Greutmann Matthias, Tobler Daniel, Colman Jack M, Greutmann-Yantiri Mehtap, Librach S Lawrence, Kovacs Adrienne H
Division of Cardiology, University Hospital of Zurich, Zurich, Switzerland.
Congenit Heart Dis. 2013 Jul-Aug;8(4):281-8. doi: 10.1111/chd.12025. Epub 2012 Dec 27.
Most adults with congenital heart disease (CHD) are interested in discussing matters related to advance care planning (ACP) early in the disease course, yet few such conversations actually occur. We aimed to evaluate factors that impact these discussions between patients and adult CHD providers.
Two hundred adult CHD outpatients completed a survey that included factors that might impact ACP discussions with their doctors. In parallel, forty-eight providers within the Canadian Adult Congenital Heart Network completed a similar online survey. Responses were compared between the groups.
Most providers (85%) worried that they were unable to reliably estimate life expectancy and believed that patients were not ready for end-of-life discussions if their estimated life expectancies were beyond 5 years (63%) or beyond 10 years (79%). In contrast, only 24% of patients, independent of disease complexity, thought they were not ready to talk about ACP. Most providers (83%) reported that greater certainty about patients' prognoses would help them discuss ACP. Patients thought that such discussions were best facilitated when they had trust in their doctors (85%) and believed their doctors are good at taking care of patients with CHD (78%).
Despite the fact that challenges to prognostication exist, discussions about ACP should not be reserved for patients with a severely reduced life expectancy. Most patients want these discussions regardless of the complexity of their disease. The trusting and close patient-doctor relationship in adult CHD, often evolving over many years, may provide an excellent platform from which to initiate such discussions.
大多数患有先天性心脏病（CHD）的成年人有兴趣在疾病进程早期讨论与预先护理计划（ACP）相关的事宜，但实际上很少进行此类对话。我们旨在评估影响患者与成人先天性心脏病医疗服务提供者之间这些讨论的因素。
200名成年先天性心脏病门诊患者完成了一项调查，其中包括可能影响与医生进行预先护理计划讨论的因素。同时，加拿大成人先天性心脏病网络中的48名医疗服务提供者完成了一项类似的在线调查。对两组的回答进行了比较。
大多数医疗服务提供者（85%）担心他们无法可靠地估计预期寿命，并认为如果患者的预期寿命超过5年（63%）或超过10年（79%），他们就没有准备好进行临终讨论。相比之下，只有24%的患者，无论疾病复杂性如何，认为自己没有准备好谈论预先护理计划。大多数医疗服务提供者（83%）报告说，对患者预后有更大的确定性将有助于他们讨论预先护理计划。患者认为，当他们信任自己的医生（85%）并认为医生善于照顾先天性心脏病患者（78%）时，此类讨论最容易进行。
尽管存在预后预测方面的挑战，但关于预先护理计划的讨论不应只留给预期寿命严重缩短的患者。大多数患者无论疾病复杂性如何都希望进行这些讨论。成人先天性心脏病中信任且密切的医患关系，通常经过多年发展而成，可能为发起此类讨论提供一个绝佳的平台。
