The Cambridge textbook of bioethics

ethics resource leaders with training in ethics (‘‘spokes,’’ e.g., clinical staff), who help to build local ethics awareness, knowledge, and skills in clinical settings across the organization (Figure 41.1).

One of the strengths of this model is its adaptability to different organizational contexts, as well as its flexibility in operational design. For example, within the JCB partnership network, the spokes at one acute care hospital are physicians in three core clinical areas (critical care, oncology, family medicine), a portion of whose salary is paid by the organization for the purpose of providing local ethics support. By contrast, one rehabilitation hospital has professional practice staff (e.g., social workers, physiotherapists) as spokes, whose local ethics roles are written into their job descriptions as protected time. Some organizations within the JCB network augment the model with a ‘‘clinical ethics forum,’’ made up of the hub and spokes, a senior management representative, and other key stakeholders (e.g., patient/family representatives, board members, quality and risk managers, chaplains). In addition to providing an important community of support for the hub and spokes, the forum is a mechanism for developing strategies to

improve and monitor clinical ethics effectiveness and for reinforcing ethics accountability in the organization (MacRae et al., 2005).

The hub and spokes model contributes to improved clinical ethics effectiveness in three ways. Firstly, it improves ethics integration. By positioning spokes locally, ethics support is more readily accessible to staff, patients, and family members and can be more immediately incorporated into patient care decision making. Secondly, it improves sustainability. The integrated structure offers a more sustainable clinical ethics service because it does not depend exclusively on the efforts of any single individual, thereby lessening the risk of isolation and burnout characteristic of the lone clinical ethicist model. Finally, it improves accountability. Although it has generally been recognized that healthcare institutions are accountable for ethics in clinical care, this model takes an important step toward formalizing this accountability and recognizing clinical ethics ‘‘not just as the clinical ethicist’s role, but as an integrated part of everyone’s role’’ (MacRae et al., 2005).

The hub and spokes model can also be implemented across organizations. For example, the

JCB’s Clinical Ethics Group, which is made up of all of the clinical ethicists and clinical ethics fellows who work in JCB partner organizations along with members of the JCB’s leadership team, meets on a weekly basis for case review, professional development, and collaboration on creating and testing innovative clinical ethics practices. The group places significant emphasis on peer support and quality assurance, which group members describe as an invaluable component of their local clinical ethics effectiveness (Chidwick et al., 2004).

Strategy 2: leadership and management skills training for clinical ethicists

Leadership can be defined as ‘‘the process through which an individual attempts to intentionally influence another individual or a group in order to accomplish a goal’’ (Pointer and Sanchez, 2005). The hub and spokes model involves a significant shift in the clinical ethicist’s role. As the hub, the clinical ethicist’s responsibilities include providing core leadership to the integrated ethics network, mentoring and coordinating the spokes, strategic planning, and evaluating and monitoring clinical ethics effectiveness (MacRae et al., 2005). In some institutions, it may also involve budgeting, managing staff, and reporting to senior management or the board of directors. As healthcare organizations face budget constraints, many clinical ethicists face the challenge of justifying the ‘‘value-for-money’’ of their activities. Sustainability may depend in part on the clinical ethicist’s ability to influence the decision-making process, whether through a senior management champion or their own persuasiveness. Senior managers in JCB partner organizations are increasingly calling for clinical ethicists to play a greater ethics leadership role, including participation in broader organizational initiatives that have significant ethical implications for patient care (e.g., pandemic influenza planning, resource allocation). Consequently, clinical ethics effectiveness requires a certain amount of institutional intelligence (i.e., practical knowledge about how

the organization works functionally and politically), as well as leadership skills.

Clinical ethics training does not typically involve professional development in leadership or management skills. What leadership training clinical ethicists do receive tends to be informal (i.e., learning from experience) or a combination of formal mentorship by a senior manager, executive coaching, or continuing education seminars in management for clinicians. To our knowledge, there is no leadership program developed with clinical ethicists in mind. To fill this gap, the JCB developed and piloted a six-month leadership program for its affiliated clinical ethicists and clinical ethics fellows in 2005/2006. With the academic support of faculty from a local management school, the program was designed to link the classroom experience with the practical realities of ethical leadership in healthcare organizations. Classroom learning focused on three key themes: effective leadership, change management, and interpersonal skills related to networking and dealing with interpersonal conflict. Over the course of the program, each clinical ethicist conducted a leadership project in their organization under the preceptorship of his/her senior manager and with the peer advice of two or three other clinical ethicists. On the last day of the program, each clinical ethicist had the opportunity to present his or her leadership project and to receive constructive feedback from a panel of senior managers from JCB partner organizations.

Strategy 3: ethics strategic planning

The demand for ethics service is often so great and so varied that ethicists feel they must be all things to all people, which is an unsustainable objective. The JCB has developed an ethics strategic-planning process and has piloted it across eight partner organizations. The objectives of the ethics stra- tegic-planning process are (i) to develop a vision for the clinical ethics portfolio aligned to the organization’s strategic directions (mission/vision/ values), (ii) to reach agreement on focused priorities related to the vision, and (iii) to develop an

326J. L. Gibson et al.

action plan that includes clear mechanisms and indicators of effectiveness. The strategic planning process is conducted in three steps.

Step 1 is an institutional scan. The purpose of the institutional scan is to gather information about the organization’s ethics needs, the perceived effectiveness of existing clinical ethics services, and possible future directions for clinical ethics in the organization. Focus groups and interviews are conducted with a broad range of internal stakeholders ‘‘from boardroom to bedside,’’ including patients and family members whenever possible. Scan findings are collated, validated by a member check with participants, and benchmarked against leading practices in other healthcare organizations. The final institutional scan report is the key input for the ethics strategic planning retreat (in step 2).

Step 2 is an ethics strategic planning retreat. The purpose of the retreat is to draft a strategic plan, including a vision statement, three to five year priorities, and performance indicators for clinical ethics in the organization. Retreat participants include a broad range of internal and relevant external stakeholders. The final ethics strategic plan document provides a guide to yearly action planning for the clinical ethics portfolio (in step 3).

Step 3 is a yearly action plan. The purpose of the action plan is to specify key action steps, timelines, performance indicators, and accountabilities to operationalize the priorities in any given year. The clinical ethicist is accountable for developing the action plan and monitoring its implementation in consultation with the reporting senior manager and in coordination with other ethics resource leaders (e.g., ‘‘spokes’’) in the organization. The action plan provides an accountability framework for evaluating clinical ethics effectiveness on a yearly basis.

A key strength of the ethics strategic planning process is its broad engagement of institutional stakeholders. This strengthens the integration of clinical ethics by aligning clinical ethics services with stakeholders’ needs, building a sense of shared responsibility for ethics across the organization, and

creating a network of support for the hub and spokes. Moreover, by linking the clinical ethics service to the organization’s mission, vision, and values, the ethics strategic plan advances the organization’s strategic directions. Finally, it provides an explicit accountability framework for monitoring, improving, and evaluating organizational performance in relation to clinical ethics and, ultimately, for justifying a sustainable resource base.

Strategy 4: evaluation of clinical ethics services

All clinical ethics services should have explicit performance standards and a formal evaluation strategy to monitor progress, facilitate ongoing quality improvement, ensure alignment with current organizational needs and goals, and hence, enhance accountability for the organizational resources invested in the service. Clinical ethics services can be evaluated against a number of benchmarks and quality indicators, including strategic plan priorities, locally developed indicators (e.g., action plan), and/ or accreditation standards. This suggests the need for a multimodal evaluation strategy, including both qualitative and quantitative data related to shortand long-term goals of the clinical ethics service as well as to the overall goal of improving patient care.

To address some gaps in knowledge around clinical ethics effectiveness, the JCB initiated the Project Examining Effectiveness in Clinical Ethics (PEECE). The study objectives were three-fold: (i) to examine the services, structures, and activities of nine clinical ethics services in JCB partner hospitals (see Godkin et al. [2005] for a detailed review of findings related to this objective); (ii) to identify specific policies, processes, and practices stakeholders defined as effective; and (iii) to investigate stakeholders’ views on clinical ethics effectiveness. To address objectives two and three, individual interviews and focus groups were conducted with a broad range of stakeholders including senior managers, clinical ethicists, ethics committee members, clinicians, patients, and family members. Stakeholders defined clinical ethics effectiveness primarily in terms of process indicators

Strategic alignment (i.e., compliance with organization’s mission, vision, values, and goals)

Strategic focus (i.e., achievement of priorities in ethics strategic plan)

Clinical performance (e.g., patient/family satisfaction, staff satisfaction)

Professional performance (e.g., all-round evaluation, peer evaluation)

Accreditation standards (e.g., CCHSA, JCAHO)

Professional competencies (e.g., ASBH core competencies)

Leading practices from the field (e.g., institution-wide focus, peer support)

Resource benchmarks (e.g., one ethicist for every 48 intensive care beds; Godkin et al., 2005)

related to quality issues (e.g., patient-centered care, communication, inclusiveness) rather than more clinically oriented indicators such as number of hospital admissions or length of stay (Tracy et al., 2005). In addition, they saw clinical ethics effectiveness as a bedside-to-boardroom phenomenon, which should be evaluated at both the clinical and the organizational level and should include patients’ and family members’ views. A number of potential quantitative and qualitative evaluation strategies were suggested by stakeholders including, for example, global assessments of organizational culture, performance measurement tools (e.g., patient/staff satisfaction surveys, staff and board performance evaluations), and formal debriefings with affected stakeholders following clinical ethics interventions (e.g., consultation, education sessions). Based on the PEECE data and our experience with JCB partner organizations, Table 41.1 identifies key parameters, for which specific local indicators could be derived, to evaluate clinical ethics effectiveness in practice.

A key lesson learned in the clinical ethics services of JCB-affiliated institutions is the importance of incorporating a formal evaluation strategy into daily clinical ethics practice. This type of daily management of clinical ethics effectiveness can be likened to a sailor embarking on a sea journey with a clear destination in mind, a map to guide the way, and the necessary skills to steer the ship – but who must adjust course according to the wind and the sea conditions in order to reach the destination successfully. Experience shows that clinical ethics

services are more likely to be effective if the clinical ethicist has clear goals linked to the needs, values, and goals of the organization, gathers real-time information and feedback from key stakeholders related to these goals, and uses this information to make mid-course corrections in clinical ethics services.

The case

The Vice-President and the clinical ethicist should consider taking the following steps. Firstly, they should explore developing a broader network of ethics support throughout the organization (e.g., the hub and spokes model). Secondly, depending on the previous experience of the clinical ethicist, it may be advisable to augment the clinical ethicist’s expertise with leadership and management skill training. Thirdly, an ethics strategic-planning process should be conducted to create an institutionwide vision for clinical ethics and ensure that the clinical ethics service’s priorities are aligned with the organization’s mission/vision/values and ethics needs, and to build on the organization’s existing ethics capacity. Finally, an evaluation strategy should be developed to monitor, improve, and evaluate the performance of the clinical ethics service in relation to its action plan and other indicators of clinical ethics effectiveness. Following these steps will help to ensure that the organization’s clinical ethics service is integrated, sustainable, accountable, and ultimately more effective.

328 J. L. Gibson et al.

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As he reviews the curriculum for his surgical residency training program, Dr. A is concerned about how to prepare his residents to gain understanding of biomedical ethics as it relates to the specialty and to use their understanding to improve patient care (Royal College of Physicians and Surgeons of Canada, 2001). Last year, he invited a moral philosopher to give a guest lecture, which focused on theoretical issues with no reference to how these concepts relate to clinical experience. The residents’ evaluations were unfavorable: ‘‘a waste of our time,’’ ‘‘not relevant to the problems we face.’’ Recently, the residents and nurses were troubled by a difficult situation on the ward: Mr. B, a 46- year-old patient, was found to have unresectable pancreatic cancer, but his wife insisted that the staff withhold the diagnosis from him because he is prone to depression. Dr. A wonders whether this situation could serve as a learning opportunity for the residents and staff and whether he should try to lead a seminar about this problem. He pages the chief resident.

What is bioethics teaching and why is it important?

Bioethics is now taught in most medical schools as part of the standard curriculum. Many accrediting bodies require residency training programs to teach bioethics as a condition of approval, and there is increasing interest in bioethics in continuing medical education. We need teachers who can help clinicians to learn bioethics, an inherent aspect of

good clinical medicine (Jonsen et al., 1998). The purpose of this chapter is to encourage clinician– teachers to accept this important responsibility and to provide them with practical advice. Teaching bioethics to clinicians such as nurses, physiotherapists, physicians, residents, and medical students is facilitated by using a clinical approach.

How should I approach bioethics teaching in practice?

Working with physicians in training with their clinician–teachers, we have developed a practical approach that we outline by answering five questions: Why should I teach? What should I teach? How should I teach? How should I evaluate? How should I learn?

Why should I teach?

The primary goal of teaching bioethics to clinicians is to enhance their ability to care for patients and families at the bedside and in other clinical settings. Dealing effectively with a bioethical problem depends on recognizing the ethical issue, applying relevant knowledge, analyzing the problem, deciding on a course of action, and implementing the necessary steps to improve the situation (Jonsen et al., 1998). Clinicians confront

330M. F. McKneally and P. A. Singer

ethical problems in a charged public setting, where their values and beliefs, and those of their patients, may not be congruent (Engelhardt, 1996). Enhancing clinicians’ knowledge and skills in resolving ethical quandaries can increase their ability to deal with issues that cause moral distress and thus enable better team and institutional performance in caring for patients.

We favor enlisting interested and respected clinicians as primary teachers of bioethics and encouraging them to pursue additional training in ethics or bioethics. Their expressed values and approach to ethical problems will penetrate widely as part of the informal but powerful cultural network that has been described as the hidden (Hafferty and Franks, 1994) or informal (Hundert et al., 1996) curriculum. Bioethicists, moral philosophers, chaplains, and other non-clinicians are valuable collaborators in presenting the clinical ethics curriculum and can enrich and illuminate the educational experience; however, in our view, they should not displace the clinician–teacher (Siegler, 1981; Shalit, 1997). Unlike other students of ethics, clinician learners are grounded in experiential work with patients; in our experience, they respond better to clinician role models as teachers than to those whose understanding of ethical issues is based on more abstract knowledge. Clinician– teachers’ credibility in the biomedical aspects of care and their unchallenged passport into the clinical domain make them ideal communicators of the ethics curriculum.

What should I teach?

Clinicians in most specialties regularly deal with a common set of ethical issues, such as truth telling, consent, capacity, substitute decision making, confidentiality, conflict of interest, end of life issues, resource allocation, and research ethics. These topics are well suited to an introductory bioethics teaching program. Curricular modules, including teaching cases, discussion questions, suggested answers, summaries, and references, such as those prepared for the Royal College of Physicians and

Surgeons of Canada Bioethics Education Project (Royal College of Physicians and Surgeons of Canada, 2004), are useful for introductory teaching of bioethics in the first and second years of residency training. Cases that focus on the management of problems that are specific to a particular clinical area are effective in specialty conferences. For example, physiatrists will be attracted to an analysis of the issue of justice in the treatment of disabled people. Urologists may find more salience in the case in which a family demands postmortem sperm aspiration and in vitro fertilization of a surviving partner as a condition for organ donation (Murphy, 1995). Discussion of these topics offers an opportunity to deepen the discourse with clinicians about the humanistic and holistic aspects of medicine that are an important part of a well-rounded medical education.

What not to teach? Resist the temptation to teach theory unrelated to cases, particularly at the start. Clinicians want to learn the right thing to do and how to do it; they will learn the theoretical background that guides the ethical decision-making process when they see its applicability to making good decisions.

How should I teach?

Because it is most closely linked to patient care, bioethics should ideally be taught at the bedside or in the clinic. We are unaware of models for bedside teaching of bioethics or systematic evaluation of its effectiveness, and the uneven and hectic pattern of clinical medicine limits the predictability of bedside and clinic teaching. Nevertheless, we encourage clinician–teachers to innovate and expand on this potent pedagogical experience.

Case-based conferences provide an alternative method that is also closely linked to clinical care. Clinicians learn well when they are actively involved in case discussions (Davis et al., 1999). We recommend taking advantage of this in teaching both the practical and theoretical aspects of bioethics. A problem case captures the interest of the clinical audience. The discussion that follows the

case presentation provides a broader exposition of pertinent theory and empirical evidence. It closes with a return to the case. Resolution is achieved by using the definitions, principles, and reasoning introduced during the discussion to clarify the best options for management. When presenting clinical cases, whether on paper or in video format, clinician–teachers can use interactive techniques by asking participants to describe how they would manage the case, explain the reasoning that led them to their position, and outline their approach to mediating the conflicts inherent in the case. Standardized patients or role playing intensifies the experience for medical students and junior residents; more experienced clinician learners are less engaged by this approach. Cases that have caused some measure of moral anguish to the clinicians are especially effective. The strong feelings revived at morbidity and mortality conferences make this a powerful, formative learning experience that is vividly remembered by residents and other clinicians exposed to this tradition (Bosk, 1979). Interactive discussion with peers is a potent catalyst to learning to articulate and analyze ethical issues.

Many clinical medical ethicists recommend the presentation of clinical cases using four main headings: medical factors, patient preferences, quality of life issues and contextual features (Table 42.1; Jonsen et al., 1998). This analytic framework is helpful for identifying issues that require ethical analysis and resolution. Like the ‘‘review of systems’’ in an Oslerian clinical history, it provides structure and reminds students of important but less bioscientific aspects of the case that should be considered in the ethical analysis. One of us (MM) uses a modified form of this analytic tool for casebased teaching.

If Dr. A chooses to use this approach in a facilitated discussion of the case of Mr. B outlined at the beginning of this chapter, he might first ask the residents to provide information on the following.

1.Medical factors. How do we make the diagnosis of pancreatic cancer preoperatively? What intraoperative findings preclude resection? What are

Table 42.1. An approach used for case-based teaching of clinical and ethical decision making

Based on information in Jonsen et al. (1998).

the treatment alternatives? What is the survival rate and prognosis?

2.Preferences. Do patients really want detailed scientific explanations of the extent of their disease? Do family members feel that they can protect the patient from despair or disappointment by dissembling? Why do science-based medical team members insist on disclosure?

3.Quality of life. Discussion might focus on the quality of residual life, the psychological harm from deception, loss of confidence in physicians who misled, and deprivation of the patient’s opportunity to settle emotional as well as financial accounts, or to realize deferred personal goals.

4.Contextual features. What are the unique psychological or social factors particular to the patient that might justify an exception to the general recommendation that truth telling is the best policy? Cultural beliefs about the harm

from disclosure of a diagnosis of terminal illness might be elicited from the residents.

In contrast to the ‘‘review of systems’’ approach in the model by Jonsen et al. (1998), experienced clinician–teachers often use problem-specific frameworks to organize their thinking. Experienced clinicians have a specific approach to common clinical problems; for example, rather than a single framework (i.e., a type of Starling curve) to diagnose and treat all cardiology problems, they use individual frameworks for common paradigm cases

332M. F. McKneally and P. A. Singer

such as heart failure, coronary artery disease, and arrhythmias. Similarly, experienced bioethics teachers can use paradigmatic frameworks for analyzing truth telling, consent, end of life issues, priority setting, and other common ethical problems. In the scenario faced by Dr. A, the paradigm would be truth telling (He´bert et al., 1997). There are specific arguments to use in conversations with patients and families about telling the truth, such as: Mr. B needs time to prepare for death; he may know anyway; when he finds out, he will lose faith in his care team; and he has the right to know. If these arguments fail to convince Mr. B’s wife, an intermediate strategy between withholding the truth and burdening the patient with the truth is to ‘‘offer truth’’ (Freedman, 1993): that is, explicitly ask him if he would like his wife to handle all the medical information or to learn of the medical findings himself directly from his physician.

Small group conferences allow clinicians to develop their skills through active participation in discussion. The large group lecture is a less effective venue, although gifted teachers can be effective, even in this format, if they can evoke the emotional responses associated with important prior clinical experiences of the audience. Debates can introduce humor, tension, and active learning; they may increase the intensity of vicarious participation in the larger group format if they focus on ‘‘what should we do?’’ The learning experience is most intense for the debaters, but requiring members of the audience to take a stand, vote, and defend their position increases their participation and active learning. Well-informed individuals in the audience who have completed assigned reading can help to enliven the debate and stimulate other members of the larger group to become better informed. Residents respond well to this form of peer learning pressure.

How should I evaluate?

In-training evaluation reports (ITERs), a wellestablished method of evaluation in residency training programs, record the discussion of

performance between teachers and their clinician trainees. Such reports are a valuable source of feedback to residents about their clinical performance, and a reminder to program directors of the domains of performance that should be evaluated. Adding a bioethics domain to the ITER emphasizes to both the teacher and the learner that it is important. Turnbull and colleagues (1998) have provided helpful advice on how to use the ITER process effectively; their recommendations may be applied to bioethics. To our knowledge, the ITER has not been evaluated in relation to bioethics. Innovative methods to get feedback from patients and other members of the healthcare team may be particularly applicable to bioethics.

Chart audits can measure clinical performance. Many aspects of performance with respect to ethical issues may not be recorded in the chart because of the customary telegraphic recording of bioscientific aspects of patient care in hospital records. Despite this limitation, Sulmasy and colleagues (1994) used chart audits as a method of evaluating the impact of bioethics teaching on residents’ performance. Their study demonstrated that bioethics education improved clinician learners’ performance in writing and clarifying do-not- resuscitate orders.

Objective structured clinical examinations (OSCEs), using standardized patients, are also used to evaluate clinical performance. We have conducted studies using OSCEs with standardized patients for evaluating bioethics performance (Singer et al., 1993, 1994). This method is feasible and has adequate inter-rater reliability, content validity, and construct validity. However, as with OSCEs for other specific topics, it shares the problem of low internal consistency; a reliable estimate of bioethics performance would require more OSCE stations than is feasible in most settings.

Multiple-choice written examinations, although limited in value, are accepted as reliable methods of evaluating clinical knowledge and judgement. However, they may be better suited to evaluating bioscientific aspects of medicine than the valuebased judgements and reasoning processes that

characterize ethical discourse. Other evaluative formats such as short-answer or essay questions are commonly used in undergraduate and graduate bioethics teaching. A reasonable strategy would be to combine the reliability of these methods with the validity of some of the methods described above.

In addition to measuring learners’ performance, process measures evaluating a bioethics teaching program also describe the number of teaching sessions, the topics, the teaching materials distributed, the number of participating clinicians, the clinicians’ critique of the content and method, and the learners’ evaluations of the session. This record will be helpful when accreditors ask, ‘‘How are you teaching bioethics?’’

How should I learn?

Teaching bioethics to clinicians is a specialized skill, but one that is not difficult to learn for clinicians who are already effective teachers. The content material for learning bioethics is available to teachers and students on the World Wide Web and in journals, books, conferences, and educational programs adapted to their needs. Graduate programs specifically geared at clinicians are now

to clinicians who are interested in bioethics is included in the Appendix at the end of the chapter.

The case

Dr. A discusses his intentions for an education session with the chief resident. He decides against a lecture and helps the chief resident organize a case-based clinical conference about the issue of truth telling, using a debate or discussion format. All of the residents are asked to read about cultural variations in the practice of truth telling about the diagnosis and extent of cancer spread (Thomsen et al., 1993) before attending the conference. Two opinion leaders among them are asked to read

additional information about legal and ethical views on truth telling (He´bert et al., 1997). Enlisting opinion leaders is an effective strategy for implementing change (Stross, 1996). One of the two residents is advised to consult with the psychiatry service, the other with the moral philosopher, inviting both to participate in the discussion of whether withholding the diagnosis is appropriate to forestall depression. Dr. A decides to use the truth-telling module of the Royal College of Physicians and Surgeons of Canada curriculum for his basic teaching plan and references. He prepares copies of the ‘‘Bioethics Bottom Line’’ component of the truth-telling module to distribute at the end of the session as a record of the main points of the discussion. To strengthen his effectiveness in teaching bioethics, Dr. A plans to explore available intensive courses, conferences and workshops. Participants in these programs have described the experience as intellectually engaging and personally rewarding.

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