„Alles dreht sich um. Dein ganzes Leben.“ Über das Gelingen von Aufklärungsgesprächen in der Onkologie – eine qualitative Untersuchung von Patientenperspektiven

Background Research about cancer and its treatment options are a main focus of medical research in general. In recent years questions about quality of life of and communication with patients have gained considerable attention in the scientific community. In Germany, patients are ethically and legally entitled to be informed about their diagnosis, the possible course of their disease and potential therapeutic options. Nevertheless, there is no binding regulation on how to structure conversation in which information about these topics is given to patients. Existing guidelines and provisions such as the SPIKES-protocol help to deliver messages considered as “bad news”, but have largely been developed without the involvement of patients. Quantitative research in the field is often limited to evaluating given patient preferences. Many findings support the hypothesis that there are significant differences between patient wishes and preferences and their realization in breaking bad news conversations. Research Question and methods This study is dedicated explicitly to the perspective of oncologic patients on conversations, which convey a diagnosis of cancer. In this study, influencing factors and goals of the “accomplished” conversation, in which the patient’s wishes and needs were realized, are explored with a qualitative research methodology. Questions about “satisfaction” with breaking bad news conversations have been avoided because of the positive and thus unfitting connotation. Twelve semi-structured in-depth interviews have been conducted with oncologic patients. These were transcribed and analyzed in a three-step process following the “qualitative content analysis” framework suggested by P. Mayring. A model was created from the data in a fourth interpretative step. Results The model, which presents the interviewed patients’ perspectives on “accomplished” breaking bad news conversations is structured in three dimensions: characteristics, influencing factors and needs. The data shows that these conversations are accomplished in the context of a sensitive fulfillment of the individual’s informational (understanding) and emotional (feeling) needs. Informational needs are: to gain a deeper understanding of the facts, what the disease, its prognosis and possible therapies mean for the current life situation. Emotional needs are: the necessity to regain assurance in one’s life, a feeling of 139 support on a journey through the disease and its therapy and the wish for a hopeful, but honest communication. Individuality, process, facts and shock are characteristics that are difficult to influence by bearers of breaking bad news. These conversations should be seen as an individual process rather than a single consultation. Facts, such as a diagnosis of cancer, almost inevitably cause an individual strong negative emotions and profound shock. This shock has a negative impact on the following conversation and is to a certain extent independent of the way the bad news are broken to the patient. The model provides influencing factors, which can be impacted by bearers of bad news, such as: relationship, atmosphere and transfer of knowledge. A long-term, empathic relationship with the treating physician was seen as favorable. An appropriate atmosphere, expressed through a sufficient amount of time and an undisturbed room for the conversation, played a major role for the interviewed patients. Another important, influential factor is the manner in which complex information was conveyed. Patients also stressed the importance of call-back questions, avoidance of technical language and the provision of adequate sources of information to ensure a successful transfer of knowledge. Discussion Breaking bad news conversations are highly complex interactions that are influenced by many factors and are subject to ethical and legal regulations. Existing guidelines address medical professionals as the bearers of bad news and mostly focus on a single conversation. This study and the model developed help to gain insight into the perspective of patients on accomplishing breaking bad news conversations as a complex and individual process. These conversations can be successfully accomplished when emotional and informational needs are a focus of the communication effort. The model presented here can contribute to the way breaking bad news conversations are conducted and is working towards a more patient-centered communication.