Who decides? A qualitative study on the decisional roles of patients, their caregivers and doctors on the method of bladder drainage after spinal cord injury

STUDY DESIGN: Qualitative study using individual in-depth interviews.

OBJECTIVE: To explore the roles of patients, their caregivers and doctors when making decisions on the method of bladder drainage after spinal cord injury (SCI).

SETTING: Five public hospitals in Malaysia.

METHODS: Semistructured (one-to-one) interviews with 17 male patients with SCI, 4 caregivers and 10 rehabilitation professionals.

RESULTS: Eight themes describing the respective decisional roles of patients, their caregivers and doctors emerged from the analysis: patient's right and responsibilities, patient as an informed decision maker, forced to accept decision; surrogate decision maker, silent partner; doctor knows best, over-ride patient's decision, or reluctant decision maker. Both patients and doctors acknowledged the importance of patient autonomy but not all patients had the chance to practice it. Some felt that they were forced to accept the doctor's decision and even alleged that the doctor refused to accept their decision. Doctors considered the caregiver as the decision maker in cases that involved minors, elderly and those with tetraplegia. Some patients considered bladder problems an embarrassing subject to discuss with their caregivers and did not want their involvement. Doctors were described as knowledgeable and were trusted by patients and their caregivers to make the most appropriate option. Some doctors were happy to assume this role whereas some others saw themselves only as information providers.

CONCLUSIONS: A paternalistic model is prevalent in this decision-making process and there is a discrepancy between patients' preferred and actual decisional roles.