Patients' experiences of an initial consultation in oncology: knowing and not knowing

The aim of this paper was to explore how patients experience an initial oncology consultation. This study was part of a larger mixed methods research project designed to address the issue of improving communication and enhancing patient satisfaction with oncology consultations.

Interpretive phenomenological analysis was used to interpret the participants' meanings of their experiences in their initial consultation. It is an idiographic approach that focuses in depth on a small set of cases in order to explore how individuals make sense of a similar experience. This retains the complexity and diversity of experiences.

In the larger study, semi-structured interviews were carried out with 36 patients as soon as possible after a consultation in oncology to explore their experiences. Five cases were selected for this study on the basis of homogeneity; they had all undergone some prior investigations of their illness, and this was their first consultation in oncology; they all provided rich accounts relating to how they had experienced the consultation.

Patients' experiences of being given their diagnosis differed both between participants and within the same participant. Various defences seemed to be used in order to protect them from fully engaging with the knowledge they were given. Their accounts of what they wished to know in the consultation could be affected by a desire to protect themselves and/or family members from distress and by the practical need to know that may vary over time.

The complexity of patients' needs and preferences regarding information means that the doctor's role in communicating that information in a patient-centred way is difficult. The findings are discussed in relation to open awareness theory as to how the emotional context of the consultation process affects information needs. Doctors need strategies to elicit information from patients about their needs from the consultation. This needs to be done at the start of consultations and throughout investigations and treatment, as needs may change over time. Statement of contribution What is already known on this subject? Patients' desire to know information is sometimes tempered with by a desire to avoid distress to themselves. Patients do not always understand or make accurate sense of what they have been told. Receiving a diagnosis of cancer is distressing for patients. What does this study add? Doctors need strategies to elicit information from patients about their needs for each consultation. This needs to be done consistently throughout the patient journey as needs may change over time. Patients control what they do or do not do with information but do not openly share this with the doctor. Our interpretations of the interviews stray beyond the conscious accounts of the consultations and draw on (unconscious) absences that may also be of significance in making sense of overall experience. The complexity of patients' needs and preferences regarding information means that the doctors' role is very difficult. Patients have a right to know but not a duty to know their diagnosis and prognosis.