When curative treatment is not possible- a qualitative interview study on how patients with incurable upper GI cancer experience best supportive care

Abstract Introduction Patients with untreatable upper gastrointestinal cancers at Sahlgrenska University Hospital are today offered best supportive care (BSC). BSC is a form of palliative care focusing on nonlife extending treatments and symptom management. As of now the responsibility is on the patient to report escalating existing and new symptoms instead of a more systematic palliative care. More knowledge is needed about how these patients experience BSC in order to further develop the care for this group of patients. Method A qualitative interview study with semi-structured interviews. Five men and three women between the ages of 71-89 with experiences concerning BSC were interviewed. The data were analyzed using qualitative content analysis according to Graneheim and Lundman (2004). Result The result formed two categories: Shortcomings with BSC and Positive aspects with BSC. The underlying subcategories Insufficient information and communication, Ambiguity in the division of responsibilities between the organization, patients, and relatives and Insufficient support with symptom management described the hindrances’ participants experienced to conduct BSC. The subcategories Active involvement for patients and their relatives, Good Approach and accessibility and A sense of security described the prerequisites experienced by the participants to conduct BSC. Discussion According to the participants, BSC had some shortcomings. Some of these shortcomings being that the information was partially inadequate and that several participants experienced insufficient symptom management. The information therefore needs to be adapted for each patient and, for example, given through recurring conversations with patients and relatives. That could promote patient participation which is an important aspect of person-centered palliative care.