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肺动脉高压患者的临终关怀与姑息治疗问题:障碍与机遇

End-of-Life and Palliative Care Issues for Patients Living with Pulmonary Arterial Hypertension: Barriers and Opportunities.

作者信息

Ali Hyeon-Ju, Sahay Sandeep

机构信息

Department of Cardiology, Houston Methodist Hospital, Houston, Texas.

Division of Pulmonary, Critical Care and Sleep Medicine, Houston Methodist Lung Center, Houston Methodist Hospital, Houston, Texas.

出版信息

Semin Respir Crit Care Med. 2023 Dec;44(6):866-876. doi: 10.1055/s-0043-1770124. Epub 2023 Jul 17.

DOI:10.1055/s-0043-1770124
PMID:37459883
Abstract

Pulmonary arterial hypertension (PAH) is a progressive, incurable disease that results in significant symptom burden, health care utilization, and eventually premature death. Despite the advancements made in treatment and management strategies, survival has remained poor. End-of-life care is a challenging issue in management of PAH, especially when patients are in younger age group. End-of-life care revolves around symptom palliation and reducing psychosocial disease burden for a dying patient and entails advanced care planning that are often challenging. Thus, support from palliative care specialist becomes extremely important in these patients. Early introduction to palliative care in patients with high symptom burden and psychosocial suffering is suggested. Despite of the benefits of an early intervention, palliative care remains underutilized in patients with PAH, and this significantly raises issues around end-of-life care in PAH. In this review, we will discuss the opportunities offered and the existing barriers in addressing high symptom burden and end-of-life care issues. We will focus on the current evidence, identify areas for future research, and provide a call-to-action for better guidance to PAH specialists in making timely, appropriate interventions that can help mitigate end-of-life care issues.

摘要

肺动脉高压(PAH)是一种进行性、无法治愈的疾病,会导致严重的症状负担、医疗资源利用增加,并最终导致过早死亡。尽管在治疗和管理策略方面取得了进展,但生存率仍然很低。临终关怀是PAH管理中的一个具有挑战性的问题,尤其是当患者属于较年轻年龄组时。临终关怀围绕着为濒死患者减轻症状和减轻心理社会疾病负担展开,需要进行往往具有挑战性的高级护理规划。因此,姑息治疗专家的支持在这些患者中变得极其重要。建议对症状负担重和有心理社会痛苦的患者尽早引入姑息治疗。尽管早期干预有诸多益处,但姑息治疗在PAH患者中仍未得到充分利用,这显著增加了PAH临终关怀方面的问题。在本综述中,我们将讨论在解决高症状负担和临终关怀问题方面所提供的机会以及现有的障碍。我们将关注当前的证据,确定未来研究的领域,并呼吁采取行动,以便为PAH专家提供更好的指导,使其能够及时、适当地进行干预,从而有助于缓解临终关怀问题。

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