"You Can Rest Knowing That We Know What You Want"-Longitudinal Advance Care Planning Discussions With Young Adults Receiving Hematopoietic Stem Cell Transplantation.

Abstract

Objective: Young adults (YAs) undergoing hematopoietic stem cell transplantation (HSCT) often face significant transplant-related morbidity and mortality. Advance care planning (ACP) discussions can provide YAs with the opportunity to address treatment goals and care preferences with their family members and healthcare team. However, such discussions often do not occur until YAs are critically ill or at the end of life. This pilot study aimed to examine the usefulness of a series of planned ACP discussions during transplantation and their impact on dyadic (patient-caregiver) relationships.

Methods: Qualitative, semi-structured interviews were conducted with YAs, aged 18-39 years, and caregivers following completion of three ACP conversations, one of which used the Voicing My CHOiCES communication guide. Data were analyzed using a reflexive thematic approach.

Results: Thirty-two interviews were conducted with 19 YAs and 13 caregivers of 21 YAs undergoing HSCT. Two main themes emerged: navigating uncertainty while facing potential mortality and reducing decisional regret. Having ACP conversations helped YAs communicate with their caregivers, often for the first time, about their preferences for care if they became seriously ill. This improved communication also often led to a sense of empowerment in knowing one another's preferences. Enhanced communication was reported to strengthen dyadic relationships.

Conclusion: Age-appropriate ACP conversations allowed YAs to express their preferences for care and provided an opportunity to address possible discrepancies with their caregivers. Such conversations can help to decrease stress, empower YAs and their caregivers, and potentially reduce decisional regret through a shared understanding of the YA's voice.