The aim of this study was to explore experiences of participation in treatment planning decisions from the perspective of patients recently treated for colorectal cancer. Ten patients were purposively selected and interviewed. Constant comparative analysis, the core concept of grounded theory, was used. The dimensions were developed and organized into the main theme of ‘compliant participation in serious decisions’, which was composed of the two variations: complying with participation; and complying without participation. Complying with participation was characterized by feelings of (...) self-confidence and self-competence and by open dialogue between the participants, significant others and the physician. Complying without participation was characterized by participants’ feelings of uncertainty and distress, and of being rushed into submitting to decisions without having time to reflect on the information provided or the opportunity to influence the treatment and care process. To participate (or choosing not to participate) builds on open and affirming dialogue, information and knowledge about the illness. Patient participation in treatment and care decision making is interpreted as a health promoting way of coping with illness. (shrink)

Objectives: To elicit the perceptions and preferences of patients with rheumatoid arthritis regarding information and participation in treatment decision-making. To analyse the patients’ narratives on the background of the ethical discourse on various approaches to treatment decision-making. Design: In-depth interviews with themes identified using principles of grounded theory. Participants: 22 patients with long-standing rheumatoid arthritis. Main outcome measures: Qualitative data on patients’ perceptions and preferences regarding information and participation in decision-making about treatment. Results: Decision-making about treatment has been described by (...) the patients as a process consisting of different stages with shifting loci of control and responsibility. Patients initially received one treatment recommendation and were not aware of alternative treatment options. Those participants in this study who wanted information about negative effects of a treatment cited “interest in one’s own health” and the potential “use of information” as reasons for their preference. The physicians’ expert knowledge and clinical experience regarding the effects of medication were cited as arguments by patients for a treatment recommendation. Conclusions: The patients’ accounts of decision-making about treatment differ from models of physician–patient relationship that have been put forward in ethical discourse. These differences may be relevant with respect to the starting point of an ethical analysis of treatment decision-making. Patients’ accounts with respect to a lack of information on treatment alternatives point to ethically relevant challenges regarding treatment decision-making in clinical practice. (shrink)

This essay explores the evolution of the tension between the principles of autonomy and beneficence in American health care over the past several decades. In retrospect it is clear that the social movements of the 1960s and 70s set the tone and the goals for the emergence of a new emphasis on patient autonomy. Indeed, the impact of civil liberties-minded lawyers on the promotion of a commitment to autonomy is far more vital than the term “bioethics” commonly suggests. Tracing the (...) impact of this principle on clinical encounters over the past 25 years makes apparent that consumers have extended their influence over a wide range of treatment decisions. This influence is now being reinforced by an extraordinary information revolution, which includes the computer, the web, the dot.coms, the search engines, and such novel practices as Direct-to-Consumer advertising by pharmaceutical companies. The impact of these developments may be seen in such diverse issues as physician-assisted suicide and the failure of national health insurance initiatives. (shrink)