Discipline of Medicine, University of Adelaide, Adelaide, South Australia, Australia.
Intern Med J. 2013 Feb;43(2):183-90. doi: 10.1111/j.1445-5994.2012.02791.x.
Chronic obstructive pulmonary disease (COPD) is an increasing cause of mortality. However, people with COPD are unlikely to receive care that meets the needs of themselves or their carers at the end of life.
To explore the needs of people with end-stage COPD in South Australia and develop recommendations for a model of care.
Three related studies were undertaken: in Study 1, 15 people with advanced COPD and their carers were interviewed twice, 6 months apart; Study 2 investigated views of an Expert Panel and Study 3 conducted focus groups and interviews with service providers and community groups to examine service availability and accessibility.
This project demonstrated that the needs of people with COPD are not being met. There was an absence of a coordinated pathway for support. Care was fragmented, episodic and reactive. The role of carers was poorly recognised. Health professionals identified the lack of a clear transition to an end-stage and significant barriers to obtaining support for activities of daily living. Communication issues were identified in all studies, including the absence of advance care planning conversations.
A flexible model of care is needed that assists people with COPD to navigate the health system. This should be patient centred and coordinated across primary, acute and community sectors. Neither respiratory nor palliative care services alone can adequately support people with COPD. The integration of a multidisciplinary palliative approach within a chronic disease management strategy will be central for the best care for people living with advanced COPD.
慢性阻塞性肺疾病（COPD）是导致死亡的一个日益严重的原因。然而，终末期 COPD 患者在生命末期不太可能获得满足其自身或照护者需求的护理。
探索南澳大利亚州终末期 COPD 患者的需求，并制定护理模式的建议。
进行了三项相关研究：在研究 1 中，对 15 名晚期 COPD 患者及其照护者进行了两次访谈，间隔 6 个月；研究 2 调查了专家小组的意见，研究 3 对服务提供者和社区团体进行了焦点小组和访谈，以检查服务的可用性和可及性。
该项目表明 COPD 患者的需求未得到满足。没有支持的协调途径。护理是分散的、偶发的和反应性的。照护者的角色没有得到充分认识。卫生专业人员确定缺乏明确的终末期过渡以及获得日常生活活动支持的重大障碍。在所有研究中都发现了沟通问题，包括缺乏预先护理计划对话。
需要一种灵活的护理模式，帮助 COPD 患者在卫生系统中进行导航。这应该以患者为中心，并在初级、急性和社区部门之间进行协调。呼吸和姑息治疗服务都不能充分支持 COPD 患者。在慢性病管理策略中整合多学科姑息治疗方法将是为晚期 COPD 患者提供最佳护理的核心。
