Clinical ethics

Information and participation in decision-making about treatment: a qualitative study of the perceptions and preferences of patients with rheumatoid arthritis

¹ Institute for Medical Ethics and History of Medicine, Ruhr University Bochum, Bochum, Germany
² Department of Hematology, Oncology and Tumor Immunology, Robert-Roessle-Clinic at the HELIOS Klinikum Berlin, Charite Medical School, Berlin, Germany
³ Unit for Rheumatology/Clinical Trials, University of Munich, Munich, Germany
⁴ Department of Medicine III, Friedrich Alexander University Erlangen-Nuremberg, Erlangen, Germany

Correspondence to:
Dr med Jan Schildmann, Abteilung für Medizinische Ethik und Geschichte der Medizin, Ruhr-Universität Bochum, Malakowturm-Markstr 258a, D-44799 Bochum, Germany; jan.schildmann{at}rub.de

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.

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