Primary Palliative Care Research Group, Community Health Sciences - General Practice, University of Edinburgh, Edinburgh EH89DX, UK.
Palliat Med. 2009 Dec;23(8):767-76. doi: 10.1177/0269216309346541. Epub 2009 Nov 19.
The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.
本研究旨在从多个角度评估晚期心力衰竭患者服务的关键组成部分，并根据英国关于长期疾病、姑息治疗和临终关怀的政策，就如何提供护理提出建议。在 2 年时间里，对 162 名患者、关联病例的家庭护理人员和专业人员（n=162）进行了系列访谈；随后，有 32 名患者、护理人员和主要专业人员参加了涉及他们的四个焦点小组。该研究包括来自英国一个具有不同心力衰竭护理模式的卫生区域的 36 名晚期心力衰竭患者、30 名家庭护理人员和 62 名专业人员。参与者证实了由主要卫生专业人员协调护理、全面评估和定期监测的重要性。由于初级保健中的优先事项相互竞争，导致时间和资源短缺，无法应对心力衰竭疾病轨迹的波动，对专科护士直接护理或更具咨询性角色之间的平衡以及判断何时转向姑息治疗的困难，这些都阻碍了患者获得积极主动的护理服务。本研究开发了一个心力衰竭护理框架，其中包括关键阶段和服务响应。我们的结论是，需要姑息治疗的长期疾病患者应根据实用标准进行识别和管理，这些标准包括积极转变护理目标。
