• Titia van Kleffens, Berna van Baarsen, and Evert van Leeuwen.
• VU University Medical Center, Department of Philosophy and Medical Ethics, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands. t.van_kleffens.metamedica@med.vu.nl
• Soc Sci Med. 2004 Jun 1;58(11):2325-36.

AbstractThe idea that patients should take up an autonomous position in the decision-making process is generally appreciated. However, what patient autonomy means in the case of patients who refuse a recommended oncological treatment has not been investigated. This study aims to clarify how the concept of patient autonomy can be applied to patients who refuse a recommended oncological treatment. Focus questions are: (1) what is meant by patient autonomy, i.e. how is this autonomy conceptualised and (2) which factors influence patient autonomy. A qualitative study design with in-depth interviews was performed. The study sample included 30 cancer patients and 16 physicians. All patients had refused a recommended oncological treatment. Patient autonomy was revealed to be a comprehensive concept with elaborations on 'making decisions' and 'defining life choices' as sub-concepts of patient autonomy. In contrast to what is generally believed, decisions of patients to refuse an oncological treatment do not so much rely on the medical information about disease and treatment options, but are rather inspired by patients' own experiences or those of close others. The medical information and the role of the physician do, however, influence patients' experiences of being free and/or of having a choice. The results show that the extent of pressure physicians will exert to persuade the patient to be treated as recommended depends on the medical distinction between a curative and a non-curative treatment goal. It seems that there exists a shift in respecting patient autonomy, which depends on factors like treatment goal. Discussing the respect shift may serve to clarify underlying thoughts and principles in the decision-making process for both physicians and patients.

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