School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Queen's Medical Centre campus, B Floor, South Block Link, Nottingham, NG7 2UH, UK.
BMC Palliat Care. 2012 Sep 17;11:15. doi: 10.1186/1472-684X-11-15.
This study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients' preferences for place of care (and death) were facilitated and documented.
The study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.
Patients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.
This study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.
本研究探讨了患者、护理人员和医疗保健专业人员关于患者对护理地点（和死亡）偏好的预先护理计划对话是如何被促进和记录的。
该研究采用探索性案例研究设计，使用定性访谈，跨越五个提供癌症和非癌症患者姑息治疗的服务，位于一个城市和农村的英国地区。研究招募了 18 例患者（N=18；10 名男性；8 名女性；中位数年龄 75 岁）、指定的亲属（N=11；7 名女性；4 名男性；中位数年龄 65 岁）和护理患者的医疗保健专业人员（N=15）。数据收集包括：18 次初始访谈（9 次单独与患者访谈和 9 次与患者和亲属的联合访谈）和 1 年内对 6 例患者（共涉及 5 名患者和 5 名亲属）的随访访谈。对 15 名医疗保健专业人员进行了 5 次小组访谈；其中 8 人还参加了随访访谈，以审查他们在我们的研究中与患者的参与情况。
患者表现出不同程度的沉默、回避或不愿主动发起任何关于临终关怀偏好的对话。大多数人认为工作人员会发起这样的对话，而工作人员往往犹豫不决。工作人员确定的障碍包括带走希望的风险和时间问题。工作人员通常是根据患者的暗示或直觉来指导何时开始这些讨论。
本研究深入了解了与被确定为有姑息治疗需求的患者启动预先护理计划对话的复杂性，特别是在涉及必须承认死亡的过程中的固有风险时。需要进一步研究如何制定干预措施来帮助启动对话，以制定以患者为中心的计划来管理生命末期。
