Advance care planning (ACP) among hematopoietic cell transplant (HCT) patients and bereaved caregivers.

Abstract

9139 Background: HCT remains a high risk, potentially curative treatment typically offered to young, otherwise healthy patients with hematologic malignancies. Given this, patients and caregivers may not have considered end-of-life ACP. This study investigated the effect of pre-transplant ACP in surviving patients or bereaved caregivers. Methods: A retrospective, mixed-methods, audio-taped telephone survey adapted from validated instruments was conducted by a trained interviewer with English-speaking HCT survivors (n=18) and bereaved caregivers (n=11), 6-12 months post-HCT. Subjects were identified via HCT databases at two high-volume, tertiary centers between 2001-2003. Analysis included percentages from quantitative sections and qualitative transcripts coding by 2 investigators, with differences resolved by consensus. Results: HCT survivors [median age 47 years (range 33-67); 50% college-educated; all white] were interviewed a median of 13 months after HCT for acute leukemia (7), lymphoma (5), or other (6). Twelve (67%) had discussed mortality risk pre-HCT with the medical team; of these, 83% felt hope was increased or unchanged (I/U) and 100% felt clinician commitment to transplant was I/U by the conversation. Regardless of whether mortality was discussed, 50% had living wills and >75% had a formal proxy, yet 67% didn’t discuss mortality with family members pre-HCT. “Ignorance is bliss” was expressed by 6 survivors while 2 survivors regretted not discussing mortality risk. Bereaved caregivers [73% spouses; all W] were interviewed a median of 10 months after their loved one’s death, which occurred a median of 31 days (range 13-152) post-HCT. 100% were the patient’s proxy. Nine (82%) had discussed mortality risk pre-HCT with the medical team; of these, 78% felt hope was I/U, 100% felt clinician commitment to transplant was I/U, and 78% discussed EOL preferences with the patient pre-HCT, with 67% feeling ACP reduced burden. Four expressed appreciation for “the straight story.” Conclusions: Discussions of potential mortality with patients and caregivers before HCT did not affect hope, and supported confidence in medical teams.