an assigned part of an HEC member s job that requires dedicated time. Leaders should also ensure that individuals who perform ethics consultation have ready access to needed resources such as workspace, clerical or data entry support, library materials, and ongoing training and/or education. MEMBERSHIP Of course, also key to the success of a HEC in a general sense, are the individual members who sit on a HEC. A strong, knowledgeable and well respected committee chair is critical to HEC survival. Apart from supporting the operations of their committee they function as a liaison between the HEC and the rest of the site, program or region. While ethics committees of the past were often made up entirely of physicians, it is now well appreciated that a committee with such a limited range of members is unlikely to have a varied and broad enough lens for the most optimal exploration of ethical dilemmas. Nurses, social workers and other health professionals are distinct professionals who adhere to specific codes of ethics and confront dilemmas that can differ from those that physicians face. Ethnic and cultural diversity is also important within the HEC because a significant number of consults stem from differences in religious practices and culture expectations (Post, Blustein & Dubler, 2007, p. 2). The membership stability of HEC is important as well. The HEC cannot build upon the experience and training of its membership if it is constantly changing. Therefore, poor meeting attendance and attrition needs to be addressed. As Part One of the toolkit emphasized, the committee needs to address every aspect of its functioning from who chairs meeting, how they are run, and whether goals are clear, realistic, useful and adequately met. It is important to have all these processes well established before taking on the HCEC role/function.

16 ~ 16 ~ Health Ethics Committee Toolkit Part Two: Consultation HEC ESTABLISHMENT/INTEGRATION Along with having a clear reporting structure, the HEC should be well situated within the overall structure of their site, program or region. As previously mentioned, a HEC will not flourish and may not even survive in a useful way unless it has the support of leadership and staff. A HEC that can show that it is relevant and that its planned services are important and effective is more likely to win initial and sustained support than one that cannot define its goals or its accomplishments. The task of clearly defining goals and seeking more effective ways to attain them is a KEY aspect of earning and deserving support from your leadership. It is important to appreciate that support does not only come from leadership. A HEC must gain a broad base of support from staff in different departments and roles. The best way to earn support is to provide a valuable service! A HEC that is actively seeking out ways in which it can be helpful and provides useful assistance in addressing ethical problems will enjoy support. A successful healthcare ethics consultation service develops and maintains positive relationships with various individuals and programs that shape the site, program or regional ethical environment and practices. A fully integrated healthcare ethics consultation service responds directly to a wide range of ethical concerns faced by the site, program or region including concerns involving shared decisionmaking with patients, ethical practices in end-of-life care, patient privacy and confidentiality, professionalism in patient care, and ethical practices in resource allocation. By establishing effective working relationships, a fully integrated HEC carries out its activities in coordination with other offices and programs that address ethical concerns in other domains. Thus, a HEC is best positioned for success in HCEC if has a history of seeking out opportunities to share activities and skills and identify and work to achieve mutual goals with other professionals in their site, program or region. EXPERTISE/ETHICS KNOWLEDGE HECs perform an important and unique function within their site, program or region by virtue of the fact that they possess some expertise in the area of healthcare ethics. While not all members need extensive philosophical training in ethics, every HEC should ideally have among its members, someone with some formal background or training in this area that is familiar with relevant ethics literature and can educate or direct other committee members to current and relevant resources in the fundamentals of healthcare ethics. Members should also critically look into their own value systems biases. As Jiwani pointed out, HECs can be seen as microcosms of the site, program

17 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role ~ 17 ~ or region and thus need to develop an understanding of the values they espouse personally and on behalf of their site, program or region (p. 46). As a consequence of participating on a thriving ethics committee, all HEC members will eventually achieve some level of expertise/knowledge in healthcare ethics. It is important that this expertise be nurtured. New members, depending on their past education and experience, must be oriented to the basic issues in health ethics. A HEC whose members have been exposed to extensive education will not only be significantly better prepared to deal with ethical issues, but will often also acquire greater credibility within their site, program or region which is an important component of an effective and well-functioning HEC. Over time, members should become familiar with basic ethical theories and their respective strengths and drawbacks. Members should become adept at understanding these theories without being dogmatically driven by any one of them. This is to ensure that issues can be discussed in a balanced way and that an environment is created where solutions to difficult problems can be approached with openness. Members should also become familiar with the various issues upon which consensus has been reached in Canadian society such as informed consent in clinical practice, the idea of personal or advance directives and surrogate decision-making policy (Jiwani, p. 46). HEC membership should not only be multi-disciplinary, but also work towards possessing a broad range of skills and knowledge. The American Society for Bioethics and Humanities report (first published in 1998, and recently revised in 2011) Core Competencies for Health Care Ethics Consultation is a very important resource for HECs, whether they are currently participating in HCEC or simply interested in learning more about the role/function. While it is specifically geared to the task of describing the necessary core competencies for HCEC, this document is also a useful educational benchmark for HECs that are in their earlier stages of development. This resource is relevant for: Those individuals that perform HCEC Educational programs that help prepare individuals, teams, or committees to perform the HCEC Healthcare organizations that offer HCEC services (2011, p. 1)

18 ~ 18 ~ Health Ethics Committee Toolkit Part Two: Consultation It is important to note that in the HEC context, the skills and knowledge described in the Core Competencies document need not all be present in one individual. Indeed, a great benefit of a HEC structure is that the collective expertise can surpass that of any one person. HECs that function at a high level, monitor their strengths and gaps in expertise and skill, and address those gaps by adding skilled members and/or encouraging continuing education for individual members and the group as a whole. In addition to ongoing education for individual members, a HEC can also devise an orientation manual and a set of educational expectations for new members. Such a manual might include a list of useful reference works, and journals in medical ethics, as well as copies of relevant institutional policies. Mentorship by a senior committee member for members new to the committee can be helpful as well. The American Society for Bioethics and Humanities; document Improving Competencies in Clinical Ethics Consultation: An Education Guide (2009) is another helpful document to help address the various core knowledge areas that HECs should have in place before taking on HCEC. Section 3 of this toolkit also contains books, articles and other resource suggestions to help support the ongoing education of your HEC membership. A CONSIDERATION OF THE CORE COMPETENCIES FOR HEALTHCARE ETHICS CONSULTATION (HCEC) As the ASBH Core Competencies (2011) report has pointed out, ethics consultation can be defined as a set of services provided by an individual group in response to questions from patients, families, surrogates, healthcare professionals, or other involved parties who seek to resolve uncertainty or conflict regarding value-laden concerns that emerge in healthcare 5. While healthcare providers all, by the nature of their roles, engage in ethical decision-making as part of their everyday work, consultants differ in that they have been assigned by their site, program or region the distinctive role/function of responding to specific ethical concerns and questions that arise in the delivery of health care. This is often performed in conjunction with other healthcare ethics activities that have already been established as HEC roles/activities such as educating of healthcare professionals and involvement with policy development and/or review. 5 With regard to the term value, these authors clarify that these values are embedded in many different domains (law, morals, professional practices, various communities, individual conceptions of the good). They use this term value as a general term to capture the various normative dimensions of issues that emerge in health care. Value uncertainty or conflict often arises because of core values from these different domains. (p. 2).

19 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role ~ 19 ~ There are a number of concerns that can arise in the healthcare setting that the HCEC offered by your HEC must be prepared to address. Certainly, any time there is uncertainty, a perceived conflict of values or questions raised about appropriate decisions/actions, this presents an opportunity for HECs to be consulted. It is important to appreciate that these everyday questions confronting patients, families and healthcare providers have become increasingly complex and therefore the stakes can be high. Because these questions surround issues such as professional/personal obligations, resource allocation and beneficence and non-maleficence in the provision of clinical care, it can result in staff experiencing moral distress. This is why it is so important that competent HCEC is available to those who are requesting the help (ASBH, p. 6). 6 Type and/or Scope of Concerns HEC members may need to address: Shared decision-making with patients Ethical practice in end of life care Ethical practice at the beginning of life Patient privacy and confidentiality Professionalism in patient care Ethics practices in resource allocation, business and management Ethics practices in the everyday workplace Ethics practices in research 7 (ASBH, 2011, p. 4) 6 Again, it is highly recommended that HECs obtain their own copies of the ASBH Core Competencies publication as well as Improving Competencies in Clinical Ethics Consultation: An Education Guide (2009) as well as the afore mentioned Core Competencies for Healthcare Ethics Consultation (2011) as these publications can help to guide HEC membership education as they work towards the HCEC role/function. 7 HECs may be in an excellent position to review REB approved research in terms of its feasibility within their particular regional context.

20 ~ 20 ~ Health Ethics Committee Toolkit Part Two: Consultation BASIC ETHICS KNOWLEDGE AND SKILLS FOR HCEC Individual consultants who perform HCEC must have advanced healthcare ethics knowledge and skills across multiple areas. When the HEC sub-committee or full committee model is used, this requisite knowledge and skills might be distributed across the various members of the group. Of course, the greater the collective expertise in an ethics consultation service, the more useful and effective that service will be. Although basic knowledge and skills may be developed through practical experience, development of advanced knowledge and skills generally requires a more rigorous and systematic approach to learning (i.e. formal coursework and in-depth reading, graduate degrees and supervised practice with expert feedback). The ASBH Task Report Core Competencies identifies three categories of skills for HCEC, namely assessment and analysis, process and interpersonal skills. Some of the skills noted in Core Competencies (2011) are considered basic abilities and skills for HCEC, and others are considered advanced. The following have been recommended for common and straightforward consultation 8 and may also represent a reasonable skill benchmark for HECs if they are considering being involved in the HCEC role/function. Some selected examples 9 of basic competencies are: Assessment and analysis skills Identify the nature of value uncertainty/conflict and analyze a values conflict Access relevant ethics literature, policies, guidelines and standards and to be able to clarify relevant ethical concepts Process skills Communicate and collaborate with other responsible individuals, departments or divisions Effectively facilitate meetings 8 The Task Force acknowledges that the distinction between basic and advanced skill is necessarily vague and somewhat arbitrary. They suggest that level descriptors in post-secondary education may provide some insight into this distinction. They also cite Benner, PE (2000). From novice to expert. Upper Saddle River, NJ: Prentice Hall and Pape D. & Manning, S (2006). The educational ladder model for ethics committees HEC Forum 18(4), Please see the ASBH Core Competencies (2011) and the Education Guide (2009) for more discussion and guidance on this question. 9 Please consult the ASBH Core Competencies for Healthcare Ethics Consultation (2011) for a full discussion of these basic competencies.

21 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role ~ 21 ~ Effectively document and communicate HCEC activities Interpersonal skills Listen and communicate well and elicit the moral views of others Facilitate discussion and mediation of ethical conflicts THE USE OF FRAMEWORKS FOR ETHICAL DECISION MAKING Related to the development of ethical assessment and analysis of skills, is the use of frameworks for ethical decision-making. A significant part of ethical enquiry is the systematic and organized examination of the values that guide our decisions. Frameworks for ethical decision-making are tools that can be used to gather and process the relevant facts in an analysis of the ethical dimensions of a particular situation. There are many examples of such tools and your site, program or region can benefit by identifying specific frameworks for use in consistent and systematic exploration of ethics issues in the clinical as well as organizational healthcare realm. Some frameworks may be more suited to acute care clinical contexts, while some will be focused on organizational issues, community health issues or personal care home issues. Jonsen, Siegler and Winslade s Four Topics Method 10 for example, is particularly helpful for working through the various aspects of acute care clinical ethics issues/dilemmas. Questions brought forward for HCEC often overlap into other subspecialty ethics areas, such as organizational ethics. A HEC is best positioned if it is familiar with frameworks that are best suited for thorough exploration of the particular dilemma and its particular subspecialty focus. Section 3 Resources of this document will provide some examples of frameworks that HECs may want to explore depending on their context. Once decision-making frameworks are selected as resources for HEC, intentional and frequent practice using these frameworks is the best way to become comfortable using them. Practice will also help to identify gaps in their usefulness for your particular site, program or region. It is advisable that members of a HEC that will be taking on the HCEC role to practice using these frameworks retrospectively, through various case studies to gain confidence and expertise. Educating other staff throughout your site, program or region about the use of selected frameworks for ethical decision-making is also helpful in working towards integration of systematic and consistent approaches to perceived ethics issues by all staff who encounter 10 Please see Jonsen, AR, Siegler, M, Winslade, WJ (2010). Clinical Ethics A Practical Approach to Ethical Decisions in Clinical Medicine. 7th ed. McGraw-Hill.

22 ~ 22 ~ Health Ethics Committee Toolkit Part Two: Consultation them. These frameworks are not just for HECs and their staff who encounter them. These frameworks are not just for HECs and their members but are helpful decision-making frameworks for all healthcare providers since these frameworks seek to enhance ethical decision-making by structuring the decision maker s approach in an ordered fashion. Use of a decision-making framework helps to get the decision-maker to think from the various stakeholders perspectives and refer them to guiding principles and values in order to help in the achievement of a reasoned conclusion. It is important to appreciate however, that frameworks in and of themselves, cannot make the decision; they are, essentially tools that stimulate thought and facilitate the decision-making process. ADVANCED ETHICS KNOWLEDGE AND SKILLS FOR HCEC According to the ASBH Task Force, at least one individual in a HCEC service must have advanced knowledge and skills required to perform complex ethics consultations, and at least one individual (often the same individual) must have the knowledge and skills to effectively oversee and run the services itself (p. 24). While basic knowledge can be thought of as a general, or introductory, familiarity with the area specified, advanced knowledge is a detailed grasp of the area specified: (p.26). As the ASBH Task Force has pointed out, there are multiple ways that one might come to have basic knowledge. This includes regional health ethics education programs, intensive courses, conference attendance, in-service attendance, reading relevant literature. There are a number of excellent websites which provide direction and access to resources as well (please see Section 3 for some examples). There are also excellent tools that have been developed based on the ASBH Core Competencies which help HECs assess their current level of both basic and advanced knowledge of skills. 11 Advanced knowledge is developed through formal academic preparation through graduate degree programs in various subspecialty domains of HCEC. The nine knowledge areas identified by the ASBH Task Force for ethics consultants or HEC consultancy teams are: 11 The Veterans Health Administration National Center for Ethics in Healthcare has adapted the ASBH basic and advanced skill and knowledge recommendations into an Ethics Consultant Proficiency Assessment Tool. It is an excellent way to assess individual HEC membership skills and knowledge with the goal of developing individualized professional development in the realm of HCEC.

23 Building Firm Foundations to Support the Healthcare Ethics Consultation (HCEC) Role ~ 23 ~ 1. Moral reasoning and ethics theory, including familiarity with a variety of approaches to ethical analysis, such as principles-based and casuist (case-based). 2. Bioethical issues and concepts in the subject areas of shared decision-making, end-oflife care, privacy and confidentiality, professionalism, resource allocation, research, organizational ethics and ethics of the everyday workplace. 3. Health care systems as they related to HCEC 12 such as federal and provincial funding systems, health policy, healthcare organization administration, REB policy and guidelines for the region, resource allocation and so on. The HCEC should be able to access an individual with advanced knowledge if it is relevant for a particular consultation. 4. Clinical context as it related to HCEC. Clinical literacy such as the ability to understand medical terms, and descriptions of disease processes, treatments and prognoses; familiarly with medical decision-making, current or emerging technologies, and the different roles, relationships and expertise of health care providers. 5. Knowledge of the site, program or region relevant to HCEC such as mission statements, organizational structure, decision-making processes or frameworks, range of services, medical record system, etc. 6. Knowledge of the site, program or regional policies such as informed consent, withholding and withdrawing life-sustaining treatment, pain management and palliative care, advance directives, surrogate decision-making, healthcare agents, durable power of attorney, DNR/DNAR, death by neurologic criteria/determining death, medical futility, confidentiality and privacy, HIV testing and disclosure, organ donation and procurement, human subjects research, conflicts of interest, disclosure of adverse events or errors, admissions, discharge and transfer, impaired professional, and whatever is relevant to HCEC. 7. Knowledge of cultural and religious issues, including how culture, religious tradition, ethnicity, beliefs, and perspectives shape both providers and patients responses to illness, death, and medical treatment. 8. Health care environment including mission statements, organizational structures, range of service and points of care, and policies (e.g. informed consent, advance directives, privacy and confidentiality, organ and tissue donation, medical records). 12 These have been altered to reflect the Canadian context.