Prospective Randomized Study of Advance Directives in Allogeneic Hematopoietic Cell Transplant Recipients

Abstract

Background Advance directives (AD) offer the opportunity for goal-concordant care at the end of life (EOL). However, fewer than half of HCT recipients have a documented AD. We hypothesized that the use of a novel AD-the Stanford What Matters Most Letter (Letter AD)-developed to assess patients' values, goals, and EOL wishes would result in a greater proportion of AD completion among HCT recipients. We therefore conducted a prospective, randomized, controlled study of the traditional California AD vs. the Letter AD in adult allogeneic HCT recipients. Methods Patients >= 18 years old undergoing first allogeneic HCT at Stanford University were eligible. Prior to HCT conditioning, enrolled patients were randomly assigned to complete either the traditional California AD or the Letter AD, and all patients received a sociodemographic survey and a survey evaluating their opinions regarding the AD form they received. Patients were asked to return all research forms at the time of their transplant admission; a research assistant placed a reminder call to each patient prior to scheduled transplant. The primary endpoint was AD completion; secondary endpoints included EOL wishes as documented on the AD and patient preferences and opinions regarding the AD version they received. Results Between March 2017 and August 2018, 212 patients were eligible, of whom 126 (59.4%) were enrolled and randomized. Among the 84 who declined, the primary reason was already having an AD (N=34). The median age was 57 years (IQR 45-64); 54.8% were male; 58.7% were non-Hispanic White; and 72.3% had AML/MDS. There were no statistically significant differences in baseline socio-demographics between study arms. The overall AD completion rate was 71.6% and did not differ between the Traditional and Letter AD study arms (70.3% vs 72.6%, P=0.78). Preferences for EOL among responders are described in Table 1. The Letter AD uncovered that 66.7%, 42.2%, and 46.7% of patients actively wished to die gently/naturally, at home, and/or with hospice, respectively, whereas the traditional AD found that 62.2% wished to not prolong life if recovery was unlikely. Figure 1 portrays participant responses to the AD opinion survey; non-significant trends suggested that patients found the Letter AD favorable in terms of identifying what matters most to them, describing medical preferences to family, and stimulating thinking about the topic. Conclusion Completion rates of AD amongst allogeneic HCT recipients on this study were high and did not differ based upon AD version. Most patients wish to die naturally/do not wish to prolong care at EOL. Non-significant trends favored the Letter AD over the Traditional AD across several domains of patient preference.