Cardiovascular Medicine Division, University of Pennsylvania, Philadelphia, PA 19104, USA.
Prog Cardiovasc Dis. 2012 Nov-Dec;55(3):266-273.e3. doi: 10.1016/j.pcad.2012.10.004.
The success of modern therapies in congenital heart disease has produced a large and growing population of adults with congenital heart disease as a chronic condition. Such success increasingly raises a host of ethical issues, from resource utilization to end of life decision-making. The importance of a multidisciplinary approach to the care of adult congenital heart disease (ACHD) patients has been emphasized for some time, but addressing the challenges in this population requires a broad range of ethical expertise as well. This paper is based on a conference entitled "Ethical and Policy Challenges in Pediatric and Adult Congenital Heart Disease" held in March of 2012. Herein, we present a compilation of the ethics priorities in ACHD discussed at the conference, including ethical aspects of clinical care, ethics research and policy development in the areas of providing clinical care for challenging ACHD patients, improving transitions from pediatric to adult healthcare systems, advance care planning, and addressing costs.
现代疗法在先天性心脏病方面的成功使越来越多的成年人成为慢性先天性心脏病患者。这种成功带来了一系列的伦理问题，从资源利用到临终决策。一段时间以来，人们一直强调对成人先天性心脏病（ACHD）患者进行多学科治疗的重要性，但要解决这一人群面临的挑战，还需要广泛的伦理专业知识。本文基于 2012 年 3 月举行的一次题为“儿科和成人先天性心脏病的伦理和政策挑战”的会议。在此，我们介绍了会议上讨论的 ACHD 伦理重点，包括临床护理的伦理方面、为具有挑战性的 ACHD 患者提供临床护理、改善从儿科到成人医疗保健系统的过渡、预先护理计划以及解决成本等方面的伦理研究和政策制定。
