Lindell Kathleen O, Liang Zhan, Hoffman Leslie A, Rosenzweig Margaret Q, Saul Melissa I, Pilewski Joseph M, Gibson Kevin F, Kaminski Naftali
The University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at UPMC, School of Medicine, Pittsburgh, PA; Division of Pulmonary, Allergy, and Critical Care Medicine, School of Medicine, Pittsburgh, PA.
School of Nursing, School of Medicine, Pittsburgh, PA.
Chest. 2015 Feb;147(2):423-429. doi: 10.1378/chest.14-1127.
Palliative care, integrated early, may reduce symptom burden in patients with idiopathic pulmonary fibrosis (IPF). However, limited information exists on timing and clinical practice. The purpose of this study was to describe the time course of events prior to death in patients with IPF managed at a specialty center with a focus on location of death and timing of referral for palliative care.
Data were retrospectively extracted from the health system's data repository and obituary listings. The sample included all decedents, excluding lung transplant recipients, who had their first visit to the center between 2000 and 2012.
Median survival for 404 decedents was 3 years from diagnosis and 1 year from first center visit. Of 277 decedents whose location of death could be determined, > 50% died in the hospital (57%). Only 38 (13.7%) had a formal palliative care referral and the majority (71%) was referred within 1 month of their death. Decedents who died in the academic medical center ICU were significantly younger than those who died in a community hospital ward (P = .04) or hospice (P = .001).
The majority of patients with IPF died in a hospital setting and only a minority received a formal palliative care referral. Referral to palliative care occurred late in the disease. These findings indicate the need to study adequacy of end-of-life management in IPF and promote earlier discussion and referral to palliative care.
早期综合姑息治疗可能减轻特发性肺纤维化（IPF）患者的症状负担。然而，关于时机和临床实践的信息有限。本研究的目的是描述在一家专科中心接受治疗的IPF患者死亡前的事件时间进程，重点是死亡地点和姑息治疗转诊时机。
数据从卫生系统的数据存储库和讣告列表中回顾性提取。样本包括2000年至2012年间首次到该中心就诊的所有死者，但不包括肺移植受者。
404名死者的中位生存期从诊断起为3年，从首次到中心就诊起为1年。在277名死亡地点可确定的死者中，超过50%（57%）在医院死亡。只有38名（13.7%）患者接受了正式的姑息治疗转诊，且大多数（71%）是在死亡前1个月内转诊的。在学术医疗中心重症监护病房死亡的死者比在社区医院病房（P = 0.04）或临终关怀机构（P = 0.001）死亡的死者明显年轻。
大多数IPF患者在医院环境中死亡，只有少数患者接受了正式的姑息治疗转诊。姑息治疗转诊在疾病晚期才进行。这些发现表明有必要研究IPF患者临终管理的充分性，并促进更早地讨论和转诊至姑息治疗。
