Mazwi Mjaye L, Henner Natalia, Kirsch Roxanne
Pediatric and Cardiac Critical Care, Division of Cardiology, Ann and Robert Lurie Children's Hospital of Chicago, Northwestern Feinberg School of Medicine, Box 21, 225 E, Chicago Ave, Chicago, IL 60611.
Neonatology and Palliative Care, Ann and Robert Lurie Children׳s Hospital of Chicago, Northwestern Feinberg School of Medicine, Chicago, IL.
Semin Perinatol. 2017 Mar;41(2):128-132. doi: 10.1053/j.semperi.2016.11.006. Epub 2017 Feb 8.
Patients with critical congenital heart disease are exposed to significant lifetime morbidity and mortality. Prenatal diagnosis can provide opportunities for anticipatory co-management of patients between palliative subspecialists and the cardiac care team. The benefits of palliative care include support for longitudinal decision-making and avoidance of interventions not consistent with family goals. Effectively counseling families requires an up-to-date understanding of outcomes and knowledge of provider biases. Patient-proxy reported quality of life (QOL) is highly variable in this population and healthcare providers need to be aware of limitations in their own subjective assessment of QOL.
患有严重先天性心脏病的患者一生都面临着较高的发病风险和死亡风险。产前诊断可为姑息治疗专科医生和心脏护理团队对患者进行预期的联合管理提供机会。姑息治疗的益处包括支持长期决策以及避免采取不符合家庭目标的干预措施。有效地为家庭提供咨询需要对治疗结果有最新的了解,并知晓医疗服务提供者的偏见。在这一人群中,患者代理人报告的生活质量(QOL)差异很大,医疗服务提供者需要意识到他们自己对生活质量的主观评估存在局限性。