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Abstract
To investigate the current status of hospital clinical ethics committees (CEC) and how they have evolved in Canada over the past 20 years, this paper presents an overview of the findings from a 2008 survey and compares these findings with two previous Canadian surveys conducted in 1989 and 1984. All Canadian hospitals over 100 beds, of which at least some were acute care, were surveyed to determine the structure of CEC, how they function, the perceived achievements of these committees and opinions about areas with which CEC should be involved. The percentage of hospitals with CEC in our sample was found to be 85% compared with 58% and 18% in 1989 and 1984, respectively. The wide variation in the size of committees and the composition of their membership has continued. Meetings of CEC have become more regularised and formalised over time. CEC continue to be predominately advisory in their nature, and by 2008 there was a shift in the priority of the activities of CEC to meeting ethics education needs and providing counselling and support with less emphasis on advising about policy and procedures. More research is needed on how best to define what the scope of activities of CEC should be in order to meet the needs of hospitals in Canada and elsewhere. More research also is needed on the actual outcomes to patients, families, health professionals and organisations from the work of these committees in order to support the considerable time committee members devote to this endeavour.
- Clinical ethics committees
- ethics committees/consultation
- hospital ethics committees
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In the 1980s, hospitals in Canada began to establish ethics committees for clinical practice, often termed clinical ethics committees (CEC). Two national Canadian surveys of CEC have been conducted, the first in 1984 and the second in 1989.1 2 Almost 20 years later, however, little is known about the current state of CEC in Canada. The purpose of our study was to gain an understanding of how Canadian CEC have evolved over the past 20 years. To achieve this purpose, we conducted a survey of chairpersons of CEC at both English and French-language Canadian hospitals regarding their membership, procedures and practices, perceived effectiveness and impact, and areas for committee involvement.
Before the 1980s there were very few CEC in Canada.2 Avard et al2 surveyed 215 English and French-language hospitals in Canada with at least 300 beds in 1984. Only 18% of hospitals surveyed had an ethics committee, most of which were newly established (62% had been introduced in the previous 3 years). Avard et al2 found that CEC were primarily advisory and focused on setting policies and procedures, education, and helping with decisions about continuing life support. They also noted that there was ‘much variability in size, membership and procedural mechanisms of ethics committees’ (p 26), which they suggested could have been a reflection of committee immaturity.
In 1989, Storch and colleagues3 used the instrument of Avard et al2 to survey all 142 English-language Canadian hospitals with 300 or more beds. Storch et al3 reported a sharp increase in the number of CEC, with 70 of 120 participating hospitals (58%) reporting a CEC in their institution, an increase of 40% since 1984. Thirty per cent of the CEC in 1989 were less than 2 years old. Similar to the 1984 results, Storch et al3 found that CEC were primarily advisory in nature and focused on ethical policy recommendation and ethics education. Very few CEC in 1989 reported helping with decisions about continuing life support.
Storch et al3 noted that their survey did not investigate the effectiveness of ethics committees and, therefore, the second part of their research was an in-depth study of five randomly selected, well-established ethics committees (ie, which had been in existence for at least 5 years) in hospitals that were stratified by geography and religious/non-religious affiliation.1 They found variation in committee structure and reporting but all were involved in clinical ethical cases, with four CEC conducting case consultations, whereas the fifth committee limited its involvement to the discussion of cases. Other key activities were policy development and education. Physicians generally supported the idea of hospital ethics committees, but also supported the tradition of physicians having primary decision-making power for ethical decisions. Typically, physicians consulted other physicians for ethical advice on difficult decisions, and some expressed concern with the lack of ethics knowledge of members of their ethics committee. Nurses were generally positive about the idea of ethics committees, but were unaware of the presence of an ethics committee in their hospital. Furthermore, most nurses and nurse managers thought that nurses should go through normal administrative channels to bring an issue to the attention of the ethics committee.
Although CEC have had time to become more established throughout Canada and mature in their organisational practices and procedures, much still remains to be learnt about Canadian CEC as they operate almost 20 years after the survey of Storch et al.3 Furthermore, an understanding of the effectiveness of CEC remains to be determined.
The limited research on ethics committees also includes national American surveys,4–6 surveys of an American state,7 8 surveys in other countries, such as the UK,9 China10 or Japan,11 as well as surveys of different medical specialities.12–14 These surveys have addressed structural aspects of ethics committees, such as committee size and membership. Osborne et al14 included ethics committee function in their study, but their examination was limited to estimates of the amount of time the committee spent on case review, policy development and education.
Berchelmann and Blechner15 interviewed 21 chairpersons of ethics committees in Connecticut, USA, about the effectiveness of these committees and they provided a detailed account of the committees. Only five of the 21 chairpersons said their committees dealt with organisational ethics issues, but most of the chairpersons said their role was to discuss cases, develop policies and provide education. One problem identified was the lack of ethics education of committee members. Similarly, Zhou et al10 found that 14.3% of the hospital ethics committees they surveyed in Shanghai did not provide members with formal bioethical education.
Beleveld et al16 suggest there are two possible main missions of hospital ethics committees: to help with the ethical concerns of clinicians and to assuage managers' concerns, such as restoring public confidence or decreasing litigation claims from patients. Related to the mission of helping with clinicians' ethical concerns, they outlined nine missions that hospital ethics committees may assume, recognising that these are not mutually exclusive or exhaustive: (1) respecting the patient's interest; (2) education; (3) consensus-forming; (4) therapeutic (confidence-raising); (5) conflict or dispute resolution; (6) towards participation; (7) towards local democracy; (8) ethical procedural; and (9) ethical substantive. Similarly, they outlined two managerial missions for hospital ethics committees: managerial economic and managerial political. Whereas these authors proposed categories of missions of hospital ethics committees, their work was not grounded in empirical evidence.
Methods
We mailed a similar survey to that used by Avard et al2 and Storch et al3 to the chief executive officers (CEO) of all English and French-language Canadian acute care hospitals with 100 or more beds. Given the prevalence of ethical issues today, we used a 100-bed rather than 300-bed size for inclusion of hospitals in our survey. We reasoned even relatively small hospitals might have a CEC and we did not want to exclude them. All hospitals were identified using the comprehensive national guide to accredited healthcare facilities in Canada.17 The Hospital Ethics Survey used in the earlier surveys2 3 was revised with permission from Storch. While we replicated the majority of the questions, we extended our survey to provide insight into the perceived effectiveness of CEC, and to identify additional functions that may potentially be considered for CEC involvement. We used the same definition of a CEC as in the previous Canadian surveys (ie, any committee recognised as being primarily involved in ethical issues regarding patient care).
Each questionnaire included stamped, return envelopes that were coded to enable us to identify non-respondents. Non-respondents were sent a follow-up letter approximately 4 weeks after the survey. The questionnaires themselves did not have any identification marks to ensure that all responses were anonymous. Our survey was originally written in English and then translated into French, which was verified by a second translator. Research ethics approval for this study was obtained from the Memorial University of Newfoundland's Human Investigation Committee.
Before the mailing of surveys, CEO of all identified hospitals were sent a letter explaining the study to encourage participation. Approximately 2 weeks later, the surveys were sent directly to the hospital CEO, who was asked to verify that their hospital had 100 beds or more and that some of those beds were for acute care. They were asked to forward the questionnaire to the chairperson of their CEC for completion, or if they did not have a CEC, to complete a few of the questions as indicated and to return the survey.
Data collected were entered into SPSS, version 15.0 and analysis provided descriptive statistics. Qualitative data collected from open-ended questions were collated and described in words.
Results
Sample
Two hundred and sixty-five surveys were mailed in March 2008. The last survey was returned in September 2008. A total of 126 completed surveys was included in our final sample, for a usable response rate of 51% (10 surveys were excluded because the hospital did not have acute care beds). Of the completed surveys, 14 were from Atlantic Canada, 37 from Quebec, 44 from Ontario, 30 from western Canada and one survey had no region identified. The mean bed count was 406 and the mean number of employees was 2793 for our sample of hospital organisations. One hundred and five respondents reported that their hospital had a CEC, one said that they had a different model with an onsite clinical bioethicist and team assembled as needed, and one hospital was developing a committee for a total of 107 respondents (84.9%) with a functioning CEC or a CEC in development. Nineteen respondents reported that they did not have a CEC, which included one hospital that used regional resources. Almost a quarter of the respondents with a CEC had a committee with responsibilities for more than one site, indicating the trend in the 1990s for more than one hospital to consolidate under one organisation. More than half of these committees (59.2% of 98 respondents) were established in the past 10 years, with the earliest CEC formed in 1966.
Membership and size of CEC
The total number of committee members ranged from five to 26 (mean 14.2, SD 4.1). Most CEC included administrators, bioethicists, clergy or pastoral care workers, community representatives, direct care nurses, hospital board members, lawyers, nurses in management or education positions, psychologists, social workers and therapists (see table 1). Some CEC included pharmacists, client relations/parent and patient representatives, as well as professional practice leaders, dieticians and librarians.
Percentage of CEC with at least one member from various occupational groups
Respondents stated that, in most cases, the current representation of diverse groups was either ‘sufficient’ or ‘too few’. There were very few reports of ‘too many’. Eighty-seven per cent of all respondents identified the importance of community representatives on CEC.
Procedures and practices
Selection and training
Most committees ask or seek new members through volunteers (24.5%), appointments (22.6%), or a mixture of volunteers and appointments (1.9%). Less than half or 43.8% of those who responded (n=105) reported that their committee members receive ‘special training’ when they joined the committee, but 72.6% of those who responded (n=106) reported that there is a need for ‘special training’ before becoming a member of a CEC.
Frequency of meetings
Only 6.7% of 104 CEC reported no regularly scheduled meetings. More than half of the CEC (91 respondents) met at least 10 times per year (63.8%), whereas a quarter (24.2%) reported that they met six or fewer times per year. Twelve per cent did not report the frequency of meetings.
Minutes
The vast majority (97.2%) of respondents (n=106) reported that the minutes of the ethics committee are recorded.
Role of the committee
Of 104 respondents, a majority (87.5%) indicated that the role of the CEC was primarily advisory. Most (94.2%) reported that decisions made by the ethics committee were not binding.
A large percentage (96.2%) of 105 respondents reported that attending physicians could refer an issue to the committee. Also, many reported that staff (97.1%), consulting physicians (94.2%), administrators (92.4%) and patients or families (82.9%) could refer an issue to the committee.
Respondents (n=125) indicated that ethics consults were performed by an ethicist (24%), the CEC (32%), requesting assistance from an ethicist or ethics committee from another organisation (4.8%), both an ethicist and the CEC (11.2%), or both a CEC and an ethicist or ethics committee at another organisation (18.4%). Only 8% of respondents reported that ethics consultation services were unavailable.
Functions of CEC
As shown in table 2, the most frequently reported CEC function was planning ethics education both for CEC members and health professionals. Most committees also provided counsel and support for physicians, nurses and health professionals. Furthermore, 62% of CEC were also providing counsel and support to patients and families.
Percentage of CEC reporting on specific functions
Perceived effectiveness of CEC
We asked respondents to rate the overall effectiveness of their CEC as well as to rate the CEC effectiveness relating to 13 key functional areas. There were eight of the 13 key functions for which the combined percentage ratings of ‘very effective’ and ‘somewhat effective’ categories was higher than 50% (see table 3, functions 1–8). Many of the CEC, 35–43%, were not involved in evaluating the effectiveness of their committee or in monitoring the quality of their ethics consultation services. The majority of CEC identified that ‘making decisions about continuing life support’ was not applicable to their committee function. This supports the previous data from table 2 that few CEC in 2008 are involved in end-of-life decisions because most committees are primarily advisory in nature. It is also interesting that issues around resource allocation are not seen to be in the purview of CEC.
Percentage ratings of CEC in overall effectiveness and in 13 key functions in 2008
Perceived impact of CEC
We asked respondents, who were the chairperson of their CEC, their perception of the impact of CEC on their organisation. Overall, CEC were considered to have a beneficial impact on the organisation, with at least 54% of chairpersons reporting a beneficial effect in seven of eight areas (see table 4) and no one reporting detrimental effects. Interestingly, only 23% of respondents reported that their CEC had a beneficial impact on providing a form of legal protection for hospital and medical staff.
Perceived impact of CEC on their organisations
Areas for CEC involvement
Finally, we asked all survey respondents, including those who did not have a CEC in their hospital, to assess what areas they believed a CEC should be involved in. Table 5 shows that virtually all respondents thought that CEC should be involved in identifying the need for ethically related clinical policies and providing staff with current information about ethical problems. Almost 60% indicated that CEC should be involved in resource allocation and 29% in human resource issues. There was little support for the evaluation of patient competency or enforcing policies.
Areas where CEC should be involved
Finally, respondents were asked to list alternatives that may service a hospital as well as or better than a CEC. Of those who responded (n=105), 39% suggested alternatives to CEC, whereas 25% were uncertain about alternative structures. Suggestions for alternatives included the following: clinical ethicists on staff (n=16); multidisciplinary teams or professional practice groups (n=6); ethics board or forum (n=5); ‘hub and spoke’ model (n=4); quality improvement services (n=3) and legal services (n=2).
Discussion
As this 2008 survey used a similar questionnaire to Canadian surveys in 1984 and 1989,2 3 our findings provide an update on the structure and function of Canadian hospitals. Our findings show an increase in the number of Canadian hospitals with ethics committees, with 85% of respondents reporting they had a committee compared with 58% in 1989 and 18% in 1984.2 3 The wide variation in the size of committees and the composition of their membership has continued but there were fewer administrators (77% vs 94%) and board members (37% vs 59%), but more bioethicists (66% vs 41%) on committees in 2008 compared with 1989, and more lawyers (49% vs 36%) compared to 1984 (lawyer data not available for 1989). As nurses often have detailed knowledge of clinical situations and therefore may be able to assist committees in identifying where education, counselling and support, and policies are needed, their exclusion from even a small percentage of CEC (5.7%) is noteworthy and puzzling. Interestingly, 28% of CEC did not have a community/lay member on their committee, but 87% of respondents felt there was a need for community representation. Also, most CEC members are no longer direct appointments as was the case 20 years ago (23% in 2008 vs 75% in 1984). Our findings suggest there is a perceived need for special training for ethics committee members. Whereas less than half of respondents reported that their committee members received special training, almost three-quarters reported there was a need for such training.
There is evidence that CEC meetings have become more regularised and formalised over time, with almost all committees keeping minutes (97% in 2008 vs 92% in 1984) and having regular meetings (93% in 2008 vs 70% in 1984). However, 24% of committees reported that they met six or fewer times a year. It is possible that committees that meet infrequently have an inactive agenda or are still trying to identify how they can be effective.
Similar to previous surveys in Canada, ethics education for CEC members and health professionals is a key function of CEC, followed by counselling and support to healthcare personnel.2 3 There was less emphasis on functions related to policies and procedures in 2008 than there was 20 years ago (61% vs 85% in 1989).3 As in 1989,3 only a handful of committees reported making decisions about continuing life support (16% in 2008, 13% in 1989). Consistent with previous Canadian surveys,2 3 the majority of CEC (88%) reported that their role was primarily advisory, with 94% reporting that their decisions were not binding.
Of interest is that 25% of CEC chairpersons responded that their committee deals with resource allocation issues and 17% with human resource issues, an indication that there is a trend for these committees to be involved in matters beyond the traditional focus on clinical issues. Indeed, if these committees are to be viewed by hospital employees as effective in developing an ethical organisation, they may need to be active in helping all aspects of organisational functioning to be viewed as ethical. This idea is supported by the finding that 83% of respondents thought that their committee should be involved with organisational ethics, 59% with resource allocation and 29% with human resources. McDonald et al18 describe organisational ethics as a new field of enquiry in bioethics, and describe the experience in one Canadian hospital in which the ethics committee mandate was changed to a focus on organisational ethics, with the development of a clinical ethics consultation service.
Our survey also asked respondents, who were chairpersons of CEC, to rate the effectiveness and impact of the CEC and to identify areas in which CEC should be involved. In rating effectiveness, our results suggest that CEC are perceived to be most effective in the domains of education, counselling and support, and providing advice on policies and procedures, but not as effective in areas of monitoring and evaluation. Over 50% of CEC reported that their committee was not effective in monitoring its own effectiveness or that this function was not applicable. This finding may point to a need for CEC to develop ways of evaluating their outcomes, and may explain why the vast majority of respondents (71%) rated their CEC as ‘somewhat effective’ as compared to ‘very effective’.
In rating the impact of their ethics committee, chairpersons identified that the greatest success is in providing a forum to discuss ethical issues, and the area of least impact is in providing a form of legal protection for hospital and medical staff. While legal protection may be an outcome of ethics consultations, it is probably not one of the primary objectives of the committees. However, providing an opportunity for health professionals who usually have less power than physicians in decision-making, to air disagreements, give input and receive explanations should be an objective of these interdisciplinary committees. Since 17% responded they had no impact in helping these health professionals, this suggests an area for improvement for the committees.
Only 67% of ethics committee chairpersons in this study thought that CEC should provide counselling and support to families, with 62% of CEC reporting that they provide this service. Fifty-eight per cent of respondents also thought that CEC should be involved in mediation with families and healthcare teams. This is interesting because many of the conflicts between families and healthcare teams may not be about ethical issues and some may involve communication issues. It could be that ethics committee members have developed expertise in conflict resolution that they enjoy using and that others within the hospital have come to draw upon as needed. McLean19 notes that a dispute resolution function requires a focus on procedures and therefore steers a committee in the direction of legal, rather than ethical, considerations. If this is the case, it may be necessary for there to be a separate process for dispute resolution, once the issues in a case have been clearly delineated, rather than giving the ethics committee a legal purpose.
Limitations
One limitation of this study is the response rate to the survey. While we implemented a number of procedures to maximise the response rate, we had a lower response rate to our national survey in 2008 (51%) compared with surveys of Canadian CEC in 1989 (85%) and 1984 (91%).3 4 Therefore, our results suggesting that the percentage of Canadian hospitals with a CEC has increased substantially may be inflated. Also, chairpersons were the respondents to the surveys and thus evaluated the impact of their committee. As with all self-report instruments, bias may be present.
Conclusions
CEC have evolved over the past two decades and are increasingly being adopted within hospitals. Whereas education, counselling and support are the primary functions of CEC at present, research is needed on how best to define what the scope of activities of CEC should be in order to meet the needs of hospitals in Canada and elsewhere. Also, more research is needed on the actual outcomes to patients, families, health professionals and organisations from the work of these committees in order to support the considerable time committee members devote to this endeavour.
Acknowledgments
The authors would lik to thank all the hospitals who participated in this study. Thanks to Joanne Smith-Young for coordinating this survey, to Sandra Loveless and Hui Xiong for their research assistance, and to Dr Lynn Cloutier and Professor Anne Thareau for their help in translating the survey into French.
References
Footnotes
Funding This study received funding from the Canadian Institutes of Health Research (CIHR) Ottawa, Ontario, Canada.
Competing interests None.
Ethics approval This study was conducted with the approval of the Memorial University Human Investigation Committee, St John's, Newfoundland, Canada.
Provenance and peer review Not commissioned; externally peer reviewed.
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