Medical and end-of-life decision making in adolescents’ pre-heart transplant: A descriptive pilot study
| Autor: | Cynthia Smith, Nichole Rottach, Victoria A. Miller, Karen Uzark, Elizabeth D. Blume, Melissa K. Cousino, Ray Lowery, Kurt R. Schumacher |
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| Rok vydání: | 2019 |
| Předmět: |
Male
Advance care planning Gerontology Adolescent medicine.medical_treatment Decision Making Population Pilot Projects 030204 cardiovascular system & hematology Article End of life decision Advance Care Planning Young Adult 03 medical and health sciences 0302 clinical medicine medicine Humans 030212 general & internal medicine Young adult Child education Heart transplantation Terminal Care education.field_of_study business.industry General Medicine Cross-Sectional Studies Anesthesiology and Pain Medicine Heart Transplantation Female Patient Participation business |
| Zdroj: | Palliat Med |
| ISSN: | 1477-030X 0269-2163 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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