Centre for Population Health Sciences: GP Section, University of Edinburgh, UK.
BMJ. 2011 Jan 24;342:d142. doi: 10.1136/bmj.d142.
To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD.
Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives.
21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients.
Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.
Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a "way of life" rather than an "illness." Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a "chaos narrative" of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population.
Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.
了解病情进展中严重慢性阻塞性肺疾病（COPD）患者及其非专业和专业护理人员的观点，为 COPD 患者的生活和临终护理提供信息。
在 18 个月内对每位患者和指定护理人员进行最多 4 次连续定性访谈。对访谈进行了主题分析和叙述分析。
21 名患者，以及 13 名非专业护理人员（家庭成员、朋友或邻居）和 18 名专业护理人员（主要卫生或社会保健专业人员）由患者提名。
2007-2009 年苏格兰洛锡安区、泰赛德区和福斯谷区的初级和二级保健机构。
11 名患者在研究期间死亡。我们的最终数据集包括 92 次访谈（其中 23 次是与患者和非专业护理人员一起进行的）。严重症状严重扰乱了正常生活，这些症状通常用暗示接受这种情况是一种“生活方式”而不是一种“疾病”的术语来描述。患者及其非专业护理人员适应并接受了终身疾病的衰弱症状。专业护理人员对患者病情的熟悉程度，通常是多年来的熟悉程度，以及预后的不确定性，导致难以识别和积极管理终末期疾病。总的来说，患者讲述了他们疾病的“混乱叙述”，这与他们的人生故事难以区分，没有明确的开始，也没有用与正常老年人群体对死亡的态度可比的术语来描述不可预见的结局。
我们的研究结果挑战了当前为 COPD 患者提供临终关怀的基本假设。政策重点是确定向姑息治疗过渡的时间点，这与 COPD 患者或他们的临床医生没有共鸣，如果它分散了对 COPD 患者一生中早期引入支持性护理的注意力，那将是适得其反的。应在 COPD 患者一生中的关键疾病里程碑上，特别是在因加重而住院后，对可能的支持性和姑息性护理需求进行仔细评估。
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