Objective The purpose of this article is to investigate the need for ethics support in Dutch healthcare institutions in order to understand why ethics support is often not used in practice and which factors are relevant in this context.
Methods This study had a mixed methods design integrating quantitative and qualitative research methods. Two survey questionnaires, two focus groups and 17 interviews were conducted among board members and ethics support staff in Dutch healthcare institutions.
Findings Most respondents see a need for ethics support. This need is related to the complexity of contemporary healthcare, the contribution of ethics support to the core business of the organisation and to the surplus value of paying structural attention to ethical issues. The need for ethics support is, however, not unconditional. Reasons for a lacking need include: aversion of innovations, negative associations with the notion of ethics support service, and organisational factors like resources and setting.
Conclusion There is a conditioned need for ethics support in Dutch healthcare institutions. The promotion of ethics support in healthcare can be fostered by focusing on formats which fit the needs of (practitioners in) healthcare institutions. The emphasis should be on creating a (culture of) dialogue about the complex situations which emerge daily in contemporary healthcare practice.
- Clinical ethics
- clinical ethics committees
- mixed methods
- ethics consultation
- moral case deliberation
- ethics committees/consultation
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- Clinical ethics
- clinical ethics committees
- mixed methods
- ethics consultation
- moral case deliberation
- ethics committees/consultation
Clinical ethics is an emerging field, including various means of ethics support, such as ethics committees, ethics consultants and moral case deliberation. Our working definition of clinical ethics support is: a functionary group or body which is explicitly involved in (the organisation of) ethics in healthcare institutions. The literature describes methods of ethics support1–3 and characteristics of ethics support, like access and workload.4–7 Implicitly, this literature presupposes that there is a need for ethics support. Some studies report empirical findings about the need for ethics support.8–10 For example, 89% of the UK trust respondents were in favour of ethics support8 and 87% of British hospital CEC chairpersons expressed a need for ethics support.9 In Canada, 95% of the healthcare providers believed ethics support would answer a need.10
The need for ethics support is related to the complex, value-laden nature of clinical decision making, the pluralistic societal context and economic constraints.11–13 However, there is little empirical evidence available about underlying reasons for the need for ethics support. Many of the previous studies did not systematically study why there is a need for ethics support. Moreover, ethics support such as ethics committees are not often consulted in practice. They receive a limited number of cases per year9 or meet rarely (24% of committees in Canada reported that they only met six or fewer times a year), probably because they have an inactive agenda or are still trying to identify how they can be effective.14 Also, ethics consultation services (ECS) have a low number of consultations (22% of the ECS in US-Hospitals performed no consultations in 2006, 90% performed fewer than 25).4
The aim of the present paper is to investigate the need for ethics support of Dutch healthcare institutions and to understand which factors are relevant in explaining the presence or absence of such need. We used a mixed methods design, including two survey questionnaires, two focus groups and 17 interviews. This article focuses on the perspectives of board members and ethics support in Dutch healthcare institutions. The assumption is that they have a key role in facilitating and practically organising ethics support, and are only willing to facilitate ethics support if they see an intrinsic need for it.15 16
Quantitative and qualitative methods were used in a mixed methods design.17 18 The mixed methods design was chosen as it enabled us to collect a broad array of quantitative information on the need for ethics support and helped to gain qualitative information about the reasons for such (lacking) need.
First, two survey questionnaires with closed and open questions were used to assess the need for ethics support and to explore underlying motivations. The first was addressed at board members as they have an important role in facilitating ethics support. The second questionnaire was directed at ethics support staff, as they have an important role in the actual organisation and implementation of ethics support in the institution. The data of questionnaires 1 and 2 were analysed with SPSS 15 for the closed questions and a thematic content analysis of the open ended questions. This means that themes were constructed from the data set. The answers to open questions were read line by line and labelled, compared and then clustered into themes. After reordering them several times, we came to the current categorisation: three pros and three cons.
Second, the analyses of questionnaire 1 were used as input for two focus groups in order to validate and further discuss the themes. Third, during the whole research process we conducted interviews (n=17) to discover personal opinions and experiences with ethics support and the need for it.
All Dutch healthcare institutions (N=2137) received the first survey questionnaire, directed at the board. Board members (BM) were not specified, assuming that BM would be able to assess themselves which member was most appropriate to respond to the questionnaire. The questionnaire identified the function of the respondent; therefore we know which BM responded. Various settings were included: hospitals, institutions for people with an intellectual disability, mental health care institutions, and institutional care of older people. The second questionnaire was directed at ethics support staff, meaning people with expert knowledge for example, chairs of ethical committees or spiritual caregivers involved in organising, implementing or executing ethics support. There is difference in number (638 respondents of questionnaire 1 vs 515 designated ethics support staff members) because not all respondents of questionnaire 1 designated a best informant. Table 1 shows that 62% of the respondents of questionnaire 1 and 55% of questionnaire 2 were from institutions involved in the care of older people. Equally, representatives from a variety of settings participated in the focus groups and interviews.
Questionnaire 1 was developed by reading literature, talking to experts (n=7) from different sectors and testing the questionnaire with BM and experts (n=9) from different sectors. Participants of the pilot indicated that our questionnaire was too long and that questions couldn't be answered by BM. We searched for ways to get as much information as possible in a short questionnaire. The main topics we wanted to ask the BM were included in the short questionnaire of Slowther.8 We added open ended questions about the goals of ethics support, the desirability of ethics support and existing support mechanisms. An additional advantage of using Slowther’s8 questionnaire was that we were able to do an international comparison.
This (postal) questionnaire was sent to all Dutch intramural healthcare institutions, listed at the Dutch Ministry of Health Welfare and Sports. The data collection phase took place between April and July 2008, including two reminders and a telephone follow-up. During the telephone follow-up it turned out that the 2137 individual healthcare institutions were part of 864 unique legal bodies. These are umbrella organisations with a legal status. Hence, there are two response rates of this first questionnaire, namely 30% (638/2137) at the level of individual institutions and 56% (485/864) at the level of unique legal bodies.
Questionnaire 2 was also developed by reading literature and conversations with experts (n=12) from different sectors. These were for example persons with methodological experience in (digital) surveys and persons with substantial knowledge of ethics support. This questionnaire was tested with 12 (other) experts from different fields, who completed the questionnaire and gave feedback by email. This digital questionnairei included the questions BM were unable to answer in the pilot and the questions focused on specific ways of ethics support, and covered themes like content, participants, integration and evaluation of ethics support.
This digital questionnaire was sent to all ethics support staff members which were designated by the respondents of questionnaire 1. The data collection took place between April 2009 and July 2009, including two reminders and a telephone follow-up. The response rate of this second questionnaire is 48% (247/515).
We organised two focus groups with persons who had answered the questionnaires (summer 2009); both groups had a mixed composition of BM and ethics support staff (totalling 22 participants). The focus groups took two hours each. The participants received a report of the analysis of the two questionnaires. The dialogue focused on the need for ethics support, goals of ethics support and (in) formal ways of ethics support. The participants received the summary (member check) of the meeting and their (sometimes extended) reactions and comments were integrated in the analysis.
Furthermore, we conducted interviews (n=17) during the whole research process. First, inventory interviews with pioneers in the field of clinical ethics to explore the national field (n=6). Second, in-depth interviews with best informants and BM with an established ethics support service in their organisation to understand how ethics support works in practice (n=7). Third, open interviews with (international) experts in the field of clinical ethics to mirror the Dutch findings to the international context (n=4). Themes included the need for, goals of and (in)formal ways of ethics support.
The data were analysed separately and then transformed for further analysis and comparison (cross over track analysis).18 This means that questionnaires 1, 2, the interviews and focus group were initially analysed separately. A second step in the analysis was to compare the themes found in the first analyses with each other. The closed questions were analysed by using Micorsoft Excel and SPSS 15. This entailed a descriptive analysis including frequencies, cross tabs and graphs. Subsequently, a thematic content analysis was used for the answers to the open ended questions in the questionnaires, and the transcripts of the interviews and the focus groups. We followed an open coding process by reading the qualitative material line by line and labelling them with (sub)themes. Next, the themes were connected and clustered and sometimes relabelled. Finally, relations were visualised in a mind map and discussed within the research team, within a meeting of the advisory committee and within the focus groups. The interviews were analysed continuously, following the findings, searching for corroboration and deeper understanding.
Respondents of questionnaire 1 (figure 1) were mainly board members (BM) or directors (68%). Other respondents belonged to the middle management (21%), the general staff (6%), were ethics support staff (4%) or healthcare providers (1%). Examples are, respectively: location manager, policy adviser, member ethics committee and nursing home physician.
Respondents of questionnaire 2 (figure 2) were mainly ethics support staff (49%), such as a member of an ethics committee, facilitator of moral case deliberation, ethics consultant. Other respondents were BM/director (18%), middle management (17%), general staff (12%) or healthcare provider (4%). Ethics support staff sometimes combine functions—for instance, being ethics support staff and healthcare provider, or ethics support staff and general staff.
Need for ethics support
Sixty eight per cent of BM (questionnaire 1) agree that ethics support is desirable. In the answers to the open questions, three relevant factors emerge: the complexity of contemporary healthcare, the contribution to the core business of the healthcare institution, and the need for structural attention to ethical issues (table 2).
Complexity of contemporary healthcare
A first explanation for the need for ethics support refers to the complexity of contemporary healthcare. Responses to questionnaire 1, for example, indicate that the ageing population and the empowerment of care receivers (patients and their families) require ethics support: ‘Care questions are complex, people empowered and family more explicitly manifests themselves’.
Respondents see ethics as an inherent part of contemporary healthcare processes and indicate that ethics is not limited to medical ethical issues like euthanasia. Questionnaire 2 reinforces these findings: ‘Cardiologists, nurses, patient and family often look from a different angle to a patient with heart failure. Hence, communication is confusing. Therefore moral case deliberation is a challenge for us now.’
Sometimes respondents refer to their setting—for example, mentioning that in mental health care there are many ethical questions. Participants in the focus groups stress that ethics support should not only be used as a way to legitimise, but that it should be visible in daily activities and integrated in all veins of the organisation. Interviewees express a need for participation of all stakeholders in ethics support, including care receivers (patients, family members) and health insurers.
Contribution to the core business of the institution
A second explanation for the need for ethics support is its contribution to the core business of the organisation. Questionnaire 1, for example, shows that a multidimensional approach to ethical dilemmas is deemed to contribute to awareness and quality of care: ‘It is important to consider ethical problems from several points of view and translate results into policy’ and:, ‘This (ethics support) strengthens the position of employees and the quality of care for clients’.
Questionnaire 2 shows that an ethics committee may provide a structure for addressing ethical issues, an ethics consultant may help with agenda setting and moral case deliberation may increase reciprocal understanding: ‘It would be valuable to do this (moral case deliberation) together in order to know each other's vision and come to a more shared vision’.
In the focus groups these findings are confirmed. Participants agree that ethics support, such as, moral deliberation, may stimulate a (pro)active attitude towards ethical issues. An interviewee mentions that ethics support can be an important facet of policy, on the same height as finances, material conditions and personnel.
Need for structural attention to ethical issues
A third explanation for the need for ethics support is that it provides structural attention to ethical issues. Although existing, more informal, ways of ethics support are considered important, regular and structured ways of attention for questions about good care can have an added value. Often, there is little or only ad hoc attention for ethical questions and therefore ethical aspects stay implicit: ‘Daily activities offer little room to experience a structured exchange of views on ethical issues’ (questionnaire 1).
Questionnaire 2 illustrates that ethical questions should be more explicit in order to enable reflection: ‘In daily practice there are many ethical dilemmas which are not made explicit nor is there reflection about it’.
Participants of the focus groups agree that structure is important, because it makes ethical issues visible and enables moral learning. Interviewees explain that structural ethics support diminishes ad hoc solutions and fosters effectiveness: ‘Some people tend to be more able to make ethical aspects visible than others and that determines group effectiveness. So, then (if there is no ethics support) it is a matter of chance whether a group is effective or not.’ (Director, mental health care).
No need for ethics support
The previous paragraph showed that many healthcare institutions experience a need for ethics support. Yet 32% of the BM disagree with the statement that ethics support is desirable in their institution (questionnaire 1). Specific kinds of ethics support are not deemed necessary (questionnaire 2). A considerable number of respondents say that their institution does not have an ethics committee (49%), moral case deliberation (56%) or an ethics consultant (85%), and, moreover, many report that ethics support is not being missed. For example, 68% of respondents say not to miss an ethics committee (table 2).
Aversion of innovations
The qualitative findings of questionnaire 1 show specific ways of ethics support are not missed, because there is an aversion for innovations and current ways are enough: ‘Of course this should be organised when necessary, but we have enough expertise and do not want ‘another’ separate service’, ‘Ethical/moral consideration should be a part of regular contact moments like multidisciplinary team meeting or discussion of progress’, ‘Informal contacts with spiritual counsellor and psychologist is enough’.
These may include both formal and informal forms of ethics support. Respondents refer to the consultation function of psychologists, pastoral care workers and other staff members as well as to management team meetings and multidisciplinary team meetings as alternatives for (formal) ethics support. Furthermore, questionnaire 2 illustrates that ethics support is not seen as requiring a separate meeting: ‘Existing moral case deliberation is not seen as a separate meeting but is interwoven with the development of the treatment plan’.
The focus groups and interviews confirm that informal ways of ethics support are important.
Negative associations with the notion of ethics support
BM and ethics support staff refer to negative associations with the notion of ethics support as explanation for the absence of need. Respondents to questionnaire 1 mention there is no need for a separate service but for integral responsibility because professionals should always ask themselves what is good in a specific situation: ‘Another isolated service: nonsense! Ethics should be in the whole capillary system of the organisation and not isolated. An ethics support service would be too much distance from work floor.’
Respondents to questionnaire 2 stress that a separate service for ethics is problematic and they note that ethics committees are distant from practice: ‘Access to the committee is not found easily by employees and employees have the image that an ethics committee is fairly heavy’.
In the focus groups this is affirmed; participants notice that the word ethics support ‘service’ does not fit to the Dutch context because of its connotation with a formal body having a high threshold. It is also mentioned that the words ‘ethics’ and ‘moral’ have a negative association for many healthcare providers. An interviewee illustrates this negative association with ethics, by referring to an ethicist who was unable to talk in ‘normal’ language.
Within the previous committee there was an ethicist and no matter how she tried, she didn't succeed in transferring in normal language, even to physicians. After that education you easily end up in that. They always think in terms like autonomy and these are so theoretical that you do not reach the people you want to. (Ethics committee member, institution of older persons)
Organisational factors may also explain the lack of a need for ethics support. Respondents of questionnaire 1 mention resources, size and setting as explanations: ‘Within our care home [for older people] ethical issues in general are less complex and more incidental than in, for example, hospitals’.
Respondents notice that some institutions have other priorities than ethics support, smaller institutions may less need ethics support than large institutions, and care of older people may have ‘easier’ questions which may not require ethics support. A few respondents indicate that they do not have ethical questions (daily) or that ethics support is not needed because everything is clear given the spiritual background of the organisation. Questionnaire 2 suggests that care institutions for older people often are small, which might imply a link between size and sector. Participants in the focus groups suggest that an institution with a business-like approach to healthcare, will probably not invest in ethics support. An interviewee mentions that an institution may experience a need for ethics support, but not have the resources to facilitate it: ‘The board says: of course it is important to talk about ethical issues, but we do not have the means for it. While it should be facilitated by the board, you cannot only leave it to managers or employees.’ (Board secretary, mental health care).
Our study contributes to the field of clinical ethics by providing a robust evaluation of the need for clinical ethics support in Dutch healthcare and the potential barriers to its development. While previous studies report a high prevalent need for ethics support8–10 our findings show that the need for ethics support cannot simply be assumed. In the Netherlands, two thirds of board members see a need for ethics support. However, one third of the responding board members see no need for ethics support in their institution.
Respondents who see a need for ethics support, tend to view this as an inherent part of care, enabling the institution to deal with complexity. They seem to regard ethics support as a natural development within their institution19 Mechanistic structures and top down ways of solving ethical issues are regarded as non-desirable in the Dutch context. Deliberation-based ethics20 in which there is room for negotiation about what's good in a specific situation, is preferred over advice-based ethics in which an ethicists says what's the best thing to do.
Our findings illustrate that in the Netherlands ethics support is used for creating a (culture of) dialogue on the complex issues which arise daily. Instead of an emphasis on financial or legal considerations, ethics support is used to promote core values of (practitioners within) the organisation. These healthcare institutions which are in favour of ethics support focus on creating structural ethics support as a reaction on the current culture of control19–21 which is, for example, characterised by management of output and bureaucratic quality assurance procedures.
Our respondents were quite articulate about the type of ethics support they wanted or not. An additional ‘service’ in terms of another institutional body or function was seen as undesirable. Related to this is the finding that certain concepts in relation to clinical ethics are confusing. The international literature uses the term ethics support service, but this term is not useful in the Dutch context because the word service has another meaning (unit, ward). Therefore, we decided to use the term ‘ethics support’ instead of ‘ethics support service’ in the second questionnaire, focus groups and interviews. Furthermore we explicitly defined within the questionnaires our working definition of three possible formats of clinical ethics support: ethics committees, moral deliberation and ethics consultant. In the second questionnaire we checked with the respondents if they worked with the same definitions and a majority affirmed our definitions.
Since admitting a need for ethics support or denying it also depends on the goals associated with such support, we recommend further research on the goals of ethics support as seen by healthcare institutions. Since various parties have different perspectives on ethics support, we would recommend investigating the needs of stakeholders other than board members and ethics support staff. For instance, the needs of care providers (including physicians, nurses and other professionals) and recipients of care (patients and families) within the institution. Likewise, it would be relevant to know the needs for ethics support envisaged by parties outside the institution, such as national policy makers, healthcare insurance companies and professional and patient organisations.
We would like to thank all participants of the research project for their openness and effort and the Dutch Ministry of Health, Welfare and Sports for making this research possible.
Funding This research has been possible partly due to a grant from the Department of Ethics at the Dutch Ministry of Health Welfare and Sports.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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