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How shared is shared decision-making? A care-ethical view on the role of partner and family
  1. Inge van Nistelrooij1,
  2. Merel Visse1,
  3. Ankana Spekkink2,
  4. Jasmijn de Lange3
  1. 1Department of Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands
  2. 2The National Organization of Volunteers in Palliative Terminal Care in The Netherlands (VPTZ), Amersfoort, The Netherlands
  3. 3Dutch Nurses Association (V&VN), Utrecht, The Netherlands
  1. Correspondence to Dr Inge van Nistelrooij, Chair Care Ethics, University of Humanistic Studies, Kromme Nieuwegracht 29, Utrecht 3512 HD, The Netherlands; i.vannistelrooij{at}uvh.nl

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.

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Footnotes

  • Contributors All authors contributed substantially to the analysis and interpretation offered in this paper. The IvN drafted a first draft, drawing on her PhD research and the responses to two paper presentations. The IvN and MV coedited the manuscript. The AS and JdL conducted the qualitative-empirical research from which the two examples were taken as well as the interpretation of the role of partners/family; they were supervised by the MV. All authors approved of the submitted manuscript.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval The Ethics Committee of the hospital involved.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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