Strohbuecker Barbara, Gaertner Jan, Stock Stephanie
Institute for Health Economics and Clinical Epidemiology, University Hospital of Cologne, Germany.
Breast Care (Basel). 2011;6(1):8-13. doi: 10.1159/000324563. Epub 2011 Feb 15.
The scope of palliative care has expanded gradually over the last decade. Provision of palliative care is not restricted to the last months of life as in some out-dated concepts. It addresses the needs of severely ill patients in all care settings (in- and outpatients, home care, hospices). Particularly in the last years, the value of integrating palliative care early in the disease trajectory of life-threatening and incurable diseases has become increasingly acknowledged. In order for patients to fully benefit from the concept of early integration of palliative care, they need to be provided with information tailored to their disease trajectory. For example, patients and relatives need to know how symptoms such as pain, depression, fatigue, breathlessness, or anxiety can be alleviated. The patients' knowledge and understanding will support the coping process, improve comfort and enhance patient participation and autonomy. Since information needs are highly individual and vary throughout the course of the disease, an interactive approach of assessing the patients' needs and responding to them adequately is mandatory. In this article, the information needs of advanced cancer patients and their families are explained, shortcomings of the present information concepts are discussed, and an integrative approach to responding to patients' information needs throughout the care pathway is advocated.
在过去十年中，姑息治疗的范围逐渐扩大。与一些过时的观念不同，姑息治疗的提供并不局限于生命的最后几个月。它满足了所有护理环境（门诊和住院患者、家庭护理、临终关怀机构）中重症患者的需求。特别是在最近几年，人们越来越认识到在危及生命和无法治愈疾病的病程早期就整合姑息治疗的价值。为了使患者充分受益于姑息治疗早期整合的理念，需要为他们提供根据其疾病进程量身定制的信息。例如，患者和亲属需要知道如何缓解疼痛、抑郁、疲劳、呼吸困难或焦虑等症状。患者的知识和理解将有助于应对过程，提高舒适度，并增强患者的参与度和自主性。由于信息需求高度个体化且在疾病过程中会有所变化，因此采用互动方式评估患者需求并做出充分回应是必不可少的。在本文中，将解释晚期癌症患者及其家属的信息需求，讨论当前信息概念的不足之处，并倡导在整个护理过程中采用综合方法来满足患者的信息需求。
