Standing Holly, Jarvis Helen, Orr James, Exley Catherine, Hudson Mark, Kaner Eileen, Hanratty Barbara
Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK.
BMJ Open. 2017 Sep 1;7(8):e017106. doi: 10.1136/bmjopen-2017-017106.
Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners' (GPs) perceptions of their role in managing end-stage liver disease.
To explore GPs' experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease.
Qualitative interview study, thematic analysis.
Purposive sample of 25 GPs from five regions of England.
GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients' social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area.
End-of-life care for patients with liver disease merits attention from both primary and secondary care services. Development of care pathways and equitable access to symptom relief should be a priority.
在英国,肝病是过早死亡的第三大常见原因。晚期肝病的症状往往难以治疗,但很少有患者能见到姑息治疗专家,且很大一部分患者在医院死亡。基层医疗已被认定为对肝病知识和认知匮乏的领域。对于全科医生(GP)在管理终末期肝病中所扮演角色的看法,人们了解甚少。
探讨全科医生对于基层医疗如何能加强肝病患者临终关怀的经验和看法。
定性访谈研究,主题分析。
来自英格兰五个地区的25名全科医生的目的性样本。
全科医生表示希望更密切地参与肝病患者的临终关怀,但指出了一些限制他们发挥作用的因素。这些因素主要分为三个方面:与病情直接相关的因素(症状管理以及将姑息治疗方法与持续医疗干预相结合的必要性);患者社会环境引发的问题(耻辱感、社会孤立以及肝病的社会后果)以及服务组织和提供方面的不足。在专科医院临床医生的支持下进行协作被视为至关重要,全科医生承认他们在这一领域缺乏经验和专业知识。
肝病患者的临终关怀值得基层和二级医疗服务机构关注。制定护理路径以及公平获得症状缓解的机会应成为优先事项。