Chest
Volume 147, Issue 2, February 2015, Pages 423-429
Journal home page for Chest

Original Research: Diffuse Lung Disease
Palliative Care and Location of Death in Decedents With Idiopathic Pulmonary Fibrosis

https://doi.org/10.1378/chest.14-1127Get rights and content

BACKGROUND

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.

METHODS

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.

RESULTS

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).

CONCLUSIONS

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.

Section snippets

Setting

Data were extracted retrospectively for decedents with IPF who had their first visit to the University of Pittsburgh Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease (ILD) between 2000 and 2012. The Simmons Center, a large specialty ILD program affiliated with the University of Pittsburgh Medical Center, annually evaluates approximately 200 new patients with IPF referred from national and international locations. The study was approved by the University of Pittsburgh

Demographic and Clinical Characteristics

The 404 decedents were predominately men (65.6%) and white (97.3%). Mean age at death was 71.5 years (SD ! 9.2 years). Mean FVC % predicted and Dlco % predicted at the first center visit were 60.5% ! 18.1% and 41.2% ! 16.7%, respectively (Table 1). Those whose location of death could not be identified were older (P = .04) and more likely to be women (P = .06).

Time From Diagnosis and First Center Visit to Death

Median survival from diagnosis was 3 years (interquartile range, 1-5 years). Median survival from first center visit was 1 year

Discussion

To our knowledge, this is the first relatively large study to describe the time course of events prior to death in patients with IPF, with a focus on referral to palliative care and location of death. The majority died in the hospital and few (13.7%) received formal referral to palliative care. Referral to palliative care typically occurred late in the course of their disease, a finding of significant concern. Optimally, given the typically relentless progression of IPF and inability to predict

Conclusions

The consistent delay in referrals, significant percentage of patients dying in the hospital, and small number of formal referrals to palliative care suggest that significant effort is needed to establish new guidelines, with specific attention to timely referral to transplant and early discussion about palliative care. In critical care settings, concerns about timing have been addressed by initiating early referral for all patients, regardless of acuity.26 Because the disease course of IPF is

Acknowledgments

Author contributions: K. O. L. had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. K. O. L. contributed to the study concept and served as principal author. K. O. L., Z. L., L. A. H., K. F. G., and N. K., contributed to the study design. K. O. L. and Z. L. contributed to data collection. K. O. L., Z. L., and L. A. H. contributed to data analysis. K. O. L., Z. L., L. A. H., and M. Q. R. contributed to the

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    FUNDING/SUPPORT: This study was supported by the Dorothy P. and Richard P. Simmons endowed chair for Interstitial Lung Disease and the National Institutes of Health [Grant UL1TR000005].Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.

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