Advance care planning discussions – Perspectives from oncology patients with advanced-stage disease

Evidence in the literature confirms that advance care planning (ACP) discussions, assumed to benefit patients, their caregivers, and clinicians, occur at various rates, lower than intended and not as early as thought to be beneficial. The literature, however, provides limited reasons why this trend continues. When ACP discussions do occur, particularly between clinicians and patients with advanced-stage cancer, we have even less understanding of the ACP experience. Thus, the goal of our study was to characterize patient beliefs and experiences pertaining to ACP discussions, and to explore factors that may be associated with patient experiences. One hundred adults with advanced cancer participated in this cross-sectional survey study. The majority (63%) had heard about ACP, and 81% believed that health care providers should have ACP discussions with their patients. However, only 23% of participants in this sample had an ACP discussion. Among those who reported having an ACP discussion, 74% indicated that they spoke with family members about ACP, and 48% reported having spoken with their oncologist about ACP. Among those who had not had an ACP discussion with a health care provider, commonly reported reasons for not doing so included the respondent's desire to speak with family members first and the perception that one was not sick enough to need such a discussion yet. These findings can be used to inform the development of future interventions to improve provider communication about ACP and enhance patient experiences around ACP discussions.