Department of Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands.
The National Organization of Volunteers in Palliative Terminal Care in The Netherlands (VPTZ), Amersfoort, The Netherlands.
J Med Ethics. 2017 Sep;43(9):637-644. doi: 10.1136/medethics-2016-103791. Epub 2017 Mar 29.
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.
共同决策（SDM）的目的是向患者提供信息，以便他们能够在不受他人干扰、强迫或胁迫的情况下，与医生一起自主自由地决定治疗方案。然而，对癌症患者共同决策的生活体验进行的定性实证研究，使患者在面对绝症和需要决定治疗方案时的自主权问题复杂化。面对这一困难，本研究试图通过关注他人对患者的依赖，并借鉴对自主性片面观点的关怀伦理批判以及 Ricoeur 的基本主体间性和关系性自我观点，使患者的自主性更具关系性。我们的目的是将亲属不是视为医生和患者之外的第三方，而是将其视为患者身份的共同构成者，并从一开始就将其纳入决策过程。更重要的是，伴侣和家人可能会在根据过去、现在和可能的未来恢复患者身份方面提供无法估量的帮助。
