Medical expertise and patient involvement: a multiperspective qualitative observation study of the patient's role in oncological decision making

Abstract

Background: Decision making in oncology poses intricate ethical questions because treatment decisions should account not only for evidence-based standards but also for the patient's individual values and preferences. However, there is a scarcity of empirical knowledge about patient involvement in oncological decision making.

Methods: Direct, nonparticipant observation was used as a qualitative research method to gain an understanding of the interplay between medical expertise and patient participation in oncological decision making. Based on a multiperspective approach, observations were performed in three settings (tumor conference, ward round, and outpatient clinic) in the oncology department of a German university hospital. The observation transcripts were analyzed using central features of qualitative data analysis.

Results: Major differences were identified regarding the decision-making processes in the three settings related to the patient's presence or absence. When the patient was absent, his or her wishes were cited only irregularly; however, patients actively advanced their wishes when present. Preselection of treatments by physicians was observed, narrowing the scope of options that were finally discussed with the patient. Dealing with decisions about risky treatments was especially regarded as part of the physician's professional expertise.

Conclusion: The study reveals aspects of decision making for cancer patients that have been underexposed in the empirical and theoretical literature so far. Among these are the relevance of structural aspects for the decisions made and the practice of preselection of treatment options. It should be further discussed how far medical expertise reaches and whether therapeutic decisions can be made without consulting the patient.

Keywords: Decision making; Observation; Patient participation; Qualitative research.