1 Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia.
2 Department of Medicine, The University of Melbourne, Parkville, VIC, Australia.
Palliat Med. 2017 Oct;31(9):825-832. doi: 10.1177/0269216317696420. Epub 2017 Apr 3.
Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers.
To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings.
Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework.
SETTING/PARTICIPANTS: Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia.
Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired.
While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.
尽管有证据表明应尽早将姑息治疗纳入晚期癌症患者及其家庭的治疗中，但仍存在晚期介入的情况。先前的研究主要集中在卫生专业人员对姑息治疗的态度上，很少有研究探讨患者及其护理人员的观点。
在澳大利亚的环境中，当首次向晚期癌症患者及其家庭提出姑息治疗时，探讨他们对姑息治疗的最初看法。
横断面、前瞻性、探索性定性设计，包括叙事式访谈，并以解释现象学框架为基础。
地点/参与者：从澳大利亚维多利亚州墨尔本一家三级大都市医院的癌症服务中，有针对性地抽取了 30 名英语为母语的晚期癌症患者（n=30）及其指定的家庭护理人员（n=25）参与研究。
当首次提出姑息治疗的概念时，患者和护理人员共同存在三种常见的初始观点：（1）治疗减少，（2）可能性减少，（3）选择减少。姑息治疗与被视为“较差”的治疗选择的减少性治疗系统、减少的希望和实现以前以治愈为中心的抱负的可能性以及在所有其他选择都已用尽的情况下对自己护理情况的选择减少有关。
尽管姑息治疗的早期整合趋势越来越明显，但本研究表明，患者和护理人员的理解并没有同步进步。需要开展有针对性的公共卫生宣传活动，以消除对姑息治疗作为“机构性死亡”的理解，并重新构建围绕姑息治疗的社区言论，将其从无力的死亡转变为选择、成就和可能性的信息。
