HEC Forum (2014) 26:135–146 DOI 10.1007/s10730-013-9230-4
Bioethics Consultation Practices and Procedures: A Survey of a Large Canadian Community of Practice R. A. Greenberg • K. W. Anstey • R. Macri A. Heesters • S. Bean • R. Zlotnik Shaul
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Published online: 5 December 2013 Ó Springer Science+Business Media Dordrecht 2013
Abstract The literature fails to reflect general agreement over the nature of the services and procedures provided by bioethicists, and the training and core competencies this work requires. If bioethicists are to define their activities in a consistent way, it makes sense to look for common ground in shared communities of practice. We report results of a survey of the services and procedures among bioethicists affiliated with the University of Toronto Joint Centre for Bioethics (JCB). R. A. Greenberg (&) Department of Bioethics, The Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada e-mail: [email protected] R. A. Greenberg Department of Family and Community Medicine, Joint Centre for Bioethics, University of Toronto, Toronto, ON, Canada K. W. Anstey Toronto Western Hospital, University Health Network, 399 Bathurst Street, Toronto, ON M5T 2S8, Canada e-mail: [email protected] K. W. Anstey Department of Occupational Science & Occupational Therapy, Joint Centre for Bioethics, University of Toronto, Toronto, ON, Canada R. Macri Ontario Shores Centre for Mental Health Sciences, 700 Gordon Street, Whitby, ON L1N 5S9, Canada e-mail: [email protected] A. Heesters Bioethics, University Health Network, Toronto Rehab, 550 University Ave, Toronto, ON M5G 2A2, Canada e-mail: [email protected]
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This is the largest group of bioethicists working in healthcare organizations in Canada. The results suggest there are many common services and procedures of JCB bioethicists. This survey can serve as a baseline for further exploration of the work of JCB bioethicists. Common practices exist with respect to the domains of practice, individual reporting relationships, service availability within business hours and the education and training of the bioethicist. Keywords Clinical ethics consultation Credentialing Ethics consultation Ethicists Clinical ethics Background The literature fails to reflect general agreement over the nature of the services provided by bioethicists, and the training and core competencies this work requires. Setting aside the normative disagreements that may underpin variations in the services and procedures provided, it remains necessary to establish the range of differences in practice. However one may understand the work of a bioethicist, identifying these differences may help prioritize areas for normative debate. Further, it is important to establish how much of a gap in practice needs to be bridged for bioethicists to begin to identify with a formalized collectivity via their certifying or professionalization. Finally, this will provide JCB bioethicists a baseline to further explore questions about the role of bioethicists. The bioethics literature does provide insights into the training and competencies required to be a bioethicist. The American Society for Bioethics and Humanities (ASBH) has published a set of core competencies and is working toward connecting these competencies to a certifying process for Health Care Ethics Consultants. In addition, large organizations like the United States’ Veterans Health Administration have developed their own programs to enforce consistent standards and ensure competence among their many ethics consultants. This work is informed by their own research on the prevalence, practitioners and process of ethics consultation across the United States (Fox et al. 2007). Prior to this work, others published retrospective case studies describing the work of bioethicists, health care professionals and their organizations (Godkin et al. 2005). These types of stakeholder groups have also participated in several surveys examining their views S. Bean Sunnybrook Health Sciences Centre, Joint Centre for Bioethics, University of Toronto, 2075 Bayview Ave. Rm. H263, Toronto, ON M4N 3M5, Canada e-mail: [email protected] R. Zlotnik Shaul Department of Bioethics, Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada e-mail: [email protected] R. Zlotnik Shaul Department of Pediatrics, Joint Centre for Bioethics, University of Toronto, Toronto, ON, Canada
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on the need for ethics services (Racine and Hayes 2006), the ethical dilemmas they encounter (DuVal et al. 2004; Breslin et al. 2005; Hurst et al. 2007; Aleksandrova 2008), the triggers identified for these dilemmas (DuVal et al. 2001; DuVal et al. 2004) the strategies they use to address them (DuVal et al. 2004; Whitehead et al. 2009) and the utility of ethics consultation. One limitation of this literature is its distinctly American focus on the training and practices of ethics committees. It tends to neglect alternative service arrangements such as the activities of lone bioethicists or the ‘‘Hub and Spoke’’1 models that are more common in Canada (Shelton and Bjarnadottir 2008; MacRae et al. 2005). More important than the common citizenship or service delivery models examined in this literature is the unit of analysis it employs. At the national level, it is too wide to control for the countless variables that might affect bioethics practice. These include applicable legislation and regulations (Nowak et al. 2010), institutional affiliations, educational and training programs. Conversely, individual institutions are too narrow a field of view to capture the real practice trends that exist within different geographic regions. If JCB bioethicists are to define their activities in a consistent way, it makes sense to look for common ground in shared communities of practice. The Joint Centre for Bioethics (JCB) is a vibrant community of practice formed through partnership between the University of Toronto and 15 affiliated healthcare organizations that are located within the Greater Toronto Area (GTA) of Ontario, Canada. The JCB Clinical, Organizational and Research Ethics (CORE) Network is comprised of over 30 members (26 bioethicists, fellows, and JCB Management Team). This is the largest multidisciplinary group of bioethicists working in healthcare organizations in Canada, and, to our knowledge, the world. More importantly, all JCB members share a community of practice within a single legal jurisdiction and geographical setting, are linked to the same University Centre, and participate in regular formal meetings and informal local educational events. JCB members contribute to a fellowship program that trains the next generation of bioethicists and many JCB members are themselves products of that training. That said, JCB bioethicists are by no means an entirely homogenous group. Members hail from all over the country and bring their diverse backgrounds, beliefs and experiences to this community of practice. We were interested, therefore, to clarify just what it is that they hold in common and where they might diverge with respect to the services and procedures of the JCB bioethicists. Identifying similarities and differences in the training and services provided by large communities of practice, like the JCB, will serve to inform further exploration of the work of bioethicists and debates over certifying or professionalization. We 1
A model for the delivery of clinical ethics services was developed through the JCB CORE to address the need for greater accountability, sustainability and integration of hospital based ethics services. The metaphor for the Hub and Spoke is that of a wheel containing a core centre or hub with spokes radiating out to a rim. The Hub consists of clinical ethics leadership along with administrative support. Spokes consist of clinicians and ethics education leaders who develop and promote local ethics activities. Important goals of this model for clinical ethics services are building ethics capacity while promoting an interdisciplinary team approach for addressing everyday ethical concerns.
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now turn to our methods for determining how much common ground exists within our community of practice.
Methods The JCB CORE Network recently created a sub-working group, the Professionalization Working Group (PWG), with two overarching aims: (1) to identify any de facto clinical ethics practice standards adopted by a significant majority of our members, and (2) to explore the potential benefits and demands associated with professional certifying and regulation of ‘‘bioethicists.’’ In working towards the first aim, the PWG created a survey to explore the range of clinical ethics consultation practices and procedures among JCB-affiliated bioethicists. A survey with 24 multiple-choice questions and open-text fields for response clarification was administered via Survey MonkeyÒ.2 A brief survey format (completion time of approximately 10 min) was chosen to encourage participation. While the PWG recognizes that many clinical ethics cases have an organizational component, to mitigate participant confusion, the survey focused only on clinical ethics consultation practices and procedures (Bean 2011). For the purposes of the survey, Clinical Ethics Consultation was defined for participants as ‘‘the act of conferring with, seeking clarification about, requesting deliberation concerning, asking guidance/advice about ethical issues, relating to, broadly, patient-care and/or staff support from a bioethicist. A consultation may involve (but is not necessarily limited to) the bioethicist listening, providing information, facilitating communication, advising and/or meeting with one or more persons involved.’’ In an effort to enhance the rigor of the survey questions three hypothetical cases (please see Appendix 1) were developed for the purpose of prompting discussion amongst members of the working group. The aim was to identify both formal and informal practices and procedures regarding consultation. These discussions served as a preliminary step in shaping questions for the survey. Subsequently, the PWG dedicated four additional meetings to the development of the survey. At the 2011 CORE Network Retreat the survey was profiled to obtain buy-in from the CORE. The final survey consisted of four sections: education, clinical ethics consultation practices, reporting structure, and documentation practices. To reduce the likelihood of identification, only aggregated results were disseminated. Questions included a variety of multiple-choice questions, with some presenting the option of adding clarifying comments in open text fields. All bioethicists employed in JCB-affiliated healthcare institutions at the time (26 bioethicists in total) were asked to participate in the survey via an email invitation. The response rate was 81 % (n = 21). One respondent started the survey twice producing duplicate responses. The older duplicate response was removed.
2 SurveyMonkeyÒ is a private web survey development company that enables users to create and publish personal surveys online.
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The University of Toronto Research Ethics Office was consulted to determine whether the study required research ethics review. The project was deemed a quality improvement initiative and, therefore, REB review was not warranted.
Results Education, Training and Experience The JCB bioethicists have varied educational backgrounds including, but not limited to, degrees in law, medicine, nursing, philosophy, social work, religion, and theology. All have graduate degrees. The most common master’s degrees being held are in Philosophy, Bioethics and Social Work. 71 % of the participants have doctoral degrees and most of these are held in Philosophy and Bioethics. Many of the participants surveyed have additional training relevant to the field of bioethics: 62 % have a certificate in research ethics (e.g. TCPS, ICH-GCP, NIH); 33 % have mediation/conflict resolution training; 38 % had completed a Bioethics Practicum (included as part of degree requirement); 29 % have completed a Bioethics Practicum (outside of degree requirements) and 29 % have some form of Leadership training. While some of these forms of training require modest time commitments, more than half of the additional training required more than 50 hours and 35 % more than 100 hours. At the time of this survey the average number of years practicing as a bioethicist was 7.67. There is a considerable range in experience, from 2 to 30 years of practice. Areas of Practice The type of work that our respondents reported doing was fairly uniform: all indicated that they conduct clinical ethics consultations; 95 % deliver ethics education; 90 % have responsibilities in organizational ethics and policy consultation and 86 % perform research ethics consultation and review. Service Availability Participants were asked ‘‘From whom does your service accept requests for a clinical ethics consultation?’’ 95 %, indicated that they accept consultations from staff directly involved in a particular patient’s care, physicians directly involved in the patient’s care, and/or managers and directors. Slightly fewer (90 %) accept consultations from patients, patient’s substitute decision-makers, and all staff in the organization. Fewer (86 %) accept consultations from patients’ family members. Participants were asked about the means by which consultation services can be requested. All participants indicated that their clinical ethics consultation services could be requested by phone, in person or by email. The only means of service request that were not universal were internet-based paging or messaging systems (which were employed by 33 % of respondents). Once their clinical ethics consultation service has been requested, 86 % will make initial contact with the
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requestor by the end of the working day and all reported that they respond within the work week. Bioethicists’ availability for clinical ethics consultation outside of normal business hours varied significantly: 42 % indicated that they were unavailable after hours, 37 % stated that were available around the clock for staff, 32 % were available around the clock for patients and 26 % were available to family members outside of business hours. Our survey also asked participants to describe the way that their service is advertised to potential users. Advertisement of clinical ethics consultation services is predominantly done via internal intranet sites, as was indicated by 90 % of respondents. New staff orientation is another popular way to enhance the profiles of services with 81 % of JCB bioethicists indicating that they participate in those activities. Over 60 % of respondents also used a publically accessible Internet site (67 %) and/or pamphlets available within the hospital (62 %). Service Practices Although 100 % of respondents agreed that capable patients are to be provided with the opportunity to attend family meetings about their care, informal discussions within the JCB community led us to suspect that there might be some variability in bioethicists’ tendency to advise patients (or their substitute decision makers) of the bioethicist’s involvement in a clinical ethics consultation. There were, therefore, three questions in the survey designed to elicit information on this topic (please see Table 1). The responses to the questions show that only 29 % of respondents routinely advise the patient/SDM of their involvement in a consultation pertaining to that patient and only 19 % require a capable patient’s or SDMs agreement to proceed with a clinical consultation regarding their care. For 81 %, the absence of participant of any one party (ex. most responsible physician, or patient) in a consultation would not prevent him/her from proceeding with the consultation. For Table 1 Service practice questions & responses Question
Yes (%)
No (%)
Do you routinely advise a patient or SDM of your involvement in an ethics consultation pertaining to a particular patient?
29
71
Do you require a capable patient’s or SDM’s agreement to proceed with a clinical consultation regarding their care?
19
81
Would the absence of participant of any one party (ex. most responsible physician, or patient) in a consultation prevent the consultation from proceeding?
19
81
For clinical ethics consultation, do you discuss in advance confidentiality and its limitations (subject to legally required disclosures) to the requestor?
80
20
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clinical ethics consultations 80 % discuss in advance of the consultation confidentiality and its limitations (subject to legally required disclosures) to the requestor. Reporting Bioethicists in the CORE group personally report to directors, vice-presidents or their institutional Medical Advisory Committees. Bioethics departments or programs have a variety of reporting relationships within their organizations; 71 % of departments report to an individual at the senior management level, 14 % report into their Board of Directors and 14 % report directly to the Chief Executive Office. A small number, 10 % of respondents, reported that other portfolios report to them (e.g. spiritual care). The activities of JCB Bioethics programs were reported through a number of media. Some bioethicists employed more than one medium of reporting but the breakdown was as follows: regular scheduled briefings (62 %), annual reports (57 %), presentations (48 %), and workload management tools (e.g. internal database tracking consultations) (14.3 %). Documentation Documentation was an area that revealed greater diversity with 71 % of participants indicating that they routinely document clinical consultations in a patient’s medical record only if they have met with the patient or their Substitute Decision-Maker (SDM). Slightly fewer, 62 %, said they document in the clinical record only if the team requests that they do so. Less than half, 43 %, document if no other member of the healthcare team has documented and a mere 5 % said they never document consultations. 85 % of respondents who document in the patients’ records do so mainly in the progress/interdisciplinary notes section of the chart. Participants were also asked to indicate whether they document de-identifiable health information in their own internal files. 90 % keep some form of deidentifiable internal notes regarding a consultation with 43 % of these using databases, 38 % using filing cabinets, 33 % using secure files on the computer, and 5 % using some form of a spreadsheet. The information and metrics they tend to capture varies significantly. However, of those who document in internal notes, all document the primary ethical issue; 85 % document consultation type, requestor role, the secondary ethical issue and any recommendations made; and 80 % document the location of the requestor, background information, the date and the ethical analysis.
Discussion This survey reveals many common practices that are useful to JCB bioethicists in describing the services and procedures they provide to both other stakeholders and others who use the title of bioethicist. As the subject of debates over certifying and professionalization, the title of a bioethicist, in the context of this survey population, have some shared meaning with respect to the domains of practice, individual
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reporting relationships, service availability within business hours and the education and training of the JCB bioethicist. The vast majority of all respondents practice in the domains of clinical and organizational ethics consultation, deliver ethics education, and perform duties related to research ethics review and/or consultation. The JCB bioethicists surveyed have interdisciplinary educational and training backgrounds, but there are clear trends here: most have a doctoral degree and Philosophy, Bioethics, and other arts degrees are the most strongly represented disciplines. A clinical background in nursing or social work is prevalent, as is a professional background in law. A third of respondents have done clinical ethics fellowships. A cursory review of job postings for bioethicists and ethicists in North America on bioethics.net and the circular the JCB Voice (which features jobs across Canada) demonstrates that these education and training pathways are not distinct to the JCB. Indeed, all of the three active postings in United States for these positions on bioethics.net requires masters level training or a doctorate or advanced professional degree, and emphasizes having either clinical training or considerable experience in delivering clinical ethics services. One position requires completion of a fellowship program.3 Further work is needed to assess specifically what training requirements are required for the work of a bioethicist. Despite a great deal of common ground, JCB bioethicists need to further discuss the variability in their program’s reporting relationships, and their individual standards of practice related to notification of their involvement in ethics consultations, availability outside business hours, triggers for documenting in the patient medical record, and metrics used in their own (and varied) documentation systems. There was some variance in where Bioethics Programs reported, and some respondents articulated this as prescribed by their organization’s structure rather than their own preferences. A program’s location in the organizational structure may affect integration in the organization’s activities generally, and involvement in organizational ethics issues specifically. However, respondents emphasized the importance of their relationships with the individuals they report to, and that person’s knowledge and understanding of bioethics, in gaining the leadership support necessary to promote greater integration within the organization. This study revealed that a sizeable minority of JCB bioethicists routinely offer consultation services outside of regular business hours via pager or by appointment. Further discussion of this variance could explore provider expectations for service delivery, and the most effective means of meeting these needs. Nearly equal numbers of respondents use databases, secure files and paper forms to document de-identified consultation metrics outside of the patient record, and use different metrics in doing so. This highlights an opportunity to discuss a shared platform or format for documentation of consultations within a bioethics program.
3
Based on a review of three active clinical ethics positions in the United States on bioethics.net and several past postings of jobs in Canada 2/1/13.
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With respect to documentation within the patient record, the variability of triggers used suggests that bioethicists and their stakeholders may benefit from more discussion and about necessary and sufficient reasons for documenting on the patient’s chart. The American Society for Bioethics and Humanities (ASBH) in conjunction with the Clinical Ethics Consultation Affairs (CECA) standing committee is exploring these matters in the context of including clinical documentation case studies within proposed certifying exams (CECA 2010). Some JCB bioethicists notify a capable patient or their substitute-decision maker of their involvement in a consultation. Those who practice notification corresponded with the minority who also require a capable patient or substitute-decision maker’s agreement to proceed with a clinical ethics consultation. Some of the JCB bioethicists who practice in this way suggest that they do not necessarily view themselves as a members of the patient’s immediate circle of care. Some were of the mindset that in certain clinical consultations (i.e. interacting directly with the patient) they would be considered part of the circle of care. Otherwise, they believe they need permission to be privy to the patient’s personal health information. A minority of JCB bioethicists do not discuss confidentiality and its limits when beginning a consultation. Upon exploring this practice further, for these respondents the decision to discuss confidentiality and its limits turned on the nature of the requestor. If the requestor was a healthcare professional, for example, many believed that they should already be aware of the limits of confidentiality by virtue of the fact that they work in healthcare organizations. Patients and families, on the other hand, would not necessarily be aware of these limits and so it followed that confidentiality should be discussed at the outset of the consultation. Others’ practice included a discussion of confidentiality and its limits for all first time requestors but this was not repeated after an initial contact. In addition, many stated that they would initiate this type of discussion if the consultation request came from a patient, family member, or an individual staff member. For consultations involving larger clinical teams this discussion was often omitted.
Limits The limitations of the study include its uncertain level of generalizability to other contexts given that this survey was directed to an identifiable population of bioethicists within the JCB’s shared community of practice. This context is uncommon among bioethicists—elsewhere many work in settings where they may be the only bioethicist, or one of a few bioethicists grouped in an institutional program. The survey questions were reviewed and validated through focus groups and were piloted to minimize variability in subjective interpretation. We recognize, however, that error and ambiguity can never be eliminated entirely. Additionally, some of the survey respondents were also members of the PWG. Participation in the research by the community being studied is not uncommon and has been encouraged by research ethics guidelines (Canadian Institutes of Health Research 2010).
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Conclusion The results suggest there are many common services and procedures of JCB bioethicists. This survey can serve as a baseline for further exploration of the work of JCB bioethicists. Common practices exist with respect to the domains of practice, individual reporting relationships, service availability within business hours and the education and training of the JCB bioethicist. Ongoing debates over professionalization and certifying of bioethicists should arguably focus on terrain that, on the basis of our results, appears to be more contested. This includes discussion of standards for notifying stakeholders of a bioethicist’s involvement in ethics consultations, their triggers for documenting in the patient medical record, what metrics the bioethicist will document in their own notes, and the format this should take, and to what extent and by what means they should be available outside business hours. The PWG plans to stimulate further discussion of these matters by developing a consensus statement related to services and procedures for clinical ethics consultation for JCB-affiliated bioethicists. As well, the PWG plans to explore more normative questions about consultation practices with both JCBaffiliated bioethicists and other national and international groups working on the same issues.
Future Research This paper has begun to describe the practice of JCB bioethicists. Future research is needed to provide an in-depth description of the practice of consultation such as how consults are conducted, the goals of consultation and the like. As well, research is needed to explore how consultations are practiced with how bioethicists think they should be practiced.
Appendix 1: Case Scenarios Hybrid: Primarily Organizational with a Secondary Clinical Component Patient presents to the Emergency Department with bowel perforation due to Cancer, urgent surgery is provided and follow up chemo is the recommended standard of care. It is anticipated that dialysis will soon be required. Despite comorbidities, patient’s prognosis is reasonable if chemo is provided. Patient was a landed immigrant (i.e. permanent resident) in Ontario for 10? years but is severely autistic and has let all documentation for his Ontario Health Insurance Plan (OHIP) lapse. Subsequently, he has been unable to get assistance from country of origin’s consulate or OHIP. The patient has one local relative that has cared for the patient but does not have the ability to pay for many of the patient’s recommended treatments. The patient no longer has any family living in his country of origin and dialysis is not available there. The organization does not have a policy addressing treatment of uninsured patients.
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Hybrid: Primarily Organizational with a Secondary Clinical Component In response to increasing occurrences of substitute decision makers (SDM) attempting to restrict patient visitation based on complex family dynamics, personality conflicts, etc. the institution decides to develop a visitation guidelines which will provide guidance on this purview of the SDM to restrict patient visitation. The guideline will also address staff concerns that their workload is being heavily impacted by trying to implement or accommodate SDM restrictions and any associated conflicts that arise with denied visitors. Hybrid: Research-Organizational-Clinical Increasingly, research sponsors are including language in the informed consent form indicating that in the instance of an accidental needle stick, the patient/participant will consent to undergo HIV testing. An institutional policy exists that indicates the process to be applied requires seeking the patient/participant’s consent to undergo HIV blood testing. The institutional policy states that consent is voluntary; however, an Ontario law has a provision through which staff can under some circumstances compel a patient to undergo HIV testing. This provision is neither mentioned nor incorporated into the existing policy. The informed consent form template is silent on this point.
References Aleksandrova, S. (2008). Survey on the experience in ethical decision-making and attitude of Pleven University hospital physicians towards ethics consultation. Medicine Health Care Philosophy, 11(1), 35–42. Bean, S. (2011). Navigating the murky intersection between clinical & organizational ethics: A hybrid case taxonomy. Bioethics, 25(6), 320–325. Breslin, J. M., MacRae, S. K., Bell, J., Singer, P. A., et al. (2005). Top 10 health care ethics challenges facing the public: Views of Toronto bioethicists. BMC Medical Ethics, 6, E5. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada. (2010). Tri-council policy statement: Ethical conduct for research involving humans. Clinical Ethics Consultation Affairs (CECA). (2010). Standing Committee of the American Society for Bioethics and Humanities. CECA Report to the Board of Directors. Retrieved February 1, 2013, from http://www.asbh.org/uploads/files/ceca%20c-a%20report%20101210.pdf. DuVal, G., Clarridge, B., Gensler, G., & Danis, M. (2004). A national survey of U.S. internists’ experiences with ethical dilemmas and ethics consultation. Journal of General Internal Medicine, 19(3), 251–258. DuVal, G., Sartorius, L., Clarridge, B., Gensler, G., et al. (2001). What triggers requests for ethics consultations? Journal of Medical Ethics, 27(Suppl 1), i24–i29. Fox, E., Myers, S., et al. (2007). Ethics consultation in United States hospitals: A national survey. American Journal of Bioethics, 7(2), 13–25. Godkin, M. D., Faith, K., Upshur, R. E. G., MacRae, S. K., et al. (2005). Project examining effectiveness in clinical ethics (PEECE): Phase 1-descriptive analysis of nine clinical ethics services. Journal of Medical Ethics, 31(9), 505–512. Hurst, S. A., Perrier, A., Pegoraro, S., Reiter-Theil, S., et al. (2007). Ethical difficulties in clinical practice: Experiences of European doctors. Journal of Medical Ethics, 33(1), 51–57.
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MacRae, S. K., Chidwick, P., Berry, S., Secker, B., et al. (2005). Clinical bioethics integration, sustainability, and accountability: The Hub and Spokes Strategy. Journal of Medical Ethics, 31, 256–261. Nowak, C., Zlotnik Shaul, R., & Birenbaum, S. (2010). Legal vulnerability of bioethicists in Canada: Is a new era upon us? Health Law in Canada, 30(3), 132–143. Racine, E., & Hayes, K. (2006). The need for a clinical ethics service and its goals in a community healthcare service centre: A survey. Journal of Medical Ethics, 32(10), 564–566. Shelton, W., & Bjarnadottir, D. (2008). Ethics consultation & the committee. In D. M. Hester (Ed.), Ethics by committee (pp. 49–77). Lanham, MD: Rowman & Littlefield. Whitehead, J. M., Sokol, D. K., Bowman, D., Sedgwick, P., et al. (2009). Consultation activities of clinical ethics committees in the United Kingdom: An empirical study and wake-up call. Postgraduate Medical Journal, 85(1007), 451–454.
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Bioethics Consultation Practices and Procedures: A Survey of a Large Canadian Community of Practice R. A. Greenberg • K. W. Anstey • R. Macri A. Heesters • S. Bean • R. Zlotnik Shaul
•
Published online: 5 December 2013 Ó Springer Science+Business Media Dordrecht 2013
Abstract The literature fails to reflect general agreement over the nature of the services and procedures provided by bioethicists, and the training and core competencies this work requires. If bioethicists are to define their activities in a consistent way, it makes sense to look for common ground in shared communities of practice. We report results of a survey of the services and procedures among bioethicists affiliated with the University of Toronto Joint Centre for Bioethics (JCB). R. A. Greenberg (&) Department of Bioethics, The Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada e-mail: [email protected] R. A. Greenberg Department of Family and Community Medicine, Joint Centre for Bioethics, University of Toronto, Toronto, ON, Canada K. W. Anstey Toronto Western Hospital, University Health Network, 399 Bathurst Street, Toronto, ON M5T 2S8, Canada e-mail: [email protected] K. W. Anstey Department of Occupational Science & Occupational Therapy, Joint Centre for Bioethics, University of Toronto, Toronto, ON, Canada R. Macri Ontario Shores Centre for Mental Health Sciences, 700 Gordon Street, Whitby, ON L1N 5S9, Canada e-mail: [email protected] A. Heesters Bioethics, University Health Network, Toronto Rehab, 550 University Ave, Toronto, ON M5G 2A2, Canada e-mail: [email protected]
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This is the largest group of bioethicists working in healthcare organizations in Canada. The results suggest there are many common services and procedures of JCB bioethicists. This survey can serve as a baseline for further exploration of the work of JCB bioethicists. Common practices exist with respect to the domains of practice, individual reporting relationships, service availability within business hours and the education and training of the bioethicist. Keywords Clinical ethics consultation Credentialing Ethics consultation Ethicists Clinical ethics Background The literature fails to reflect general agreement over the nature of the services provided by bioethicists, and the training and core competencies this work requires. Setting aside the normative disagreements that may underpin variations in the services and procedures provided, it remains necessary to establish the range of differences in practice. However one may understand the work of a bioethicist, identifying these differences may help prioritize areas for normative debate. Further, it is important to establish how much of a gap in practice needs to be bridged for bioethicists to begin to identify with a formalized collectivity via their certifying or professionalization. Finally, this will provide JCB bioethicists a baseline to further explore questions about the role of bioethicists. The bioethics literature does provide insights into the training and competencies required to be a bioethicist. The American Society for Bioethics and Humanities (ASBH) has published a set of core competencies and is working toward connecting these competencies to a certifying process for Health Care Ethics Consultants. In addition, large organizations like the United States’ Veterans Health Administration have developed their own programs to enforce consistent standards and ensure competence among their many ethics consultants. This work is informed by their own research on the prevalence, practitioners and process of ethics consultation across the United States (Fox et al. 2007). Prior to this work, others published retrospective case studies describing the work of bioethicists, health care professionals and their organizations (Godkin et al. 2005). These types of stakeholder groups have also participated in several surveys examining their views S. Bean Sunnybrook Health Sciences Centre, Joint Centre for Bioethics, University of Toronto, 2075 Bayview Ave. Rm. H263, Toronto, ON M4N 3M5, Canada e-mail: [email protected] R. Zlotnik Shaul Department of Bioethics, Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada e-mail: [email protected] R. Zlotnik Shaul Department of Pediatrics, Joint Centre for Bioethics, University of Toronto, Toronto, ON, Canada
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on the need for ethics services (Racine and Hayes 2006), the ethical dilemmas they encounter (DuVal et al. 2004; Breslin et al. 2005; Hurst et al. 2007; Aleksandrova 2008), the triggers identified for these dilemmas (DuVal et al. 2001; DuVal et al. 2004) the strategies they use to address them (DuVal et al. 2004; Whitehead et al. 2009) and the utility of ethics consultation. One limitation of this literature is its distinctly American focus on the training and practices of ethics committees. It tends to neglect alternative service arrangements such as the activities of lone bioethicists or the ‘‘Hub and Spoke’’1 models that are more common in Canada (Shelton and Bjarnadottir 2008; MacRae et al. 2005). More important than the common citizenship or service delivery models examined in this literature is the unit of analysis it employs. At the national level, it is too wide to control for the countless variables that might affect bioethics practice. These include applicable legislation and regulations (Nowak et al. 2010), institutional affiliations, educational and training programs. Conversely, individual institutions are too narrow a field of view to capture the real practice trends that exist within different geographic regions. If JCB bioethicists are to define their activities in a consistent way, it makes sense to look for common ground in shared communities of practice. The Joint Centre for Bioethics (JCB) is a vibrant community of practice formed through partnership between the University of Toronto and 15 affiliated healthcare organizations that are located within the Greater Toronto Area (GTA) of Ontario, Canada. The JCB Clinical, Organizational and Research Ethics (CORE) Network is comprised of over 30 members (26 bioethicists, fellows, and JCB Management Team). This is the largest multidisciplinary group of bioethicists working in healthcare organizations in Canada, and, to our knowledge, the world. More importantly, all JCB members share a community of practice within a single legal jurisdiction and geographical setting, are linked to the same University Centre, and participate in regular formal meetings and informal local educational events. JCB members contribute to a fellowship program that trains the next generation of bioethicists and many JCB members are themselves products of that training. That said, JCB bioethicists are by no means an entirely homogenous group. Members hail from all over the country and bring their diverse backgrounds, beliefs and experiences to this community of practice. We were interested, therefore, to clarify just what it is that they hold in common and where they might diverge with respect to the services and procedures of the JCB bioethicists. Identifying similarities and differences in the training and services provided by large communities of practice, like the JCB, will serve to inform further exploration of the work of bioethicists and debates over certifying or professionalization. We 1
A model for the delivery of clinical ethics services was developed through the JCB CORE to address the need for greater accountability, sustainability and integration of hospital based ethics services. The metaphor for the Hub and Spoke is that of a wheel containing a core centre or hub with spokes radiating out to a rim. The Hub consists of clinical ethics leadership along with administrative support. Spokes consist of clinicians and ethics education leaders who develop and promote local ethics activities. Important goals of this model for clinical ethics services are building ethics capacity while promoting an interdisciplinary team approach for addressing everyday ethical concerns.
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now turn to our methods for determining how much common ground exists within our community of practice.
Methods The JCB CORE Network recently created a sub-working group, the Professionalization Working Group (PWG), with two overarching aims: (1) to identify any de facto clinical ethics practice standards adopted by a significant majority of our members, and (2) to explore the potential benefits and demands associated with professional certifying and regulation of ‘‘bioethicists.’’ In working towards the first aim, the PWG created a survey to explore the range of clinical ethics consultation practices and procedures among JCB-affiliated bioethicists. A survey with 24 multiple-choice questions and open-text fields for response clarification was administered via Survey MonkeyÒ.2 A brief survey format (completion time of approximately 10 min) was chosen to encourage participation. While the PWG recognizes that many clinical ethics cases have an organizational component, to mitigate participant confusion, the survey focused only on clinical ethics consultation practices and procedures (Bean 2011). For the purposes of the survey, Clinical Ethics Consultation was defined for participants as ‘‘the act of conferring with, seeking clarification about, requesting deliberation concerning, asking guidance/advice about ethical issues, relating to, broadly, patient-care and/or staff support from a bioethicist. A consultation may involve (but is not necessarily limited to) the bioethicist listening, providing information, facilitating communication, advising and/or meeting with one or more persons involved.’’ In an effort to enhance the rigor of the survey questions three hypothetical cases (please see Appendix 1) were developed for the purpose of prompting discussion amongst members of the working group. The aim was to identify both formal and informal practices and procedures regarding consultation. These discussions served as a preliminary step in shaping questions for the survey. Subsequently, the PWG dedicated four additional meetings to the development of the survey. At the 2011 CORE Network Retreat the survey was profiled to obtain buy-in from the CORE. The final survey consisted of four sections: education, clinical ethics consultation practices, reporting structure, and documentation practices. To reduce the likelihood of identification, only aggregated results were disseminated. Questions included a variety of multiple-choice questions, with some presenting the option of adding clarifying comments in open text fields. All bioethicists employed in JCB-affiliated healthcare institutions at the time (26 bioethicists in total) were asked to participate in the survey via an email invitation. The response rate was 81 % (n = 21). One respondent started the survey twice producing duplicate responses. The older duplicate response was removed.
2 SurveyMonkeyÒ is a private web survey development company that enables users to create and publish personal surveys online.
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The University of Toronto Research Ethics Office was consulted to determine whether the study required research ethics review. The project was deemed a quality improvement initiative and, therefore, REB review was not warranted.
Results Education, Training and Experience The JCB bioethicists have varied educational backgrounds including, but not limited to, degrees in law, medicine, nursing, philosophy, social work, religion, and theology. All have graduate degrees. The most common master’s degrees being held are in Philosophy, Bioethics and Social Work. 71 % of the participants have doctoral degrees and most of these are held in Philosophy and Bioethics. Many of the participants surveyed have additional training relevant to the field of bioethics: 62 % have a certificate in research ethics (e.g. TCPS, ICH-GCP, NIH); 33 % have mediation/conflict resolution training; 38 % had completed a Bioethics Practicum (included as part of degree requirement); 29 % have completed a Bioethics Practicum (outside of degree requirements) and 29 % have some form of Leadership training. While some of these forms of training require modest time commitments, more than half of the additional training required more than 50 hours and 35 % more than 100 hours. At the time of this survey the average number of years practicing as a bioethicist was 7.67. There is a considerable range in experience, from 2 to 30 years of practice. Areas of Practice The type of work that our respondents reported doing was fairly uniform: all indicated that they conduct clinical ethics consultations; 95 % deliver ethics education; 90 % have responsibilities in organizational ethics and policy consultation and 86 % perform research ethics consultation and review. Service Availability Participants were asked ‘‘From whom does your service accept requests for a clinical ethics consultation?’’ 95 %, indicated that they accept consultations from staff directly involved in a particular patient’s care, physicians directly involved in the patient’s care, and/or managers and directors. Slightly fewer (90 %) accept consultations from patients, patient’s substitute decision-makers, and all staff in the organization. Fewer (86 %) accept consultations from patients’ family members. Participants were asked about the means by which consultation services can be requested. All participants indicated that their clinical ethics consultation services could be requested by phone, in person or by email. The only means of service request that were not universal were internet-based paging or messaging systems (which were employed by 33 % of respondents). Once their clinical ethics consultation service has been requested, 86 % will make initial contact with the
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requestor by the end of the working day and all reported that they respond within the work week. Bioethicists’ availability for clinical ethics consultation outside of normal business hours varied significantly: 42 % indicated that they were unavailable after hours, 37 % stated that were available around the clock for staff, 32 % were available around the clock for patients and 26 % were available to family members outside of business hours. Our survey also asked participants to describe the way that their service is advertised to potential users. Advertisement of clinical ethics consultation services is predominantly done via internal intranet sites, as was indicated by 90 % of respondents. New staff orientation is another popular way to enhance the profiles of services with 81 % of JCB bioethicists indicating that they participate in those activities. Over 60 % of respondents also used a publically accessible Internet site (67 %) and/or pamphlets available within the hospital (62 %). Service Practices Although 100 % of respondents agreed that capable patients are to be provided with the opportunity to attend family meetings about their care, informal discussions within the JCB community led us to suspect that there might be some variability in bioethicists’ tendency to advise patients (or their substitute decision makers) of the bioethicist’s involvement in a clinical ethics consultation. There were, therefore, three questions in the survey designed to elicit information on this topic (please see Table 1). The responses to the questions show that only 29 % of respondents routinely advise the patient/SDM of their involvement in a consultation pertaining to that patient and only 19 % require a capable patient’s or SDMs agreement to proceed with a clinical consultation regarding their care. For 81 %, the absence of participant of any one party (ex. most responsible physician, or patient) in a consultation would not prevent him/her from proceeding with the consultation. For Table 1 Service practice questions & responses Question
Yes (%)
No (%)
Do you routinely advise a patient or SDM of your involvement in an ethics consultation pertaining to a particular patient?
29
71
Do you require a capable patient’s or SDM’s agreement to proceed with a clinical consultation regarding their care?
19
81
Would the absence of participant of any one party (ex. most responsible physician, or patient) in a consultation prevent the consultation from proceeding?
19
81
For clinical ethics consultation, do you discuss in advance confidentiality and its limitations (subject to legally required disclosures) to the requestor?
80
20
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clinical ethics consultations 80 % discuss in advance of the consultation confidentiality and its limitations (subject to legally required disclosures) to the requestor. Reporting Bioethicists in the CORE group personally report to directors, vice-presidents or their institutional Medical Advisory Committees. Bioethics departments or programs have a variety of reporting relationships within their organizations; 71 % of departments report to an individual at the senior management level, 14 % report into their Board of Directors and 14 % report directly to the Chief Executive Office. A small number, 10 % of respondents, reported that other portfolios report to them (e.g. spiritual care). The activities of JCB Bioethics programs were reported through a number of media. Some bioethicists employed more than one medium of reporting but the breakdown was as follows: regular scheduled briefings (62 %), annual reports (57 %), presentations (48 %), and workload management tools (e.g. internal database tracking consultations) (14.3 %). Documentation Documentation was an area that revealed greater diversity with 71 % of participants indicating that they routinely document clinical consultations in a patient’s medical record only if they have met with the patient or their Substitute Decision-Maker (SDM). Slightly fewer, 62 %, said they document in the clinical record only if the team requests that they do so. Less than half, 43 %, document if no other member of the healthcare team has documented and a mere 5 % said they never document consultations. 85 % of respondents who document in the patients’ records do so mainly in the progress/interdisciplinary notes section of the chart. Participants were also asked to indicate whether they document de-identifiable health information in their own internal files. 90 % keep some form of deidentifiable internal notes regarding a consultation with 43 % of these using databases, 38 % using filing cabinets, 33 % using secure files on the computer, and 5 % using some form of a spreadsheet. The information and metrics they tend to capture varies significantly. However, of those who document in internal notes, all document the primary ethical issue; 85 % document consultation type, requestor role, the secondary ethical issue and any recommendations made; and 80 % document the location of the requestor, background information, the date and the ethical analysis.
Discussion This survey reveals many common practices that are useful to JCB bioethicists in describing the services and procedures they provide to both other stakeholders and others who use the title of bioethicist. As the subject of debates over certifying and professionalization, the title of a bioethicist, in the context of this survey population, have some shared meaning with respect to the domains of practice, individual
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reporting relationships, service availability within business hours and the education and training of the JCB bioethicist. The vast majority of all respondents practice in the domains of clinical and organizational ethics consultation, deliver ethics education, and perform duties related to research ethics review and/or consultation. The JCB bioethicists surveyed have interdisciplinary educational and training backgrounds, but there are clear trends here: most have a doctoral degree and Philosophy, Bioethics, and other arts degrees are the most strongly represented disciplines. A clinical background in nursing or social work is prevalent, as is a professional background in law. A third of respondents have done clinical ethics fellowships. A cursory review of job postings for bioethicists and ethicists in North America on bioethics.net and the circular the JCB Voice (which features jobs across Canada) demonstrates that these education and training pathways are not distinct to the JCB. Indeed, all of the three active postings in United States for these positions on bioethics.net requires masters level training or a doctorate or advanced professional degree, and emphasizes having either clinical training or considerable experience in delivering clinical ethics services. One position requires completion of a fellowship program.3 Further work is needed to assess specifically what training requirements are required for the work of a bioethicist. Despite a great deal of common ground, JCB bioethicists need to further discuss the variability in their program’s reporting relationships, and their individual standards of practice related to notification of their involvement in ethics consultations, availability outside business hours, triggers for documenting in the patient medical record, and metrics used in their own (and varied) documentation systems. There was some variance in where Bioethics Programs reported, and some respondents articulated this as prescribed by their organization’s structure rather than their own preferences. A program’s location in the organizational structure may affect integration in the organization’s activities generally, and involvement in organizational ethics issues specifically. However, respondents emphasized the importance of their relationships with the individuals they report to, and that person’s knowledge and understanding of bioethics, in gaining the leadership support necessary to promote greater integration within the organization. This study revealed that a sizeable minority of JCB bioethicists routinely offer consultation services outside of regular business hours via pager or by appointment. Further discussion of this variance could explore provider expectations for service delivery, and the most effective means of meeting these needs. Nearly equal numbers of respondents use databases, secure files and paper forms to document de-identified consultation metrics outside of the patient record, and use different metrics in doing so. This highlights an opportunity to discuss a shared platform or format for documentation of consultations within a bioethics program.
3
Based on a review of three active clinical ethics positions in the United States on bioethics.net and several past postings of jobs in Canada 2/1/13.
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With respect to documentation within the patient record, the variability of triggers used suggests that bioethicists and their stakeholders may benefit from more discussion and about necessary and sufficient reasons for documenting on the patient’s chart. The American Society for Bioethics and Humanities (ASBH) in conjunction with the Clinical Ethics Consultation Affairs (CECA) standing committee is exploring these matters in the context of including clinical documentation case studies within proposed certifying exams (CECA 2010). Some JCB bioethicists notify a capable patient or their substitute-decision maker of their involvement in a consultation. Those who practice notification corresponded with the minority who also require a capable patient or substitute-decision maker’s agreement to proceed with a clinical ethics consultation. Some of the JCB bioethicists who practice in this way suggest that they do not necessarily view themselves as a members of the patient’s immediate circle of care. Some were of the mindset that in certain clinical consultations (i.e. interacting directly with the patient) they would be considered part of the circle of care. Otherwise, they believe they need permission to be privy to the patient’s personal health information. A minority of JCB bioethicists do not discuss confidentiality and its limits when beginning a consultation. Upon exploring this practice further, for these respondents the decision to discuss confidentiality and its limits turned on the nature of the requestor. If the requestor was a healthcare professional, for example, many believed that they should already be aware of the limits of confidentiality by virtue of the fact that they work in healthcare organizations. Patients and families, on the other hand, would not necessarily be aware of these limits and so it followed that confidentiality should be discussed at the outset of the consultation. Others’ practice included a discussion of confidentiality and its limits for all first time requestors but this was not repeated after an initial contact. In addition, many stated that they would initiate this type of discussion if the consultation request came from a patient, family member, or an individual staff member. For consultations involving larger clinical teams this discussion was often omitted.
Limits The limitations of the study include its uncertain level of generalizability to other contexts given that this survey was directed to an identifiable population of bioethicists within the JCB’s shared community of practice. This context is uncommon among bioethicists—elsewhere many work in settings where they may be the only bioethicist, or one of a few bioethicists grouped in an institutional program. The survey questions were reviewed and validated through focus groups and were piloted to minimize variability in subjective interpretation. We recognize, however, that error and ambiguity can never be eliminated entirely. Additionally, some of the survey respondents were also members of the PWG. Participation in the research by the community being studied is not uncommon and has been encouraged by research ethics guidelines (Canadian Institutes of Health Research 2010).
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Conclusion The results suggest there are many common services and procedures of JCB bioethicists. This survey can serve as a baseline for further exploration of the work of JCB bioethicists. Common practices exist with respect to the domains of practice, individual reporting relationships, service availability within business hours and the education and training of the JCB bioethicist. Ongoing debates over professionalization and certifying of bioethicists should arguably focus on terrain that, on the basis of our results, appears to be more contested. This includes discussion of standards for notifying stakeholders of a bioethicist’s involvement in ethics consultations, their triggers for documenting in the patient medical record, what metrics the bioethicist will document in their own notes, and the format this should take, and to what extent and by what means they should be available outside business hours. The PWG plans to stimulate further discussion of these matters by developing a consensus statement related to services and procedures for clinical ethics consultation for JCB-affiliated bioethicists. As well, the PWG plans to explore more normative questions about consultation practices with both JCBaffiliated bioethicists and other national and international groups working on the same issues.
Future Research This paper has begun to describe the practice of JCB bioethicists. Future research is needed to provide an in-depth description of the practice of consultation such as how consults are conducted, the goals of consultation and the like. As well, research is needed to explore how consultations are practiced with how bioethicists think they should be practiced.
Appendix 1: Case Scenarios Hybrid: Primarily Organizational with a Secondary Clinical Component Patient presents to the Emergency Department with bowel perforation due to Cancer, urgent surgery is provided and follow up chemo is the recommended standard of care. It is anticipated that dialysis will soon be required. Despite comorbidities, patient’s prognosis is reasonable if chemo is provided. Patient was a landed immigrant (i.e. permanent resident) in Ontario for 10? years but is severely autistic and has let all documentation for his Ontario Health Insurance Plan (OHIP) lapse. Subsequently, he has been unable to get assistance from country of origin’s consulate or OHIP. The patient has one local relative that has cared for the patient but does not have the ability to pay for many of the patient’s recommended treatments. The patient no longer has any family living in his country of origin and dialysis is not available there. The organization does not have a policy addressing treatment of uninsured patients.
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Hybrid: Primarily Organizational with a Secondary Clinical Component In response to increasing occurrences of substitute decision makers (SDM) attempting to restrict patient visitation based on complex family dynamics, personality conflicts, etc. the institution decides to develop a visitation guidelines which will provide guidance on this purview of the SDM to restrict patient visitation. The guideline will also address staff concerns that their workload is being heavily impacted by trying to implement or accommodate SDM restrictions and any associated conflicts that arise with denied visitors. Hybrid: Research-Organizational-Clinical Increasingly, research sponsors are including language in the informed consent form indicating that in the instance of an accidental needle stick, the patient/participant will consent to undergo HIV testing. An institutional policy exists that indicates the process to be applied requires seeking the patient/participant’s consent to undergo HIV blood testing. The institutional policy states that consent is voluntary; however, an Ontario law has a provision through which staff can under some circumstances compel a patient to undergo HIV testing. This provision is neither mentioned nor incorporated into the existing policy. The informed consent form template is silent on this point.
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