Schildmann, J.; Grünke, Mathias; Kalden, J.A.; Vollmann, J.
Information and participation in decision-making about treatment: a qualitative study of the perceptions and preferences of patients with rheumatoid arthritis.
In: Journal of Medical Ethics, Vol. 34: pp. 775-779
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 decisionmaking.
Design: In-depth interviews with themes identified using
principles of grounded theory.
Participants: 22 patients with long-standing rheumatoid
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.