PAPER How shared is shared decision-making? A care-ethical view on the role of partner and family Inge van Nistelrooij, 1 Merel Visse, 1 Ankana Spekkink, 2 Jasmijn de Lange 3 1 Department of Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands 2 The National Organization of Volunteers in Palliative Terminal Care in The Netherlands (VPTZ), Amersfoort, The Netherlands 3 Dutch Nurses Association (V&VN), Utrecht, The Netherlands Correspondence to Dr Inge van Nistelrooij, Chair Care Ethics, University of Humanistic Studies, Kromme Nieuwegracht 29, Utrecht 3512 HD, The Netherlands; i.vannistelrooij@uvh.nl Received 5 July 2016 Revised 26 January 2017 Accepted 3 March 2017 To cite: van Nistelrooij I, Visse M, Spekkink A, et al. J Med Ethics Published Online First: [ please include Day Month Year] doi:10.1136/medethics- 2016-103791 ABSTRACT The aim of shared decision-making (SDM) is to provide information to patients in order to enable them to decide autonomously and freely about treatment together with the doctor, without interference, force or coercion by others. Relatives may be considered as hindering or impeding a patient’s own decision. Qualitative-empirical research into lived experience of SDM of patients with cancer, however, problematises the patient’s autonomy when facing terminal illness and the need to make decisions regarding treatment. Confronted with this difficulty, this contribution tries to think through patients’ dependency of others, and make their autonomy more relational, drawing on care-ethical critics of a one-sided view of autonomy and on Ricoeur’s view of the fundamentally intersubjective, relational self. We aim to conceptualise relatives not as a third party next to the doctor and the patient, but as co-constituents of the patient’s identity and as such present in the decision-making process from the outset. What is more, partners and the family may be of inestimable help in retrieving the patient’s identity in line with the past, present and possible future. INTRODUCTION Although shared decision-making (SDM) is not yet a common practice in health or palliative care, empirical research shows that patient groups benefit from SDM. 12 Including the patient as a participant in the decision-making process is vital for good care, on legal grounds and from a care-ethical per- spective. 1 2 For patients are legally entitled to decide about their lives and bodies, but since care ethics views care as a relational practice, a decision about good care for a particular patient can only come about in a relational attuning process. SDM meets this relational view. However, even though including patients in these processes is advocated by care ethics, including them alone is not enough. For patients are no insular beings but embedded in relational networks. And these networks of part- ners and family prove to be vital in the process of coming to terms with illness, of digesting informa- tion, and of making decisions. This contribution aims to combine philosophical and empirical research in a ‘hybrid’ approach. According to Margaret Urban Walker’s 3 care- ethical epistemology, scrutinising practices and analysis of ‘what is going on in actual moral orders’ is indispensable in order to avoid moral philosophers to reflect on their own assumptions and experiences alone. Walker’s 3 approach combines an empirically saturated reflective ana- lysis with critical reflection. This paper also uses a ‘hybrid’ approach. It starts with empirical research that uncovers the vital role of partners and the family in practices of SDM. We present and analyse two examples of ter- minally ill patients having to decide about treat- ment. The examples were extracted from a qualitative-empirical study that consisted of two phenomenological case studies and was conducted from a care-ethical perspective, looking into the lived experience of SDM of patients with meta- static, incurable cancer and into what they consider good care. The examples (a) problematise a one- sided focus on the patient’s autonomy in the decision-making process and (b) show how empir- ical findings may lead to new questions regarding the idea of SDM in processes of illness and treat- ment. In the second part, therefore, we consider how a certain view of and connection between autonomy and justice dominates public and polit- ical debates on care, both in public policy and in institutional settings. Underlying these debates is a view of the self that is problematised from a care-ethical perspective. After that, the question is raised what theory may be useful in order to under- pin the relational self advocated by care ethics. We propose an answer by elaborating on two norma- tive care-ethical views of the relationals self, which are further supported by the radical relational view in the philosophical works of Paul Ricoeur. Hence, a rigorous conceptualisation of human relationality is proposed that may help us to think SDM anew, taking into account the ‘shared’ process of doctor and patient, and the shared life of patients, partners and family. This paper aims to serve an ethical as well as a meta-ethical goal, that is, to develop a relational- ethical view on SDM and to do so by unfolding a ‘hybrid’ kind of ethics that draws on theory and practices (C Leget et al, forthcoming). TWO EXAMPLES OF RELATIONALITY IN SDM This section presents two examples of patients with a severe illness and their experiences with decision- making. We present these examples in order to problematise theories of SDM that restrict the idea of SDM to the process between doctor and patient, thereby neglecting the patient’s relationality with others. This relationality, however, appears to be of the utmost importance to the patients themselves, even though the doctors press them to decide inde- pendently. The examples are part of an empirical phenomenological study on the experiences of van Nistelrooij I, et al. J Med Ethics 2017;0:1–8. doi:10.1136/medethics-2016-103791 1 Political philosophy & medical ethics JME Online First, published on March 29, 2017 as 10.1136/medethics-2016-103791 Copyright Article author (or their employer) 2017. Produced by BMJ Publishing Group Ltd under licence. group.bmj.com on March 30, 2017 - Published by http://jme.bmj.com/ Downloaded from