Adolescents and young adults (AYA) at the end of life: Using voicing my choices to enhance communication and guide planning

Abstract

PURPOSE: Over 11,000 adolescents and young adults (AYA), ages 15-34, die yearly from cancer and other life-threatening conditions. In order provide comprehensive end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis and continue throughout the illness trajectory. Advance care planning (ACP) documents provide patients an opportunity to express their preferences for care and can also help patients and families make informed decisions, alleviate distress, avoid decisional regret, and improve the patient’s quality of life. Few resources exist to aid AYAs in addressing their changing physical, emotional and social preferences around EoL. METHODS: This study is a 1-month pre-post design to determine whether AYA engaging in ACP feel using Voicing My CHOiCESTM (VMC) is helpful/stressful, is associated with reduced anxiety, and/or improves communication about preferences with family, friends, and/or health care providers. Participants are AYA aged 18-39 diagnosed with cancer or other life threatening illnesses at The National Cancer Institute, Children’s Hospital of Orange County, and Dana Farber. Study questionnaires include validated measures and qualitative research questions. Enrollment is ongoing, therefore preliminary data (univariate and bivariate analyses) related to EoL planning anxiety and experiences completing VMC will be presented. RESULTS: Twenty-two patients completed time 1, and 14 completed time 2. In terms of EoL planning, 57.1% of respondents indicated moderate/ a lot of anxiety at baseline, 31.3% reported moderate/ a lot immediately after completing VMC and 23.1% rated moderate/a lot at 1-month follow up. Approximately 75% of the sample felt VMC questions were appropriate, >95% found them helpful and 20-65% reported that the questions were not at all stressful (variation based on topic). At time 2, 71% (n =10) shared VMC preferences with a family member or friend, whereas only 1 participant (7%) indicated having had discussions with a health care provider. CONCLUSIONS: Engaging in ACP utilizing VMC has shown a decrease in anxiety over time surrounding EoL planning. Completing VMC has enhanced patient communication regarding EoL preferences with both family and friends, but has not shown an increase in communication with health care providers. Interventions/ Education is needed to enhance provider comfort with initiating these discussions. Research Implications: Given the increasing importance of end-of-life planning, and continued challenges in ensuring these conversations occur with the medical team, future research should include the perspective of the provider. Clinical Implications: Specific recommendations and discussion points are offered to assist in provider facilitation of sensitive EoL care discussions with patients and families.