Feasibility of Educating Stem Cell Transplant Patients on Advance Care Planning: A Pilot Study

Introduction

Patients with hematologic malignancies undergoing hematopoietic cell transplants (HCT) experience a high symptom burden, suffer from diminished quality of life, and often receive aggressive care at the end of life. Low completion rates of advance directives (ADs) regarding preferences for end-of-life care in this population are also common. Our study aims to examine the feasibility of a timely educational intervention about an online AD (i.e., OurCareWishes.org; OCW) for patients with hematologic malignancies undergoing autologous or allogeneic stem cell transplantation. We also seek to ascertain whether this educational intervention impacts patients' decisional conflict regarding transplant and quality of life.

Methods

Patients scheduled for HCT were recruited and randomized to receive either in-person guided education about OCW (i.e., intervention) or standard AD information (i.e., usual care) 3-4 weeks prior to hospital admission for transplantation. Patients receiving the educational intervention were offered the opportunity to specify their preferences for life-sustaining or comfort-oriented care using vignettes and ultimately complete two components of online AD (e.g., health care proxy and living will). All patients received in-person follow-ups during their transplant and 2 months post-transplant appointments, during which patients who had received the educational intervention were re-approached about completing the online AD. Patients indicating a previously completed AD were offered the opportunity to review. At all three time points, patients were surveyed on their (1) decisional conflict regarding transplant using Decision Conflict Scale (DCS, 16-item, Range 0-60) and their (2) overall quality of life using McGill Quality of Life (MQoL) scale (16-item, Range 1-7). Greater DCS and MQoL scores represent greater decision conflict and better quality of life, respectively. We conducted a one-way repeated measures ANOVA to examine the effect of the educational AD intervention on decisional outcomes and quality of life.

Results

A total of 96 patients (98% Recruitment Rate) consented to participate and were randomized to receive either OCW (n=47) or standard AD information (n=49). They underwent either autologous (n=29), allogeneic reduced intensity (n=29), or allogeneic myeloablative (n=38) HCT. Most patients were male (n=57; 61%) and White (n=85; 89%). The median age was 59 (IQR=49.5-65.5) years (Table 1). There were no differences between intervention and usual care groups in their rating for overall quality of life and decisional conflict at all three timepoints (all p>0.05). 48% of patients (n=49) self-reported to have completed an AD prior this study, but only 43% (n=21) had a current AD uploaded to the EHR. Moreover, less than 6% of patients who received the OCW intervention fully completed the online AD.

Conclusions

This pilot study demonstrated the feasibility of administering a brief educational intervention on advance care planning (ACP) in patients with hematologic malignancies preparing for HCT. Participants in this study were generally receptive to discussions about advance care planning, even when presented by non-clinical staff. Education about advance directives does not appear to negatively affect decisional outcomes or quality of life. Nonetheless, further research should focus on how to increase AD completion rates, possibly through multidisciplinary team engagement in serious illness conversations and coordinated physician/patient incentives. Future studies should examine the impact of education of AD on aggressiveness of care and end-of-life outcomes in patients undergoing HCT.

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