• Melissa K Cousino, Victoria A Miller, Cynthia Smith, Karen Uzark, Ray Lowery, Nichole Rottach, Elizabeth D Blume, and Kurt R Schumacher.
• Department of Pediatrics, Michigan Medicine, University of Michigan, Ann Arbor, MI, USA.
• Palliat Med. 2020 Mar 1; 34 (3): 272-280.

BackgroundAdolescents 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.DesignThis cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018.Setting/ParticipantsTwelve 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.ResultsConsistent 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.ConclusionsAlthough 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.

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