Method: The present study was part of a larger, randomized control trial comparing a standard paper/pencil form for ACP adapted for use on a computer with an interactive, educational, multi-media computer-based decision aid for ACP among 200 patients with advanced cancer. For the present data, participants were interviewed by phone every 6 weeks following completion of the ACP intervention. Questions included whether the patients had discussion about ACP with their healthcare provider and perceptions of how any such conversations changed the provider-patient relationship.
Result: Complete data sets were available for 178/200 participants. Of the 94/178 (53%) participants who reported having had a conversation with their healthcare provider, 78/94 (83%) reported no change in their relationship with their healthcare provider, 15/94 (16%) reported that the relationship was “somewhat” or “much” better, and only 1/94 (1%) reported that the relationship was “somewhat worse” as a result. Participants who completed ACP using the decision aid were not more likely to have had a conversation with their healthcare provider.
Conclusion: Having a conversation about ACP does not adversely impact the patient-provider relationship. However, in spite of the advantages of using an educational, interactive decision aid to engage patients in ACP (prior data having shown increases in knowledge and in satisfaction with end-of-life decisions, with no adverse change in hope or anxiety) the current results show that something more is needed to prompt patients to discuss their wishes with their healthcare providers. Our current NIH-funded study is examining the role of family caregivers in facilitating ACP discussions, including interactions with healthcare providers.