Aim: To explore advance care planning (ACP) awareness, experiences and preferences of people with cancer and support people of someone with cancer, in Australia.
Methods: Adult participants were recruited to a national, online cross-sectional survey. Descriptive analyses of survey responses were completed.
Results: A total of 705 people responded (440 people with cancer and 265 support people), demonstrating similar findings for both target populations. 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Most (93%) discussions occurred with family or friends, and only 3.7% occurred with a doctor. 33% had written down their preferences. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics least often discussed with patients included assistance to complete an advance care directive, end-of-life care and dying, and ACP. Participants reported wanting discussions about quality of life and values, pain management and life expectancy, demonstrating an important gap in information provision.
Conclusion: Despite increasing community awareness of ACP, understanding appears to remain low amongst cancer patients and support people. They generally rely on discussions with family and friends rather than with health professionals. ACP should be introduced early across multiple interactions with health professionals, involving both the cancer patient and their support person when relevant and discuss a broad range of ACP relevant topics.