Background: The advent of personalised medicine raises important ethical and economic questions. Australian oncologists commonly may not discuss unfunded expensive anticancer drugs (EACDs), because of concern about causing distress. We aimed to evaluate the views of patients with advanced cancer about this issue.

Methods: Eligible patients at two public hospitals completed a questionnaire regarding their views on 4 hypothetical scenarios involving an EACD. The scenarios described EACDs associated with: improved overall survival of 4–6 months (OS); encouraging response rate (RR) in a treatment-refractory situation; improved treatment tolerability/quality of life (QOL); or an improvement in progression-free survival of 4 months (PFS).

Results: 176 patients participated (response rate: 94%). 156 patients (89%) wanted their oncologist to discuss relevant EACDs, with 23 (13%) having previously discussed an EACD. Most wanted their oncologist to tell them about the 4 EACDs: improved OS = 72%, encouraging RR = 91%, better QOL = 86%, improved PFS = 90%; and receive the treatments (55–71%). Those not wanting discussion were mostly concerned about either themselves (47%) or their family (40%) becoming distressed. Desire to be told about the EACD or receive treatment did not vary significantly by disease-type or demographic factors and most thought the government should pay for the EACD (81–86%). Compared to results from our general public survey, eligible patients were less likely to want to pay for an EACD (29–40% vs 51–76%) particularly if they were female or single. Most participants would change their mind about paying if they could easily afford it, treatment was curative, or PFS could be extended by >24 months.

Conclusion: Most patients with advanced cancer want to be told about EACD treatment options by their oncologists, even if they are unwilling or unable to pay for them. Oncologists need to be realistic when discussing potential benefits of EACDs and remain sensitive to the distress it may cause.