Standardized pathways for cancer was initiated in Norway in 2017. The aim of cancer pathways is to ensure standardized waiting times, but also patient participation and shared decision making. Standardization and individualization are opposites which could lead to conflicting interests within cancer pathways. This study investigates how patients who have been in a standardized pathway for cancer diagnostics experienced opportunities for shared decision making.
2. Theory and Methods
Shared decision making is about patients’ opportunities to influence decision making about care and treatment. This study comprises 19 individual semi-structured interviews with patients who have been through a standardized pathway for cancer. Twelve had breast cancer, four had prostate cancer, and three had melanoma.
The participants were satisfied with having been in a standardized pathway for cancer. Experiences with shared decision making varied between diagnostic groups. Men with prostate cancer reported to have been involved in shared decision-making during diagnostics and treatment. They had been involved in discussions on when to act on suspicion of cancer, whether to have treatment, and which treatment they should choose. They described themselves as decision makers who had participated in shared decision making with medical specialists.
Women with breast cancer experienced that their treatment pathway had standardized treatment procedures according to their diagnosis. Treatment guidelines for their specific type of breast cancer led them to trust professional knowledge as the basis for decision making. Patients with malign melanoma had not experienced shared decision making. Being in a standardized pathway was described as safe and predictable by participants with breast cancer and melanoma.
Different cancer pathways provide different opportunities for shared decision making. The degree to which they can participate in decision making throughout the cancer pathways is conditioned by many aspects, such as medical prognosis, institutional practices and procedures. Gendered identities could influence how patients perceive the importance of shared decision making. However, patients may also have different priorities about what kind of communication they value and report as significant.
Patients in standardized pathways for cancer have varied experiences of shared decision making based on the possibilities that are been presented for them within each specific pathway. Standardization may lead to trust in professionals’ decision making, thereby reinforcing traditional forms of decision-making in hospitals.
6. Lessons learned
To increase shared decision making, patients need to be asked if and how they wish to participate in decision making. Health professionals need to provide enough information about options.
The study was limited to patients with only three cancer diagnoses. Interviews were done retrospectively, but within a short time-span after treatment initiation.
8. Suggestions for future research
More research is needed on how health personnel understand patient participation in standardized health services. A standardized pathway for cancer care after hospital discharge will shortly be implemented in Norway. This will include integration of services from primary and specialist health care. Future research should address shared decision making in integrated cancer care.