The patient who 'must not be told': demographic factors associated with collusion in a retrospective study in South India

Abstract

Background: Patients with cancer need adequate information about diagnosis, treatment options, and possible outcomes and prognosis to make therapeutic decisions. In cultures where the family plays the dominant role in healthcare decisions, doctors are often requested to collude in withholding distressing information from the patient. This challenging situation has not been well studied and there is limited knowledge on the different factors that may contribute to collusion.

Objective: To study the prevalence of collusion among adult cancer patients attending a palliative care outpatient clinic and the contributing factors.

Methods: The healthcare records of 306 adult cancer patients who had visited the palliative care outpatient clinic at least three times with follow-up until death were retrospectively reviewed. Details on information shared and why it was not shared were retrieved from the documentation in the communication sheet in the patient chart. The prevalence, sociodemographic and clinical factors that could contribute to collusion in doctor-patient communication were studied.

Results: Collusion was present in 40% of cases at the time of referral to the palliative care outpatient clinic (collusion regarding diagnosis in 18%; collusion regarding prognosis in 40%). Collusion was later addressed in 35%. Collusion was significantly higher among female patients (p=0.005), manual workers (p=0.035), those not accompanied by a spouse (p=0.000) and with no oncological treatment (p=0.001).

Conclusions: Collusion regarding diagnosis or prognosis is common among cancer patients referred for palliative care. It was more prevalent among female patients, manual workers, patients who had not received oncological treatment, and patients not accompanied by a spouse.