Qualitative Study Of Patients' And Family Caregivers' (Fc) Perceptions And Information Preferences About Hospice.

50 Background: Despite the benefits of hospice for patients with advanced cancer and their FC, many patients are referred late or not at all. To assess potential patient and FC barriers to enrollment, we assessed their perceptions, knowledge, and information preferences about hospice.We conducted qualitative interviews with 16 adult patients with metastatic cancer and a prognosis ≤ 12 months and 8 of their FC. We used a semi-structured interview guide to elicit their perceptions (including perceived barriers to utilization), knowledge, and information preferences about hospice. Two raters coded interviews independently and reached acceptable inter-rater reliability (κ > 0.85). We used content analysis to identify themes.We found similar themes between patients and FC interviews. Participants had mixed views about which patients need hospice with some stating it is for patients only at the end-of-life and others perceiving it as important for patients who need care their family cannot provide. Notably, most patients perceived themselves as not needing hospice in the near future. While the majority perceived the role of hospice to enhance quality of life and provide comfort, some viewed it as providing practical support, including 24-hour care. 50% of participants had positive feelings about hospice, while others were more ambivalent. All participants felt they needed more information about hospice, yet they were mixed regarding the optimal timing of this information. Many thought it would be helpful to have information about hospice through pamphlets, websites, or videos, prior to a discussion with their oncologist. Most viewed denial and hope as the main barriers to early hospice enrollment.Study participants had misunderstandings about which patients were appropriate for hospice and regarding the services offered. Participants expressed strong desires for more information about hospice with educational tools, although were mixed about the optimal timing for reviewing these tools. These findings suggest that patients and FC would benefit from interventions to enhance their understanding of hospice and to facilitate a discussion with their oncologists.