1 Epidemiology and Cancer Statistics Group, University of York, York, UK.
2 Department of Palliative Care, York Hospital, York, UK.
Palliat Med. 2019 May;33(5):518-530. doi: 10.1177/0269216318824525. Epub 2019 Jan 30.
People with haematological malignancies have different end-of-life care patterns from those with other cancers and are more likely to die in hospital. Little is known about patient and relative preferences at this time and whether these are achieved.
To explore the experiences and reflections of bereaved relatives of patients with leukaemia, lymphoma or myeloma, and examine (1) preferred place of care and death; (2) perceptions of factors influencing attainment of preferences; and (3) changes that could promote achievement of preferences.
Qualitative interview study incorporating 'Framework' analysis.
SETTING/PARTICIPANTS: A total of 10 in-depth interviews with bereaved relatives.
Although most people expressed a preference for home death, not all attained this. The influencing factors include disease characteristics (potential for sudden deterioration and death), the occurrence and timing of discussions (treatment cessation, prognosis, place of care/death), family networks (willingness/ability of relatives to provide care, knowledge about services, confidence to advocate) and resource availability (clinical care, hospice beds/policies). Preferences were described as changing over time and some family members retrospectively came to consider hospital as the 'right' place for the patient to have died. Others shared strong preferences with patients for home death and acted to ensure this was achieved. No patients died in a hospice, and relatives identified barriers to death in this setting.
Preferences were not always achieved due to a series of complex, interrelated factors, some amenable to change and others less so. Death in hospital may be preferred and appropriate, or considered the best option in hindsight.
与其他癌症患者相比，血液系统恶性肿瘤患者的临终关怀模式有所不同，他们更有可能在医院去世。目前，人们对患者和家属在这方面的偏好及其是否得到满足知之甚少。
探讨白血病、淋巴瘤或骨髓瘤患者的家属在丧亲后的经历和反思，并探讨：（1）首选的关怀和死亡地点；（2）影响偏好实现的因素的看法；（3）可以促进偏好实现的变化。
采用定性访谈研究，结合“框架”分析。
地点/参与者：共对 10 名丧亲的家属进行了深入访谈。
尽管大多数人表示希望在家中去世，但并非所有人都能如愿。影响因素包括疾病特征（潜在的突然恶化和死亡）、讨论的发生和时间（停止治疗、预后、关怀地点/死亡）、家庭网络（亲属提供关怀的意愿/能力、对服务的了解、倡导的信心）和资源可用性（临床护理、临终关怀床位/政策）。偏好被描述为随着时间的推移而变化，一些家属后来认为医院是患者去世的“正确”地点。还有一些家属与患者有强烈的在家中去世的偏好，并采取行动确保这一愿望得以实现。没有患者在临终关怀机构去世，而家属认为在这种环境下死亡存在障碍。
由于一系列复杂的、相互关联的因素，偏好并非总是能够实现，其中一些因素是可以改变的，而另一些因素则不然。在医院去世可能是首选和合适的，或者事后被认为是最佳选择。
