1 Division of Cancer Control and Population Sciences, National Cancer Institute , NIH, Bethesda, Maryland.
2 ICF International, Inc. , Rockville, Maryland.
J Palliat Med. 2018 May;21(5):616-621. doi: 10.1089/jpm.2017.0445. Epub 2018 Feb 1.
Palliative care (PC) is often misunderstood as exclusively pertaining to end-of-life care, which may be consequential for its delivery. There is little research on how PC is operationalized and delivered to cancer patients enrolled in clinical trials.
We sought to understand the diverse perspectives of multidisciplinary oncology care providers caring for such patients in a teaching hospital.
We conducted qualitative semistructured interviews with 19 key informants, including clinical trial principal investigators, oncology fellows, research nurses, inpatient and outpatient nurses, spiritual care providers, and PC fellows. Questions elicited information about the meaning providers assigned to the term "palliative care," as well as their experiences with the delivery of PC in the clinical trial context. Using grounded theory, a team-based coding method was employed to identify major themes.
Four main themes emerged regarding the meaning of PC: (1) the holistic nature of PC, (2) the importance of symptom care, (3) conflict between PC and curative care, and (4) conflation between PC and end-of-life care. Three key themes emerged with regard to the delivery of PC: (1) dynamics among providers, (2) discussing PC with patients and family, and (3) the timing of PC delivery.
There was great variability in personal meanings of PC, conflation with hospice/end-of-life care, and appropriateness of PC delivery and timing, particularly within cancer clinical trials. A standard and acceptable model for integrating PC concurrently with treatment in clinical trials is needed.
姑息治疗(PC)常常被误解为仅适用于临终关怀,这可能对其实施产生影响。关于姑息治疗在临床试验中如何运作和提供给癌症患者的研究甚少。
我们旨在了解教学医院中为这些患者提供多学科肿瘤护理的医护人员的不同观点。
我们对 19 名关键信息提供者(包括临床试验主要研究者、肿瘤学研究员、研究护士、住院和门诊护士、精神护理提供者和姑息治疗研究员)进行了定性半结构式访谈。问题旨在了解提供者对“姑息治疗”一词的含义,以及他们在临床试验背景下提供姑息治疗的经验。使用扎根理论,采用团队式编码方法确定主要主题。
关于姑息治疗的含义,有四个主要主题:(1)姑息治疗的整体性质;(2)症状护理的重要性;(3)姑息治疗与根治性治疗之间的冲突;(4)姑息治疗与临终关怀的混淆。关于姑息治疗的提供,有三个关键主题:(1)提供者之间的动态;(2)与患者和家属讨论姑息治疗;(3)姑息治疗的提供时间。
个人对姑息治疗的理解存在很大差异,姑息治疗与临终关怀/临终关怀的混淆以及姑息治疗的提供和时间安排的适当性,特别是在癌症临床试验中。需要制定一种标准且可接受的模型,以便在临床试验中同时将姑息治疗与治疗相结合。