Chest
Original Research: Diffuse Lung DiseasePalliative Care and Location of Death in Decedents With Idiopathic Pulmonary Fibrosis
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
References (26)
- et al.
Survival benefit of lung transplantation for patients with idiopathic pulmonary fibrosis
J Thorac Cardiovasc Surg
(2003) - et al.
Ventilator settings and outcome of respiratory failure in chronic interstitial lung disease
Chest
(2008) - et al.
Impact of a disease-management program on symptom burden and health-related quality of life in patients with idiopathic pulmonary fibrosis and their care partners
Heart Lung
(2010) - et al.
The medical archival system: an information retrieval system based on distributed parallel processing
Inf Process Manage
(1991) - et al.
Referral to palliative care in COPD and other chronic diseases: a population-based study
Respir Med
(2013) - et al.
Physician practices for communicating with patients with cystic fibrosis about the use of noninvasive and invasive mechanical ventilation
Chest
(2012) - et al.
Barriers to optimal palliative care of lung transplant candidates
Chest
(2013) - et al.
Patient experiences with pulmonary fibrosis
Respir Med
(2007) - et al.
Changing end-of-life care practice for liver transplant service patients: structured palliative care intervention in the surgical intensive care unit
J Pain Symptom Manage
(2012) - et al.
Idiopathic pulmonary fibrosis
Semin Respir Crit Care Med
(2012)
Idiopathic pulmonary fibrosis: relationship between histopathologic features and mortality
Am J Respir Crit Care Med
ATS/ERS/JRS/ALAT Committee on Idiopathic Pulmonary Fibrosis An official ATS/ERS/JRS/ALAT statement: idiopathic pulmonary fibrosis: evidence-based guidelines for diagnosis and management
Am J Respir Crit Care Med
Acute exacerbation of idiopathic pulmonary fibrosis: incidence, risk factors and outcome
Eur Respir J
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2022, ChestCitation Excerpt :The benefits of palliative care also extend to patients with nonmalignant diseases such as heart failure, where specialist palliative care is associated with reduced health-care use, more home deaths, and more cost-effective care, among other positive outcomes.28-31 Patients with COPD, however, rarely receive palliative care, and if they do, it is often only very late in the disease course compared with patients with cancer and other advanced lung diseases.32-34 This is perplexing because patients with COPD can have more prevalent anxiety, depression, and refractory breathlessness than those with advanced cancer.35
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.