Gilbar Roy
Department of Law, Queen Mary University of London.
Med Law Rev. 2011 Spring;19(2):192-234. doi: 10.1093/medlaw/fwr008. Epub 2011 May 4.
The legal debate about patient autonomy focuses mainly on mental capacity and provision of information. The influence of the family on the decisions of the competent adult patient has scarcely been discussed in English medical law. Dominated by the bioethical principle of individual autonomy, the law concentrates on the patient and takes an exclusionary stand regarding relatives. Hence, the aim of this article is to examine the attitude of English law towards the involvement of relatives when patients make decisions, and to investigate the views and experiences of patients and their relatives in reality. To fulfil this aim, a qualitative study was carried out in six NHS trusts in England. The study was based on in-depth interviews conducted with patients who suffer from long-term illnesses, and their relatives. In the interviews, patients stated that the relatives assisted them in making informed decisions about treatment. Patients said that relatives had an influence on the decision-making process and on the decision itself, but also reported that ultimately relatives left the final decision to the patient. The findings reflect a relational approach to patient autonomy. When making decisions about treatment, patients needed to know that their relatives would support them no matter what they decided. However, exceptional cases which demonstrated substantial familial influence suggest that the law should secure the patient's interest in making their own decisions. In light of these findings, it is argued that the current exclusionary attitude expressed in English medical law towards the role of relatives should be changed.
关于患者自主权的法律辩论主要集中在心智能力和信息提供方面。在英国医疗法律中，几乎没有讨论过家庭对有行为能力的成年患者决策的影响。受个人自主这一生物伦理原则的主导，法律关注的是患者，并对亲属持排斥态度。因此，本文旨在探讨英国法律在患者做决策时对亲属参与的态度，并调查患者及其亲属在现实中的观点和经历。为实现这一目标，在英国的六个国民保健服务信托机构开展了一项定性研究。该研究基于对患有长期疾病的患者及其亲属进行的深入访谈。在访谈中，患者表示亲属帮助他们做出关于治疗的明智决策。患者称亲属对决策过程和决策本身都有影响，但也表示最终亲属会将最终决定权留给患者。研究结果反映了一种关于患者自主权的关系性方法。在做治疗决策时，患者需要知道无论他们做出何种决定，亲属都会支持他们。然而，显示出显著家庭影响的特殊案例表明，法律应保障患者自主做决定的权益。鉴于这些研究结果，有人认为英国医疗法律目前对亲属角色所表现出的排斥态度应予改变。
