In the Netherlands, CES services mainly consist of moral case deliberation (MCD) and ethics committees (Dauwerse et al. 2014). In Dutch hospitals, ethics committees are the most used type of CES. MCD is available in about half of Dutch hospitals and in two-thirds of the mental health care institutions (Dauwerse et al. 2014). Ethics consultants are sometimes available. Like in other countries, CES practitioners often feel isolated in their health care organization, trying to advocate the importance of (funding for) ethics support and trying to organize CES services by themselves or in a small team. The lack of shared knowledge and agreement about the quality of the various types of CES can lead to fragmentation and CES practitioners reinventing the wheel regarding CES services.
In order to meet the need of mutual exchange and support, NEON was established in 2014. NEON was founded in the context of a research project at VUmc (Amsterdam UMC) that started 1-12-2013, funded by the Ministry of Health of the Netherlands. When the research project ended (1-08-2018), the network continued as an independent foundation. Participants in NEON include about 260 individual CES practitioners working 160 Organizations. This includes members of ethics committees, facilitators of moral case deliberation, ethics consultants, managers of CES, academic ethicists, researchers, health care inspectors and policy makers in a variety of health care domains (e.g., hospital care, mental health care, care for the disabled, nursing care, youth care).
In the following, we describe three activities organized within NEON, focused on conceptualizing and fostering the quality of CES, and reflect on the way it fits with a responsive evaluation methodology.
Organizing expert meetings and national conferences to facilitate a dialogue on quality of CES
To start encouraging joint reflection and knowledge exchange on CES, the researchers of the research project at VUmc (Amsterdam UMC) organized three expert meetings between 2013 and 2016. The meetings consisted of a core group, (about 25 people) of both CES theorists, CES practitioners in the Netherlands and other stakeholders (for instance, someone from the Dutch Inspectorate of Healthcare was present as well). The core group was selected through a snowball method and aimed to include a maximum of variety of CES stakeholders from different health care domains. In the meetings, the group was invited to formulate their views about the quality of CES and learn from each other. Two of the three meetings consisted of two days with a sleep–over to also stimulate informal relationships and get everybody away from their daily life. During the meetings the project group stimulated reflection and dialogue about the quality of CES, the goal of NEON and the desirability of developing quality characteristics for CES. Through the involvement from these CES stakeholders, we strived towards a feeling of co-ownership of both the process and the results of the project.
In the first expert meeting, (24–25 May 2014) a dialogue was facilitated on the quality of CES in a carrouselFootnote 9 around the following three questions: 1. What are the goals of CES? 2. What is the right strategy for organizing CES? And, 3. what do you mean by quality of CES? Next, a carrousel was facilitated in which we asked: Towards which possible products should the network strive? The following products were mentioned: 1. a handbook for CES; 2. a website; 3. a network; 4. a guild group that develops standards for CES and education and training; and 5. scientific output. In the afternoon, both brainstorms were deepened and refined in subgroups.
In the second expert meeting (27 October 2014), reflection on quality of CES continued. Preliminary findings from 24 interviews with CES stakeholders were presented, in order to be discussed and deepened by the attendants. The interviews were about actual practices of CES, the quality of CES and the criteria the respondents used to determine this. Also, best practices regarding CES were shared by the participants of the meeting. The sharing of best practices was considered inspirational and a good way to reflect and foster the quality of CES. During the third expert meeting (26 and 27 March 2015), a website was launched (see Launch of a website and publishing a national handbook on CES), featuring among other things practice examples of CES. Also, the attendants were challenged to formulate statements about the quality of CES, followed by a dialogue about these statements. In the afternoon, the content of the different chapters of the Dutch handbook for ethics support was decided upon (see Launch of a website and publishing a national handbook on CES).
Besides these three expert meetings, national conferences were organized for everyone working with CES on either a theoretical of practical basis. The annual national NEON conferences started in 2014 and continued over the years. Like the expert meetings, the national conferences were geared towards joint refection processes, knowledge exchange, getting to know each other, quality improvement of CES and co-steering NEON. In the plenary lectures, influential and inspirational speakers were invited to reflect on the quality or importance of CES from a certain theme. In the workshops, the NEON participants themselves were asked to provide a workshop that they thought would be insightful for others. In this way, the participants of NEON trained each other. There was plenty of room in the program for networking, and peer-supervision on moral case deliberation and implementing CES.
The expert meetings functioned in three ways. Firstly, they provided insights into the perspectives and views of stakeholders of CES within the Netherlands regarding the quality of CES. Secondly, the stakeholders were challenged to make their implicit viewpoints on the quality of CES explicit. (This experience included our own research group who also were active during the meetings). For instance, a member of an ethics committee was asked what she considered to be the discerning expertise an ethicist brings to the ethics committee. These kinds of questions provoked the attendants to actively reflect and engage in a dialogue about the similarities and differences with other types of CES.
Third, challenges and doubts were discussed about the rational for and the form of the NEON quality characteristics. For example, does a formulation of quality characteristics of CES lead to exclusion of certain CES practices and an increased regulatory or administrative burden for health care workers and managers? And does the term ‘criteria’ (used at the beginning of the process) somehow presupposes a norm which people should follow? These issues were discussed thoroughly and the direction of the project was altered accordingly. Consequently, the term ‘quality criteria of CES’ was changed into ‘quality characteristics of CES’ and it was explicitly stated that the NEON quality characteristics needed to inspire people to improve the quality of CES and not check, certify or judge CES. In this way, in line with a responsive evaluation methodology the stakeholders were enabled to both steer the direction of the network and the results of the process in dialogue.
Launch of a website and publishing a national handbook on CES
Based on the suggestions and experiences during the first expert meetings (see Organizing expert meetings and national conferences to facilitate a dialogue on quality of CES) a website was launched. On the website (www.hetneon.nl), all people who work in CES can present themselves with a picture, a short biography and contact details. In this way, CES practitioners can make themselves known and find each other. A quarterly newsletter highlighted new content on the website, new NEON participants and other CES related events (e.g., trainings, masterclasses and conferences) and job offers in CES in the Netherlands.
Also participants were invited to publish a practice example on the website to stimulate learning from each other’s practices since this was experienced as very inspirational at the meetings (see Organizing expert meetings and national conferences to facilitate a dialogue on quality of CES). A format was developed in which the participants were asked to answer a set of questions about their own practice example. We asked them: “Please write one or more reasons why this practice example was successful or why it wasn’t successful”. The question of why the practice example maybe wasn’t successful was purposively put in, since less successful CES activities are as informative as best practices of CES (although probably less inspirational). The project group asked to describe pitfalls that would be informative for other CES practitioners and which lessons could be drawn from their experience. Finally, we offered the possibility to attach forms, formats, or documents to the practice examples that can be downloaded from the website. In this way, CES practitioners can share their formats and do not need to reinvent the wheel by developing a form themselves (for instance forms for the evaluation of CES).
Besides a website, also a handbook was mentioned as a desired outcome of NEON at the first expert meeting (see Organizing expert meetings and national conferences to facilitate a dialogue on quality of CES). The handbook was supposed to be a very practical book to support CES practitioners with their CES activities in their health care organization. The content and structure of the handbook was developed in the third expert meeting, while participants jointly made an overview of the chapters of the handbook and the topics to be discussed in each chapter. Five chapters were proposed: 1. reasons for CES; 2. methods for CES; 3. competencies of CES practitioners; 4. implementation of CES; 5. the role of Board and management. Also, participants were invited to indicate in which chapter/topic they wanted to be involved.
Next, drafts of the chapters were written by the first author (LH), based on the information that was collected during the CES activities, the practice examples on the website, the conducted interviews, and the reports of the expert meetings and national conferences. The format of the handbook was meant to be practical and easy to read, providing context, practice examples and thick descriptions of CES, including a ten step plan for implementation of CES and a large number of forms and formats developed by the NEON participants as an appendix. After each paragraph a set of quality characteristics was formulated based as a succinct formulation of the main point about quality of CES in that particular paragraph.
After this, the drafts of the chapters were sent to CES practitioners and participants of NEON who had indicated they wanted to be involved in that chapter. We also purposively approached certain experts in a particular CES activity if we felt we missed the expertise in the group of commenters on a particular chapter (e.g., on the topic of moral counseling and the topic CES in education). We received rich information back in reaction to the drafts, in the form of critical comments, suggestions, remarks, and examples from CES practices. The comments were placed in one document and the project group processed all the remarks.
The handbook was an important step to conceptualize and verbalize the variety of views on the quality of CES. It was emphasized in the handbook that both the content of the book and the specified quality characteristics were not meant as the final and definitive view on the quality of CES. Yet, we did feel the need to summarize all the knowledge we had jointly generated up until then, by stimulating these exchanges and refection about the quality of CES. By publishing them in a handbook, we made the variety of views explicit and summarized the points that CES practitioners agreed upon. In writing the chapters, we encountered a surprising unity in thoughts but also crucial points of divergence in views. For instance, regarding the implementation of CES, some CES practitioners had experienced the importance of support from the board of directors of the health care organization, and stated that without this support you should not even start CES. Other CES practitioners preferred a bottom up approach, in which CES practitioners just start with a micro experiment in one team and then gradually build a program from there. In the handbook, the pros and cons of both approaches were described, without expressing a preference of one over the other; instead, the need to balance these approaches was emphasized.
By co-creating the handbook together with the stakeholders and developing a website on which all the CES practitioners can present themselves, we acted in line with responsive evaluation methodology. Instead of offering abstract theorized knowledge regarding the quality of CES, we focused on unlocking the experiential knowledge of CES practitioners in the field by publishing practice examples on the website and offering contextualized and detailed information in the handbook, in order to inspire and support other CES practitioners.
Organizing responsive quality assessments
Co-developing quality characteristics of CES was important, yet in the end the question remained how they actually could be used to contribute to fostering the quality of CES in health care organizations. Therefore, in line with responsive evaluation methodology, the meaning and usefulness of the set of quality characteristic was explored within actual CES practices in different health care organizations. The overall objective was again to reflect upon and foster the quality of CES in Dutch health care organizations through a mutual learning process, to stimulate a learning network of CES practitioners, and to evaluate the quality characteristics of CES themselves.
In this phase of the project, 11 health care organizations participated. Due to one withdrawal from the project, 10 health care organizations completed the responsive quality assessment. These health care organizations represented different health care settings. The project included four institutions for people with disabilities, two institutions for people with mental health problems, two academic hospitals, and two general hospitals. The project group used the term ‘responsive quality assessment’ rather than ‘audit’, as the assessment was based on a dialogical, open, responsive way of assessing the quality of CES in line with a responsive evaluation methodology in which CES practitioners themselves reflected upon the quality of ethics support within their own and each other’s health care organizations.
In the quality assessment, 22 CES practitioners participated. First, we organized a meeting among them to build relationships and to train them in how to responsively evaluate each other’s practices. Before assessing another institution, CES practitioners collected information on CES services within their own organization. In this way, the reflection on their own practice started on the fly, describing their own practice in detail. They were also invited to write a reflection report on CES services within their own organization. This information was sent to the CES practitioners visiting their organization. Subsequently, pairs of CES practitioners from two different organizations would visit a third organization where they would assess the quality of CES. When approximately one-third of the visits had taken place, an interim meeting for all participants was organized by the research team to reflect on the process. After each visit, visiting CES practitioners wrote a report that was shared and discussed with the hosting CES practitioners during a feedback meeting or by email (Figure 1).
Participating CES practitioners had a desire to learn from others and expressed the hope that, through participating in the assessment, their CES work would be acknowledged within their own organizations as relevant to fostering quality of care. The practitioners observed that CES often, yet not always, lacks a formal status within organizations, as well as a substantial budget and clear responsibilities and structure. As a consequence of participating in the responsive quality assessments, respondents perceived a number of improvements regarding CES in Dutch health care organizations: acknowledgement of the relevance of CES; CES practices being formalized; the development of new CES-related activities; and increased reflection on existing CES practices (Van Baarle et al. 2019). Participants were motivated to further professionalize CES services and emphasized the need for a learning community through the Dutch network for CES (NEON).
A limited numbers of CES participants focused in their assessment on the goals and quality of the content of particular CES activities (such as statements about the quality of ethics committee meetings or their policies, advice and letters, or statements about the quality of the MCD facilitator or the arguments within a moral case deliberation). CES practitioners seemed more focused on the implementation of CES, legitimization of its existence, gaining support from upper management and solidifying CES services in their health care organizations than to make concrete what exactly quality of CES at the content level of the CES activities entails. This finding might be related to the fact that CES is still a relatively new field in the Netherlands. Elsewhere, we describe in more detail the challenges and learning experiences of this phase (Van Baarle et al. 2019).
In line with a responsive evaluation methodology, quality assessments by peers of CES practitioners were organized instead of experts assessing the field. Another finding relates to the functionality and usefulness of the CES quality characteristics. Although it was explicitly and repeatedly mentioned that the quality characteristics were not meant as an objective measurement but intended to inspire, some participants continued to interpret them as objectively prescribing “the right CES”, or as intimidating and even demotivating in the sense of “We can never live up to this full list of quality characteristics, why should we even start?”. To address this, we changed the tone of voice, and summarized and shortened the list of quality characteristics, emphasizing that the quality characteristics are meant as a heuristic instrument, stimulating a dialogue and refection on the quality of CES (Hartman et al. In Press).