Background: Being diagnosed with cancer is an existential challenge and involves difficult treatment decisions, including treatment in clinical trials. Therapy for advanced cancer is potentially life‐prolonging and only rarely cures advanced cancer, which often renders these patients in a special situation where dealing with end of life, hope and meaning, become an important part of life. Many existing reviews include both patients with advanced cancer and patients undergoing adjuvant cancer treatment, and there is a lack of reviews with consistent study designs and methods.Aim: To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision‐making process.Method: A qualitative systematic literature review was conducted based on methods for thematic synthesis by Thomas and Hardens.Results: Eleven full‐text articles were included in this study. Six descriptive themes appeared and were grouped under two analytical themes: Individualised decisions and Hope and existential matters, which, through discussion, developed into the synthesis of What matters in treatment‐related decisions close to the end of life? This review has shown that existential matters are important in the decision‐making and that addressing these might be of great importance in medical decision‐making, whether it concerns the existential matters of the patients, of their relatives or of the health care professionals.Conclusion: This review points to existential issues as important contributors in making decisions about treatment. It can be beneficial if health care professionals address the role of existential matters in patients’ decision‐making in terms of clinical trial participation and involve the relatives more directly to increase individualised decisions. Future research should include the health care professionals’ experiences when going in depth with decision‐making, with a focus on the existential matters and uncertainties of the health care professionals.

Background: The aim of the study was to confirm the validity and reliability of the Observation Scheme-12, a measurement tool for rating clinical communication skills. Methods: The study is a sub-study of an intervention study using audio recordings to assess the outcome of communication skills training. This paper describes the methods used to validate the assessment tool Observation Scheme-12 by operationalizing the crude 5-point scale into specific elements described in a codebook. Reliability was tested by calculating the intraclass correlation coefficients for interrater and intrarater reliability. Results: The validation of the Observation Scheme-12 produced a rating tool with 12 items. Each item has 0 to 5 described micro-skills. For each item, the codebook described the criteria for delivering a rating from 0 to 4 depending on how successful the different micro-skills (or number of used jargon words) was accomplished. Testing reliability for the overall score intraclass correlation coefficients was 0.74 for interrater reliability and 0.86 for intrarater reliability. An intraclass correlation coefficient greater than 0.5 was observed for 10 of 12 items. Conclusion: The development of a codebook as a supplement to the assessment tool Observation Scheme-12 enables an objective rating of audiotaped clinical communication with acceptable reliability. The Observation Scheme-12 can be used to assess communication skills based on the Calgary-Cambridge Guide.

This paper aims to demonstrate how the use of participatory action research (PAR) helped us identify ways to respond to communication challenges associated with shared decision-making (SDM) training. Patients, relatives, researchers, and health professionals were involved in a PAR process that included: (1) two theatre workshops, (2) a pilot study of an SDM training module involving questionnaires and evaluation meetings, and (3) three reflection workshops. The PAR process revealed that health professionals often struggled with addressing existential issues such as concerns about life, relationships, meaning, and ability to lead responsive dialogue. Following the PAR process, a communication programme that included communication on existential issues and coaching was drafted. By involving multiple stakeholders in a comprehensive PAR process, valuable communication skills addressing a broader understanding of SDM were identified. A communication programme aimed to enhance skills in a mindful and responsive clinical dialogue on the expectations, values, and hopes of patients and their relatives was drafted. Before integrating new communication concepts such as SDM in communication training, research methods such as PAR can be used to improve understanding and identify the needs and priorities of both patients and health professionals.