McCaughan Dorothy, Roman Eve, Smith Alexandra G, Garry Anne, Johnson Miriam, Patmore Russell, Howard Martin, Howell Debra A
Epidemiology & Cancer Statistics Group, Seebohm Rowntree Building, University of York, York, UK.
Department of Palliative Care, York Hospital, York, UK.
BMJ Support Palliat Care. 2018 Mar;8(1):78-86. doi: 10.1136/bmjspcare-2016-001289. Epub 2017 Jun 29.
Current UK health policy promotes enabling people to die in a place they choose, which for most is home. Despite this, patients with haematological malignancies (leukaemias, lymphomas and myeloma) are more likely to die in hospital than those with other cancers, and this is often considered a reflection of poor quality end-of-life care. This study aimed to explore the experiences of clinicians and relatives to determine why hospital deaths predominate in these diseases.
The study was set within the Haematological Malignancy Research Network (HMRN-www.hmrn.org), an ongoing population-based cohort that provides infrastructure for evidence-based research. Qualitative interviews were conducted with clinical staff in haematology, palliative care and general practice (n=45) and relatives of deceased HMRN patients (n=10). Data were analysed for thematic content and coding and classification was inductive. Interpretation involved seeking meaning, salience and connections within the data.
Five themes were identified relating to: the characteristics and trajectory of haematological cancers, a mismatch between the expectations and reality of home death, preference for hospital death, barriers to home/hospice death and suggested changes to practice to support non-hospital death, when preferred.
Hospital deaths were largely determined by the characteristics of haematological malignancies, which included uncertain trajectories, indistinct transitions and difficulties predicting prognosis and identifying if or when to withdraw treatment. Advance planning (where possible) and better communication between primary and secondary care may facilitate non-hospital death.
英国当前的卫生政策提倡让人们在自己选择的地方离世,对大多数人而言就是在家中。尽管如此,血液系统恶性肿瘤(白血病、淋巴瘤和骨髓瘤)患者比其他癌症患者更有可能在医院死亡,这通常被视为临终护理质量不佳的一种体现。本研究旨在探究临床医生和亲属的经历,以确定为何这些疾病的患者多在医院死亡。
该研究在血液系统恶性肿瘤研究网络(HMRN - www.hmrn.org)中开展,这是一个持续进行的基于人群的队列研究,为循证研究提供基础设施。对血液科、姑息治疗科和全科医疗的临床工作人员(n = 45)以及已故HMRN患者的亲属(n = 10)进行了定性访谈。对数据进行了主题内容分析,编码和分类采用归纳法。解读涉及在数据中寻找意义、显著性和联系。
确定了五个主题,分别涉及:血液系统癌症的特征和病程、家庭死亡的期望与现实之间的不匹配、对医院死亡的偏好、家庭/临终关怀机构死亡的障碍以及为支持非医院死亡(若有此偏好)而建议的实践改变。
医院死亡很大程度上由血液系统恶性肿瘤的特征决定,这些特征包括病程不确定、过渡不明显以及预测预后和确定是否或何时停止治疗存在困难。提前规划(若可能)以及初级和二级医疗之间更好的沟通可能有助于实现非医院死亡。