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Correspondence |

Cultural Differences in Palliative Care in Patients With Idiopathic Pulmonary FibrosisCultural Differences in Palliative Care in IPF FREE TO VIEW

Marlies Wijsenbeek, MD, PhD; Elisabeth Bendstrup, MD, PhD; Joy Ross, MD, PhD; Athol Wells, MD
Author and Funding Information

From the Department of Pulmonary Medicine (Dr Wijsenbeek), Erasmus MC, University Medical Center Rotterdam; Department of Respiratory Diseases and Allergy (Dr Bendstrup), Aarhus University Hospital; The Royal Marsden & Royal Brompton Palliative Care Service (Dr Ross), The Royal Marsden NHS Foundation Trust; and Interstitial Lung Disease Unit (Dr Wells), Royal Brompton Hospital, Royal Brompton & Harefield NHS Foundation Trust.

CORRESPONDENCE TO: Marlies Wijsenbeek, MD, PhD, Department of Pulmonary Medicine, Erasmus MC, University Medical Center Rotterdam, Gravendijkwal 230, 3015 CE Rotterdam, The Netherlands; e-mail: m.wijsenbeek-lourens@erasmusmc.nl


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FINANCIAL/NONFINANCIAL DISCLOSURES: The authors have reported to CHEST that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.


Chest. 2015;148(2):e56. doi:10.1378/chest.15-0705
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To the Editor:

We congratulate Lindell and colleagues1 on their recent article in CHEST (February 2015) on palliative care and location of death in idiopathic pulmonary fibrosis (IPF). Despite advances in treatments that slow disease progression, IPF remains a fatal disease. Radical treatment (ie, to alter the natural history) and palliative therapies often coincide, creating uncertainties as to the timing of palliative care referral, to best meet the needs of the patient, family, and care providers.2,3 Lindell and colleagues1 show that referral to palliative care occurred in a minority of patients and only late in the disease. They also showed that the majority of patients with IPF died in the hospital (57%), with 33% dying in the ICU.1,4 The remaining 43% of patients died in a hospice. These findings are discordant with our combined experience, causing us to speculate that cultural factors might be a highly influential determinant of communication about palliation and place of dying.

To explore wider European experience, we asked 51 European IPF experts at the Advancing IPF Research 2014 meeting in Copenhagen, using an interactive voting system, the following question: “Where do the majority of your patients with IPF die?” The possible responses were identical to the terms used by Lindell and colleagues,1 with the additional option of “at home.” Thirty-nine experts from 15 different countries chose to participate; 70% answered that the majority of their patients died in the hospital, with 8% dying in the ICU and the remaining experts choosing “at home.” We acknowledge that it is not possible to compare the findings of Lindell and colleagues1 directly with this poll as respondents were asked only to state the place of death in the majority of their patients with IPF.

To explore this further, we looked retrospectively at the location of death in patients with IPF in our centers. In two centers combined, in the past year 29 patients with IPF died: 59% died in the hospital (with 7% dying in the ICU), 38% died at home, and it was unknown where the remaining 3% died. In the third center, implementation of a palliative program resulted in 28% of patients with IPF dying in the hospital, a major reduction. We realize the limitations caused by differences in methodology of collection and time studied compared with the original study. However, both findings are consistent with a wider European experience that patients with IPF seldom die in an ICU or a hospice. Cultural differences may play an important role and should be investigated and taken into consideration when striving to optimize palliative care in patients with IPF.

References

Lindell KO, Liang Z, Hoffman LA, et al. Palliative care and location of death in decedents with idiopathic pulmonary fibrosis. Chest. 2015;147(2):423-429. [CrossRef] [PubMed]
 
Lee JS, McLaughlin S, Collard HR. Comprehensive care of the patient with idiopathic pulmonary fibrosis. Curr Opin Pulm Med. 2011;17(5):348-354. [CrossRef] [PubMed]
 
Bajwah S, Higginson IJ, Ross JR, et al. The palliative care needs for fibrotic interstitial lung disease: a qualitative study of patients, informal caregivers and health professionals. Palliat Med. 2013;27(9):869-876. [CrossRef] [PubMed]
 
Lindell KO, Liang Z, Hoffman L, et al. Time and location of death in patients with idiopathic pulmonary fibrosis - experience of a specialty referral center [abstract]. Am J Respir Crit Care Med. 2014;189:A1453.
 

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References

Lindell KO, Liang Z, Hoffman LA, et al. Palliative care and location of death in decedents with idiopathic pulmonary fibrosis. Chest. 2015;147(2):423-429. [CrossRef] [PubMed]
 
Lee JS, McLaughlin S, Collard HR. Comprehensive care of the patient with idiopathic pulmonary fibrosis. Curr Opin Pulm Med. 2011;17(5):348-354. [CrossRef] [PubMed]
 
Bajwah S, Higginson IJ, Ross JR, et al. The palliative care needs for fibrotic interstitial lung disease: a qualitative study of patients, informal caregivers and health professionals. Palliat Med. 2013;27(9):869-876. [CrossRef] [PubMed]
 
Lindell KO, Liang Z, Hoffman L, et al. Time and location of death in patients with idiopathic pulmonary fibrosis - experience of a specialty referral center [abstract]. Am J Respir Crit Care Med. 2014;189:A1453.
 
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