title: Family involvement, independence, and patient autonomy in practice.
abstract: 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.
authors.affiliation: Department of Law, Queen Mary University of London.
authors.forename: Roy
authors.initials: R
authors.lastname: Gilbar
mesh_terms: D000328:Adult; D003657:Decision Making; D004739:England; D005195:Family Relations / Q000331:legislation & jurisprudence*; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000331:legislation & jurisprudence*; D007407:Interviews as Topic; D016743:Mental Competency / Q000331:legislation & jurisprudence*; D028701:Patient Rights / Q000941:ethics / Q000331:legislation & jurisprudence*; D026684:Personal Autonomy; D010817:Physician-Patient Relations / Q000941:ethics; D011368:Professional-Family Relations / Q000941:ethics; D036301:Qualitative Research; D012944:Social Support