Family centred decision making and non-disclosure of diagnosis in a South East Asian oncology practice

Aim: To audit the extent of non-disclosure of cancer diagnosis (NDD) in South-East Asian patients referred to a Western trained oncologist, and determine the factors associated with this pattern of decision-making.

Methods: Over a 12-month period, all new patients referred to a single radiation oncologist's practice were prospectively audited at time of the initial consultation. Data obtained included patient demographic features, tumour details, proposed treatment and decision-making process. A shared decision-making consultation was attempted but if there was a persistent request by family to avoid disclosure, then a family-centred model was adopted. Patient autonomy was maintained by formally asking desire to participate in decision-making process, and subsequent permission then sought to involve family members as surrogates. Treatment aim, predicted median survival and NDD was recorded at end of consultation. Endpoints of patient NDD and non-discussion of prognosis were audited over a 12-month period, and factors potentially associated with these endpoints were assessed.

Results: Over a 12-month period 369 new patients were referred to the oncologist's practice. Forty per cent were >65 years, 84% Chinese race, and 66% non-English speaking. Lung (33%) and breast (32%) primaries were prominent. Forty-seven per cent were managed with palliative intent and 24% had expected median survivals of <6 months. NDD was recorded in 66 patients or 17% of the patient group. Quantitative discussion of prognosis was avoided in 36.8% of patients. On univariate analysis advanced patient age (p<0.001, OR=9.6, 95% CI 4.9-18.9), female sex (p=0.035, OR=1.8, 95% CI 1.04-3.1), non-English speaking (p<0.001, OR=21.4, 95% CI 5.1-89.1), palliative treatment aim (p<0.001, OR=5.9, 95% CI 3.1-11.2) and short expected median survival (p<0.001, OR=4.0, 95% CI 2.3-7.1) were associated with NDD. Advanced patient age (p<0.001, OR=7.9, 95% CI 3.6-17.5), female sex (p<0.001, OR=6.4, 95% CI 2.8-14.7), non-English speaking (p=0.010, OR=7.4, 95% CI 1.6-33.3) and palliative treatment aim (p=0.010, OR=3.3, 95% CI 1.3-8.0) remained significantly associated with NDD on multivariate logistic regression analysis.

Conclusions: A high rate of desired NDD is evident in this Asian oncology population when a family-centred model to medical decision making is used. This data confirms that NDD and the model of decision making remains a significant ethical issue.