Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Canada.
Int J Cardiol. 2012 Mar 22;155(3):383-7. doi: 10.1016/j.ijcard.2010.10.050. Epub 2010 Nov 20.
We investigated preferences of adults with congenital heart disease (CHD) and their health care providers regarding end-of-life (EOL) communication.
Adult CHD outpatients and health care providers completed surveys about preferences for and experiences with EOL communication. Responses were compared between patients and providers.
Two hundred patients (18-79 years) and 48 CHD health care providers (primarily cardiologists) completed surveys. Only 2 patients (1%) indicated that they had discussed EOL planning with their medical team. In contrast, 50% of providers reported that they typically discuss issues including life expectancy, advance planning, and resuscitation preferences with their outpatients. Seventy-eight percent (156/199) of patients wanted their medical team to raise EOL issues; this preference was independent of disease complexity and socio-demographic factors. In contrast, providers reported that their EOL discussions increase in accordance with disease complexity (p<0.001). Early initiation of EOL discussions, before diagnosis with life-threatening complications, was favored by 62% of patients but only 38% of providers (p<0.001).
Health professionals caring for adults with CHD should explore preferences of their patients for EOL discussions earlier in the disease course, and not only with patients facing life-threatening complications and/or with complex conditions. When EOL discussions do occur, health care providers should attempt to ensure that patients better understand these conversations. Increased attention to EOL issues is proposed in order to improve the care of patients with CHD across the lifespan.
我们研究了成人先天性心脏病（CHD）患者及其医疗保健提供者对临终（EOL）沟通的偏好。
成年 CHD 门诊患者和医疗保健提供者完成了有关 EOL 沟通偏好和经验的调查。对患者和提供者的反应进行了比较。
200 名患者（18-79 岁）和 48 名 CHD 医疗保健提供者（主要是心脏病专家）完成了调查。只有 2 名患者（1%）表示他们曾与医疗团队讨论过 EOL 计划。相比之下，50%的提供者报告说，他们通常会与门诊患者讨论包括预期寿命、提前计划和复苏偏好在内的问题。78%（156/199）的患者希望他们的医疗团队提出 EOL 问题；这种偏好与疾病复杂性和社会人口因素无关。相比之下，提供者报告说，他们的 EOL 讨论随着疾病的复杂性而增加（p<0.001）。62%的患者赞成在危及生命的并发症诊断之前尽早开始 EOL 讨论，但只有 38%的提供者赞成（p<0.001）。
照顾患有 CHD 的成年人的卫生专业人员应在疾病早期更早地探讨患者对 EOL 讨论的偏好，而不仅仅是在面临危及生命的并发症和/或病情复杂的患者中进行。当确实进行 EOL 讨论时，医疗保健提供者应尝试确保患者更好地理解这些对话。建议更多关注 EOL 问题，以改善患者在整个生命周期中的 CHD 护理。
