Antonione Raffaella, Sinagra Gianfranco, Moroni Matteo, Correale Michele, Redaelli Dario, Scrutinio Domenico, Malinverni Eugenia, Nodari Savina, Calabrò Raffaele, Penco Italo, Mercuro Giuseppe
S.O.C. Medicina, Ospedale San Polo, AAS 2 Bassa Friulana Isontina, Monfalcone (GO).
Dipartimento Cardiotoracovascolare, Azienda Sanitaria Universitaria Integrata, Università degli Studi, Trieste.
G Ital Cardiol (Rome). 2019 Jan;20(1):46-61. doi: 10.1714/3079.30720.
Palliative care is recognized as an approach that improves quality of life of patients and families facing life-threatening illnesses. This is achieved through prevention, early identification, assessment and treatment of symptoms and other psycho-social, spiritual and economic issues. Palliative care is not dependent on prognosis and can be delivered as "simultaneous care", together with disease-modifying treatments and adequate symptom relief. Palliative care relies on coordination across settings of care and offers open communication to patients and caregivers. Recently, there is increasing interest in the potential role of palliative care in refractory, advanced heart failure treated with optimal, maximized therapy.Heart failure is a chronic progressive syndrome characterized by periods of stability interrupted by acute exacerbations, usually leading to reduced functional status. It accounts for approximately one-third of deaths in industrialized countries and is a common cause of hospitalization. Fifty percent of patients with advanced heart failure die within 1 year of diagnosis and 50% of the remainder within 5 years. The trajectory of heart failure is often unpredictable and approximately 30% to 50% of patients die suddenly. Patients with heart failure suffer from numerous symptoms, often resistant to conventional treatments, frequently under-recognized and under-treated. Symptom assessment and control improve quality of life in patients with advanced heart failure; this can be managed at best by collaboration between specialistic teams.Although heart failure is a life-shortening condition, therapeutic and technological advances (such as left ventricular assist devices, coronary revascularization, percutaneous valve implantation, and implantable cardioverter defibrillators) can help healthcare professionals in the management of patients with advanced heart failure, improving global condition and reducing the risk of sudden death. On the other hand, it has to be acknowledged that management of cardiovascular implanted electronic devices towards end of life requires awareness of legal, ethical, religious principles regarding potential withdrawal of life-sustaining therapies.Adequate communication with patients regarding adverse events, end of life, benefits vs burdens of therapies and interventions, treatment preferences, and decision-making should be an issue in early stages of disease. The process of advanced care planning should be clearly documented and regularly reviewed.Barriers to the provision of palliative care in heart failure include clinical issues (disease trajectory), prognostic uncertainty, failure in identification of patients who need palliative care and timing of referral to specialist services, but also misconceptions of patients, families and sanitary staff regarding the role of palliative care, organization problems, and finally educational and time issues.This document focuses on the need of further, coordinated research and work-out on: (i) identification of heart failure patients eligible for palliative care, in terms of clinical and social-psychological issues, (ii) identification of trigger events and timing of referral; (iii) identification of adequate performance indicators/scales for measurement, assessment and follow-up of symptoms and quality of life in end-stage heart failure, including patient-reported outcome measures; (iv) treatment, care and organization strategies and models for advanced/end-stage heart failure ("care management"); and (v) implementation of knowledge and education of healthcare professionals in the fields of communication, ethics, and advanced care planning in heart failure.
姑息治疗被公认为是一种提高面临危及生命疾病的患者及其家庭生活质量的方法。这是通过预防、早期识别、评估和治疗症状以及其他心理社会、精神和经济问题来实现的。姑息治疗不依赖于预后,可以作为“同步治疗”与改善病情的治疗和充分的症状缓解同时进行。姑息治疗依赖于不同护理环境之间的协调,并为患者和护理人员提供开放的沟通渠道。最近,人们对姑息治疗在采用最佳、最大化治疗的难治性晚期心力衰竭中的潜在作用越来越感兴趣。
心力衰竭是一种慢性进行性综合征,其特征是病情稳定期被急性加重期打断,通常导致功能状态下降。在工业化国家,它约占死亡人数的三分之一,是住院的常见原因。50%的晚期心力衰竭患者在诊断后1年内死亡,其余患者中有50%在5年内死亡。心力衰竭的病程往往不可预测,约30%至50%的患者会突然死亡。心力衰竭患者有许多症状,往往对传统治疗有抵抗性,经常未得到充分认识和治疗。症状评估和控制可改善晚期心力衰竭患者的生活质量;这最好通过专科团队之间的协作来管理。
虽然心力衰竭是一种缩短寿命的疾病,但治疗和技术进步(如左心室辅助装置、冠状动脉血运重建、经皮瓣膜植入和植入式心脏复律除颤器)可以帮助医护人员管理晚期心力衰竭患者,改善整体状况并降低猝死风险。另一方面,必须承认,在生命末期对心血管植入式电子设备的管理需要了解有关可能撤掉维持生命治疗的法律、伦理、宗教原则。
在疾病早期就应与患者充分沟通不良事件、生命末期、治疗和干预的利弊、治疗偏好以及决策等问题。应清楚记录并定期审查高级护理计划的过程。
心力衰竭姑息治疗的障碍包括临床问题(疾病病程)、预后不确定性、未能识别需要姑息治疗的患者以及转诊至专科服务的时机,还有患者、家庭和医护人员对姑息治疗作用的误解、组织问题,以及最后的教育和时间问题。
(i)根据临床和社会心理问题确定适合姑息治疗的心力衰竭患者;(ii)确定触发事件和转诊时机;(iii)确定用于测量、评估和随访终末期心力衰竭症状和生活质量的适当性能指标/量表,包括患者报告的结局指标;(iv)晚期/终末期心力衰竭的治疗、护理和组织策略及模式(“护理管理”);以及(v)在心力衰竭的沟通、伦理和高级护理计划领域对医护人员进行知识传授和教育。