Hupcey Judith E, Penrod Janice, Fogg Janet
Penn State University, Hershey, Pennsylvania 17033, USA.
J Palliat Med. 2009 Jun;12(6):531-6. doi: 10.1089/jpm.2009.0010.
The number of people with heart failure is continually rising. Despite continued medical advances that may prolong life, there is no cure. While typical heart failure trajectories include the risk of sudden death, heart failure is typically characterized by periods of stability interrupted by acute exacerbations. The unpredictable nature of this disease and the inability to predict its terminal phase has resulted in few services beyond medical management being offered. Yet, this population has documented unmet needs that extend beyond routine medical care. Palliative care has been proposed as a strategy to meet these needs, however, these services are rarely offered. Although palliative care should be implemented early in the disease process, in practice it is tied to end-of-life care. The purpose of this study was to uncover whether the conceptualization of palliative care for heart failure as end-of-life care may inhibit the provision of these services. The meaning of palliative care in heart failure was explored from three perspectives: scientific literature, health care providers, and spousal caregivers of patients with heart failure. There is confusion in the literature and by the health care community about the meaning of the term palliative care and what the provision of these services entails. Palliative care was equated to end-of-life care, and as a result, health care providers may be reluctant to discuss palliative care with heart failure patients early in the disease trajectory. Most family caregivers have not heard of the term and all would be receptive to an offer of palliative care at some point during the disease trajectory.
心力衰竭患者的数量在持续上升。尽管医学不断进步,可能延长患者生命,但该病仍无法治愈。典型的心力衰竭病程存在猝死风险,其特征通常是在急性加重期之间穿插着病情稳定期。这种疾病的不可预测性以及无法预测其终末期,导致除了医疗管理之外几乎没有提供其他服务。然而,这一人群存在一些未得到满足的需求,这些需求超出了常规医疗护理的范畴。有人提出姑息治疗作为满足这些需求的一种策略,然而,此类服务却很少提供。尽管姑息治疗应在疾病进程早期实施,但在实际中它却与临终关怀联系在一起。本研究的目的是探究将心力衰竭姑息治疗概念化为临终关怀是否会抑制这些服务的提供。从科学文献、医疗服务提供者以及心力衰竭患者的配偶照顾者这三个角度探讨了心力衰竭姑息治疗的意义。在文献以及医疗界中,对于姑息治疗这一术语的含义以及提供这些服务意味着什么存在混淆。姑息治疗被等同于临终关怀,因此,医疗服务提供者可能不愿在疾病进程早期与心力衰竭患者讨论姑息治疗。大多数家庭照顾者没有听说过这个术语,并且所有人在疾病进程中的某个阶段都会接受姑息治疗服务。