Medical and end-of-life decision making in adolescents’ pre-heart transplant: A descriptive pilot study

Abstract

Background: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences. Aim: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making. Design: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018. Setting/participants: Twelve adolescent and young adult patients listed for heart transplant (ages = 12–19 years) and one parent for each were enrolled at a single-center, US children’s hospital. Results: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied. Conclusions: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.

Variability in clinical decision‐making for ventricular assist device implantation in pediatrics

“…In terms of involvement of mature minors, while a majority of respondents reported involving them in the entire consent process, still 23% reported that not all risks were reviewed with them. In a survey of adolescents listed for HT, Cousino et al found that most adolescents (83%) want to discuss their prognosis and be part of medical decisions, including end‐of‐life decision‐making 27 . Our survey highlights areas to improve consistency in preimplant discussions as well as adolescent involvement in shared decision‐making for VAD implantation.…”

ISHLT consensus statement for the selection and management of pediatric and congenital heart disease patients on ventricular assist devices Endorsed by the American Heart Association

“…251 Emerging literature suggests that many young people prefer to be involved in decision making about their end of life (EOL) care if seriously ill. 252 Among a pilot sample of adolescents with HF, 83%, indicated a preference to be involved in their EOL decision making. 253 In addition to cultural considerations, care teams regularly assess preferences regarding communication and decision making about EOL care. Care teams should establish time points for assessing and revisiting these preferences, such as pre-implant, emergence of VAD complication, and upon discharge.…”

“…[254][255][256] Adolescents with HF report a preference for these conversations to be initiated by a member of the healthcare team. 253 Following assessment of patient and family preferences, participation of all patients in advance care planning should be considered.…”

Paediatric palliative care research has come of age

“…Janvier et al 3 identify clinician communication behaviours that foster trust in parents of children with Trisomy 13 and 18. Cousino et al 4 report from a study of adolescents and young adults listed for heart transplant that while they actively participated in the decision to pursue transplant, they also wanted further discussion about their end-of-life options and preferences. In a study of adolescents and young adults undergoing bone marrow transplant, Needle et al 5 show that adolescents and young adults are capable of meaningful deliberation in making this and future treatment decisions.…”