Advance Care Planning With Adolescent and Young Adult Stem Cell Transplant Patients

Abstract

Background: Advance care planning is not routinely performed with adolescent and young adult hematopoietic stem cell transplant patients, despite their critically ill status and the possibility that immediate medical decisions will need to be made on their behalf. The lack of advance care planning discussions or documentation can lead to incongruence between adolescent and young adult patients and caregivers about end-of-life preferences, poor communication between patients and providers, and unwanted medical interventions. Early initiation of advance care planning has been shown to be safe and feasible for adolescent and young adult patients facing life-threatening illnesses.

Local Problem: In the Blood and Marrow Transplant Division at a large, urban freestanding pediatric hospital in the mid-Atlantic, it was determined that advance care planning was not routinely introduced to adolescent and young adult hematopoietic stem cell transplant patients during the transplant process. The purpose of this quality improvement project was to implement a standardized procedure for the initiation of advance care planning discussions and completion of advance care planning documentation for adolescent and young adult patients ages 15 years and older undergoing allogeneic hematopoietic stem cell transplant.

Interventions: A standardized process for advance care planning meetings with adolescent and young adult patients was created, detailing procedures for identifying eligible patients, scheduling meetings for advance care planning during the pre-transplant process, and standardizing the documentation of advance care planning discussions. Five blood and marrow transplant team members participated in a one-hour training session conducted by a palliative care physician to increase knowledge and comfort level with advance care planning and the selected advance care planning document, Voicing My CHOiCESTM.

Results: Four eligible adolescent and young adult patients were admitted for transplant between October and December 2018. All four patients completed Voicing My CHOiCESTM prior to hospital admission, and their completed documents were all easily located in the medical charts throughout their admissions. Documentation of the advance care planning discussion by the facilitating provider was present in the electronic health record for 100% of the patients. One hundred percent of the blood and marrow transplant team members rated the training session as “very helpful,” and rated Voicing My CHOiCESTM as helpful, easy to use, and appropriate for adolescent and young adult stem cell transplant patients.

Conclusions: Early introduction of advance care planning is feasible for adolescent and young adult hematopoietic stem cell transplant patients. A standardized process for advance care planning helped to increase the number of adolescent and young adult hematopoietic stem cell transplant patients who participated in advance care planning discussions and completed Voicing My CHOiCESTM. This approach has the potential to improve communication and increase congruence between patients, caregivers, and providers.