Palliative and End of Life Care Preferences in Adolescents and Young Adults with Heart Failure

Abstract

Purpose Nearly 14,000 children experience heart failure (HF) related hospitalizations annually in the US. Death occurs in 7% of these cases with costly and invasive interventions being common near the end of life (EOL). Yet, youth with HF are less likely to receive palliative care services compared to other pediatric illness groups, with little research focusing on EOL care needs. This study aimed to describe palliative and EOL care preferences in adolescents and young adults (AYAs) with HF. Methods AYAs (12-24 years) with HF or a significant post-heart transplant complication and a parent were enrolled at a single center. AYA/parent dyads completed the Lyon Family-Centered Advance Care Planning Survey. Standard descriptive statistics were reported. Results 46 patients and 44 parents participated. Patients were 63% male; 76% White. Dilated cardiomyopathy (28%), chemotherapy-related cardiomyopathy (24%), and single ventricle heart disease (17%) were the most common diagnoses. Of patients 18 or over, only 24% had completed a Durable Power of Attorney. The majority of patients (57%) had not discussed their EOL care wishes with anyone. Most AYAs (80%) and parents (93%) desired parental involvement in EOL decisions if critically ill. Fewer AYAs (50%) and parents (57%) desired physician involvement in EOL decisions. Preferred timing for EOL discussions varied with nearly 1/3 stating discussions should occur when there is no chance of cure or survival. A quarter (26%) of AYAs preferred to have EOL discussions before getting too sick. Both AYAs and parents commonly endorsed that conversations about EOL wishes should be initiated by the following people: parent, cardiologist, psychologist/therapist, sibling, family physician. While many patients (37%) reported no barriers to discussing EOL wishes, 39% endorsed discomfort with discussions, and 15% stated their doctor never brings it up. Among participants, 13% of AYAs and 41% of parents perceived patient s heart disease to result in shortened life. Overall, AYAs (72%) and parents (66%) did not find participation in this study to be stressful. Conclusion Most AYAs with HF in this study had clear preferences regarding discussions about their EOL wishes; however, the majority had not discussed their wishes with anyone. Interventions to meet the individualized EOL communication needs of young patients with HF are needed.