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 normative background of empirical-ethical research: first steps towards a transparent and reasoned approach in the selection of an ethical theory

“…The interrelation between descriptive and normative aspects and theories applied is of central interest within the project. The ETHICO project has a model character and takes place in the oncology department of one German hospital [31]. It consists of six stages which range from the identification of ethical problems up to the development, implementation and evaluation of an intervention to support the clinical decision-making.…”

“…This finding could be related to concepts of patient autonomy from the medical-ethical literature. It also became obvious that the way in which patient autonomy is exercised in practice is very much dependent on structures of decision-making [31]. We, therefore, decided to select an ethical theory which did not conceptualize autonomy in a liberalistic way but stressed the importance of institutional structures which promote patient autonomy [39].…”

“…We used an observational research method which is based on Symbolic Interactionism [50] in the “exploration” stage to investigate the clinical practice with regard to the question, which ethical problems are relevant and how can they be further characterized [31]. We tried to understand and reconstruct the meanings which certain objects and actions had for the research participants.…”

What is an ethical problem and how do I find it? Theoretical, methodological and practical questions to identify ethical problems in an empirical–ethical intervention study

“…"Evaluation": Qualitative Evaluation der Intervention Die Identifikation und Charakterisierung ethischer Probleme im untersuchten Forschungsfeld einer onkologischen Abteilung erfolgt innerhalb des ETHICO-Projektes in der Forschungsphase 2 "Exploration". Mit der Zielsetzung eines offenen, kontextsensitiven Vorgehens wurde ein qualitativer Forschungsansatz gewählt, der aus einer Methodentriangulation von nichtteilnehmender Beobachtung, Interviews und Fokusgruppen besteht [39,43]. Unter Triangulation versteht man in der sozialwissenschaftlichen Forschung eine Herangehensweise, bei der verschiedene Perspektiven auf einen Forschungsgegenstand zueinander in Bezug gesetzt werden.…”

“…So ermöglicht die nichtteilnehmende Beobachtung etwa vor allem eine direkte Einsicht in alltägliche Abläufe und Routinen, während im Rahmen von Interviews auch nach seltenen und außerordentlichen Ereignissen gefragt werden kann. Die Beobachtungen fanden in drei unterschiedlichen "Settings" (Tumorkonferenz, Visite, onkologische Ambulanz) statt, und es wurden insgesamt 309 "Fälle" (d. h. Gespräche mit Patienten oder über Patienten) beobachtet [39]. Weiterhin wurden neun semistrukturierte Interviews mit vier Ärzten, drei Patienten und zwei Pflegenden geführt.…”