Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study
Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study
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DOI：
10.1007/s00520-004-0759-2
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发表时间：
2005-08-01
影响因子：
3.1
通讯作者：
Tattersall, MHN
中科院分区：
文献类型：
--
作者：
Clayton, JM;Butow, PN;Tattersall, MHN
工作目标：讨论临终问题对于绝症癌症患者及其家人至关重要，对于卫生专业人员和患者/护理人员来说也是一个具有挑战性的话题。文献中缺乏指导临床实践的研究证据。本研究的目的是探索与绝症癌症患者及其护理人员讨论死亡过程和临终问题时的最佳信息内容和措辞。主题和方法：我们对来自悉尼三个姑息治疗服务机构的 19 名姑息治疗患者和 24 名护理人员，以及来自澳大利亚各地的 22 名姑息治疗医疗专业人员进行了焦点小组和个人访谈。焦点小组和个人访谈均被录音并完全转录。进行进一步的焦点小组和/或个人访谈，直到没有提出其他话题为止。使用定性方法分析参与者的叙述。主要结果：讨论临终问题出现了不同的内容领域：临终时的治疗决定；未来潜在的症状；对死亡地点的偏好；死亡的过程；死后需要立即做什么；和存在问题。在讨论死亡过程时，参与者建议：探索人们对死亡的恐惧并消除神话；描述最后几天和可能的无意识时期；以及对食物和液体的需求减少。许多参与者发现了是否讨论死亡前后潜在并发症的困境。结论：本文提供了一些策略、词语和短语，可以为有关死亡过程和临终问题的讨论提供信息。需要进一步的研究来确定这些发现的普遍性。
Goals of work: Discussing end-of-life issues is of key importance to terminally ill cancer patients and their families, and a challenging topic for both health professionals and patients/carers. There is a lack of research evidence in the literature to guide clinical practice. The objective of this study was to explore the optimal content and phrasing of information when discussing the dying process and end-of-life issues with terminally ill cancer patients and their carers. Subjects and methods: We conducted focus groups and individual interviews with 19 palliative care patients and 24 carers from three palliative care services in Sydney, and 22 palliative care health professionals from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants' narratives were analysed using qualitative methodology. Main results: Distinct content areas emerged for discussing end-of-life issues: treatment decisions at the end-of-life; potential future symptoms; preferences for place of death; the process of dying; what needs to be done immediately after death; and existential issues. When discussing the process of dying participants recommended: exploring the persons' fears about dying and dispelling myths; describing the final days and the likely unconscious period; and the reduced need for food and fluids. Many participants identified the dilemma regarding whether to discuss potential complications around the time of death. Conclusions: This paper provides strategies, words and phrases which may inform discussions about the process of dying and end-of-life issues. Further research is needed to determine the generalizability of these findings.