The Impact of Advance Directives on End-of-Life Care for Adolescents and Young Adults Undergoing Hematopoietic Stem Cell Transplant

Abstract

Background: Little is known about the role of advance directives (AD) in end-of-life (EOL) care for adolescents and young adults (AYA) undergoing hematopoietic stem cell transplant (HSCT). Objective: The study objective was to describe the frequency, type, and influence of AD on the use of lifesustaining treatment (LST) in AYA patients undergoing HSCT. Methods: We performed a retrospective chart review of 96 patients aged 14-26 undergoing HSCT between April 2011 and January 2015 at the University of Minnesota. LST was defined as the use of positive pressure ventilation (PPV), dialysis, or CPR. Results: Of the 96 patients, survival was 72.9%, and 23% had an AD. Of the 26 patients who died, 13 (50%) had an AD. Among the 19 patients who died in the ICU, there was no significant difference in PPV, dialysis, withholding or withdrawing of LST, or timing of do not resuscitate (DNR) orders between those with ADs preferring LST (n = 5), those naming proxies only (n = 4), and those without ADs (n = 10). Patients with ADs expressing preference for LST were significantly more likely to receive CPR than those with proxies or those without ADs ( p = 0.02). Conclusion: A minority of AYA patients undergoing HSCT had ADs. Patients received care that was strongly associated with their preferences. With the exception of CPR, the use of LST did not differ between those with ADs and those without.

Advance Directive Utilization Is Associated with Less Aggressive End-of-Life Care in Patients Undergoing Allogeneic Hematopoietic Cell Transplantation

“…Similar to other reports, our data demonstrate that uptake of ACP is particularly low in younger adults and patients of Hispanic ethnicity [22–25]. Although the median age of our population was 55 years, ACP completion was only 30% among the 79 patients under age 40 years.…”

Advanced Care Planning and End-of-life Outcomes in Hematopoietic Stem Cell Transplant Patients

“…While Ganti et al 20 and Needle and Smith 19 did not find any effect of ACP on high-intensity medical care at the EOL, the findings from Cappell et al 23 were statistically significant and included specific measurements regarding AD not to prolong life. The data from Needle and Smith 19 regarding the use of high-intensity medical care at the EOL could be skewed because of the population focus of AYA, with innately more preference for high-intensity medical care measures at the EOL leading to increased healthcare utilization.…”

“…Needle and Smith, 19 Eckhert et al, 21 Wang et al, 22 and Cappell et al 23 all found that a majority of HSCT patients died in a hospital setting, versus at home or on hospice, with Wang et al 22 specifically finding that only 15% of patients who died were enrolled in hospice and 85% died in the hospital. There was also significant evidence to show that patients with ACP were less likely to die in a hospital setting.…”

“…Overall, patients with PC consultation were more likely to die under hospice care, with most patients having a PC consultation in the hospital setting. The findings from Needle and Smith 19 indicates that, with ACP and AD in place, patients had care that followed their directed goals. This finding suggests that there is room for improvement in earlier PC consultation to facilitate patient care goals being followed, although Needle and Smith 19 did not find any effect of ACP on EOL high-intensity medical care.…”

“…Though difficult, the randomized controlled trial methodology would be the best way to answer how and when to approach ACP in the HSCT population. The study conducted by Needle and Smith 19 was an outlier as it included AYA as well as patients who did not die after HSCT. Needle and Smith 19 also had different measures, differentiating patients preferring vs not preferring LST in their AD, patients designating proxies only in the ADs, and those without ADs.…”