Department of Physiology, 98623University of Alberta, Edmonton, Alberta, Canada.
Provincial Research Data Services, 3146Alberta Health Services, Edmonton, Alberta, Canada.
Am J Hosp Palliat Care. 2021 Feb;38(2):104-113. doi: 10.1177/1049909120924995. Epub 2020 May 20.
Interstitial lung diseases (ILDs) comprise a heterogeneous group of fibrotic, progressive pulmonary diseases characterized by poor end-of-life care and hospital deaths. In 2012, we launched our Multidisciplinary Collaborative (MDC) ILD clinic to deliver integrated palliative approach throughout disease trajectory to improve care. We sought to explore the effects of palliative care and other factors on location of death (LOD) of patients with ILD.
The MDC-ILD clinic implemented a palliative care bundle including advance care planning (ACP), opiates use, allied health home care engagement, and use of supplemental oxygen and early caregiver engagement in care. Data from patients with ILD who attended the clinic and died between 2012 and 2019 were used to generate scores representing the components and duration of palliative care (palliative care bundle score) and caregiver involvement (caregiver engagement score). We examined the impact of these scores on patients' LOD.
A total of 92 MDC-ILD clinic patients were included, 57 (62%) had home or hospice deaths. Patients who died at home or hospice had higher palliative care bundle scores (10.0 ± 4.0 vs 7.8 ± 3.9, = .01) and caregiver engagement scores (1.7 ± 0.6 vs 1.3 ± 0.7, = .01) compared to those who died in hospital. Patients were 1.13 times more likely to die at home or hospice following a 1-point increase in palliative care bundle score (95% CI: 1.01-1.29, = .04) and 2.38 times more likely following a 1-point increase in caregiver engagement score (95% CI: 1.17-5.15, = .02).
Home and hospice deaths are feasible in ILD. Early initiation of palliative care bundle components such as ACP discussions, symptom self-management, caregiver engagement, and close collaboration with allied health home care supports can promote adherence to patient preference for home or hospice deaths.
间质性肺疾病（ILDs）是一组异质性的纤维性、进行性肺部疾病，其特点是临终关怀和医院死亡较差。2012 年，我们开设了多学科协作（MDC）ILD 诊所，在整个疾病过程中提供综合姑息治疗方法，以改善护理。我们试图探讨姑息治疗和其他因素对ILD 患者死亡地点（LOD）的影响。
MDC-ILD 诊所实施了姑息治疗方案，包括预先护理计划（ACP）、阿片类药物使用、联合健康家庭护理参与、补充氧气和早期护理人员参与护理。使用 2012 年至 2019 年间在诊所就诊并死亡的ILD 患者的数据来生成代表姑息治疗（姑息治疗方案评分）和护理人员参与度（护理人员参与评分）组成部分和持续时间的评分。我们检查了这些评分对患者 LOD 的影响。
共纳入 92 例 MDC-ILD 诊所患者，57 例（62%）在家或临终关怀中死亡。在家或临终关怀中死亡的患者的姑息治疗方案评分（10.0 ± 4.0 与 7.8 ± 3.9， =.01）和护理人员参与评分（1.7 ± 0.6 与 1.3 ± 0.7， =.01）均较高。与在医院死亡的患者相比，患者的姑息治疗方案评分增加 1 分，在家或临终关怀中死亡的可能性增加 1.13 倍（95%CI：1.01-1.29， =.04），护理人员参与评分增加 1 分，在家或临终关怀中死亡的可能性增加 2.38 倍（95%CI：1.17-5.15， =.02）。
ILD 患者在家或临终关怀中死亡是可行的。及早启动姑息治疗方案的组成部分，如 ACP 讨论、症状自我管理、护理人员参与以及与联合健康家庭护理的密切合作，可以促进患者对在家或临终关怀死亡的偏好的遵守。
