Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved.
Advanced chronic liver disease in the last year of life: a mixed methods study to understand how care in a specialist liver unit could be improved.
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DOI：
10.1136/bmjopen-2017-016887
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发表时间：
2017-08-29
期刊：
影响因子：
2.9
通讯作者：
Jones L
中科院分区：
文献类型：
--
作者：
Low J;Davis S;Vickerstaff V;Greenslade L;Hopkins K;Langford A;Marshall A;Thorburn D;Jones L
确定肝硬化患者生命最后一年姑息治疗提供的局限性以及姑息治疗的潜在障碍和促进因素。
混合方法，包括回顾性病例记录审查、定性焦点小组和个人访谈。
英国南部的一个三级转诊肝病中心。
有目的地选取了30名在该三级转诊肝病中心就诊且在18个月期间死亡的肝硬化患者的病例记录；有目的地选取了22名参与焦点小组或个人访谈的肝脏健康专业人员作为样本。
从病例记录中收集的数据包括住院情况、对预后的记录讨论以及姑息治疗的提供情况。定性方法探究了肝硬化患者的管理以及姑息治疗的障碍和促进因素。
参与者的住院率和症状负担较高。临床医生很少讨论预后或未来的护理偏好；他们缺乏发起讨论的技能和信心。姑息治疗提供较晚，因为临床医生由于认为肝功能下降是可逆的、对姑息治疗方法的潜力理解不足而不愿转诊；患者和家属对姑息治疗持负面看法。
死于肝硬化的患者病程难以预测，但随着死亡临近，都有频繁住院和症状恶化的共同路径。使用临床工具来确定不可逆恶化的节点以及肝脏服务部门和姑息治疗部门之间的协同工作可能会改善肝硬化患者的护理。
To identify the limitations in palliative care provision in the last year of life for people with liver cirrhosis and potential barriers to and enablers of palliative care. Mixed methods, including a retrospective case note review, qualitative focus groups and individual interviews. A tertiary referral liver centre in the south of England (UK). Purposively selected case notes of 30 people with cirrhosis who attended the tertiary referral liver centre and died during an 18-month period; a purposive sample of 22 liver health professionals who participated in either focus groups or individual interviews. Data collected from case notes included hospital admissions, documented discussions of prognosis and palliative care provision. Qualitative methods explored management of people with cirrhosis, and barriers to and enablers of palliative care. Participants had high rates of hospital admissions and symptom burden. Clinicians rarely discussed prognosis or future care preferences; they lacked the skills and confidence to initiate discussions. Palliative care provision occurred late because clinicians were reluctant to refer due to their perception that reduced liver function is reversible, poor understanding of the potential of a palliative approach; palliative care was perceived negatively by patients and families. People dying with cirrhosis have unpredictable trajectories, but share a common pathway of frequent admissions and worsening symptoms as death approaches. The use of clinical tools to identify the point of irreversible deterioration and joint working between liver services and palliative care may improve care for people with cirrhosis.
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