Implementation in Bioethics: A Plea for a Participatory and Dialogical Approach

This article refers to:

The “Ought-Is” Problem: An Implementation Science Framework for Translating Ethical Norms Into Practice

Sisk et al. (2020) discuss an understudied but highly relevant subject: the relationship between developing ethical norms and the actual implementation of these norms. They argue that, in order to ensure that results of bioethics research also have practical relevance, implementation science needs the attention of bioethicists. Our comments regard the responsibility that Sisk et al. assign to the ethicist with regard to the implementation of their normative claims, and, most of all, their reliance on implementation experts in their framework on implementation.

First, we would like to address the view of the ethicist as someone who is to “support ethical actions,” and therefore should “collaborate with those who have expertise in implementing social change” (69), in order to fulfill the “essential purpose of ethics” (69). Bioethicists are not and should not always be concerned with establishing normative claims and translating them to an actual (change of) practice. Rather, the work of the ethicist may also concern critical inquiry or a preliminary exploration of a subject in order to identify and describe moral concerns or benefits, or instigate ethical reflection on a topic previously seen as unproblematic. Furthermore, ethicists may see it as their primary role to facilitate reflection and dialogs so as to foster the establishment of normative claims by others rather than doing this themselves (Metselaar et al. 2017). Thus, the imperative that bioethicists should be primarily concerned with developing norms and ethical actions based on these norms overlooks other roles of bioethicists.

Yet, we agree with Sisk et al. that at least a major aspect of the bioethicist’s work is the development of ethical norms, and that the bioethicist should pay close attention to the applicability of these norms in practice, as “ought implies can.” However, we would like to distinguish between taking into account the feasibility of norms, on the one hand, and ensuring their actual implementation on the other hand. It is questionable whether the ethicist should always take care of the implementation. In the framework that Sisk et al. present, multidisciplinary experts, including the ethicist, are leading in the implementation of norms, whereas stakeholders in practice have an auxiliary role. Sisk et al. focus on a multidisciplinary team that includes ethicists, educators, implementation scientists, and graduate students in ethics. Elsewhere, they mention those who have expertise in implementing social change as the main partners of bioethicists. In doing so, Sisk et al. remain expert-oriented in their framework for implementation. For instance, they seek to identify ethical norms and justify these through “dialectic argument among scholars,” only after which a “reality check” with stakeholders should ensure that the previous ethical deliberation is reflective of “frontline reality” (67, Table 2).

We disagree with this dominant role of experts and would like to argue for a user- and/or stakeholder-oriented approach, in which the implementation of normative claims primarily rests on an iterative process of co-creation. In this approach, stakeholders such as caregivers, patients, research participants, and family members are closely involved in every step of the development of the norm and its implementation. Hence, developing and implementing norms takes place in practice and with practice. Moreover, we maintain that this process should be thoroughly dialogical and participatory; not only because it will facilitate a more effective implementation process (Weidema et al. 2016), but also because in order to understand how to improve practice, we need the involvement of people immersed in that practice—from the very beginning and throughout the entire process (Metselaar et al. 2017; Molewijk et al. 2003).

The underlying assumption of a dialogical and participatory approach to implementation in ethics is that the (experiential) expertise of stakeholders is crucial, both in developing adequate norms and in translating such norms into interventions that are tailored to the needs and contexts of end users; in order to gain a good understanding, their concrete, detailed experiences and perspectives need to be investigated and exchanged. Dialogue is seen here as the primary vehicle for moral learning and developing practical applications to normative positions (Widdershoven et al. 2009). In practice, this may involve organizing focus or discussion groups, or creating a community of practice that forms the center of the implementation study. In this way, stakeholders’ experiences are not only used as a source for reflection by the ethicist; rather, stakeholders are involved in the process of reflection itself.

Thus, a responsibility of the ethicist is not only to initiate multidisciplinary collaboration, and take part in these collaborations, but also to facilitate dialogical processes through which norms are applied, interventions are developed, and, subsequently, implemented and disseminated. This entails a cyclical process in which stakeholders come to a shared understanding of their practice, how it can be improved, what an intervention may look like, and how it should be implemented to effect change.

As an example, we will shortly discuss the process of developing and implementing the High and Intensive Care-model in Dutch psychiatry, which emerged from the normative claim that coercion and restraint in psychiatry should be reduced, and was the result of a process of co-creation in which stakeholders in practice were actively involved.

In The Netherlands, during involuntary admission at a mental healthcare institution, patients frequently undergo coercive measures like seclusion. Seclusion is defined as “locking up a patient alone in a specially designed locked room, with or without consent.” With the aim to reduce the use of seclusion, a small multidisciplinary group, among which the ethicists, initiated a project to develop a new approach in acute psychiatry: High and Intensive Care (HIC).

After reviewing the literature and collecting best practices already in place in participating institutions, a larger core group of different stakeholders such as nurses, psychiatrists, patients, peer workers, family members, managers, and researchers were invited to dialogically develop the new model to improve the quality of care and to reduce seclusion. Core activities took place in three two-day meetings. In these meetings, the dialogue was facilitated by discussing topics in small groups followed by a plenary presentation of the findings. “Dialogue walks” were organized to further encourage the exchange of perspectives and consensus on how to accomplish a change of practice. Translating the primary normative claim (“seclusion in psychiatry should be reduced”) into more concrete and practical norms preliminary to developing an intervention was a central task of this core group (van Melle et al. 2019).

Between these three two-day meetings, so-called platform meetings were organized. In these meetings, the findings of the meetings of the core group were presented to and discussed with over 100 participants from various backgrounds (health care professionals, patients, family members and researchers). Again, the focus was on sharing experiences and expertise and learning from each other. Finally, the multidisciplinary group which coordinated the project wrote a handbook including interventions to prevent coercion, experiences of patients, building standards for a HIC ward, and research results. The manuscript was presented to the field one more time during a final platform meeting for a last round of feedback.

This participatory and iterative process resulted in a multidisciplinary and comprehensive intervention, i.e. HIC-model. Because of this process, it had a large support base. People felt ownership and responsibility to implement HIC in practice. The participants became the ambassadors for HIC and played an important role in the implementation of HIC in the Netherlands. Nowadays, a large majority of mental healthcare institutions in the Netherlands has implemented HIC. Further research is being done on the implementation and effects of HIC.

As our example goes to show, we do not see implementation as the endeavor of the ethicist together with experts, which takes place after stakeholders from practice have participated in the empirical part of the study, or before stakeholders are asked to respond to what has been already developed or deliberated upon. Rather, we envisage a participatory implementation process, acknowledging that research co‐produced with stakeholders from practice is more likely to have impact on healthcare practice (Abma et al. 2017). Thus, whereas we welcome the plea of Sisk et al. to take implementation science seriously, we argue that implementation in bioethics should not be expert-oriented, but should be organized in cooperation with stakeholders in practice in a participatory and dialogical way.