Elisabeth Bendstrup

Palliative care in interstitial lung disease: living well

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaperReviewResearchpeer-review

  • Michael Kreuter, Heidelberg Univ, Ruprecht Karl University Heidelberg, Ctr Interstitial & Rare Lung Dis, Pneumol & Resp Crit Care Med, Thoraxklin
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  • Elisabeth Bendstrup
  • Anne-Marie Russell, Imperial Coll London, Imperial College London, Ctr Environm Policy
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  • Sabrina Bajwah, Kings Coll London, University of London, Kings College London, Cicely Saunders Inst, Dept Palliat Care Policy & Rehabil
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  • Kathleen Lindell, Univ Pittsburgh, University of Pittsburgh, Pennsylvania Commonwealth System of Higher Education (PCSHE), Dorothy P & Richard P Simmons Ctr Interstitial Lu
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  • Yochai Adir, Technion Israel Inst Technol, Technion Israel Institute of Technology, Pulm Div, Lady Davis Carmel Med Ctr, Fac Med
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  • Crystal E. Brown, Univ Washington, University of Washington, University of Washington Seattle, Med Ctr
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  • Greg Calligaro, Univ Cape Town, University of Cape Town, Div Pulmonol, Dept Med
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  • Nicola Cassidy, Irish Lung Fibrosis Assoc
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  • Tamera J. Corte, Univ Sydney, University of Sydney, Royal Prince Alfred Hosp
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  • Klaus Geissler, Patient Support Grp Lungenfibrose eV
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  • Azza Adel Hassan, Alexandria Univ, Alexandria University, Med Res Inst, Clin Oncol Dept
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  • Kerri A. Johannson, Univ Calgary, University of Calgary, Dept Med, Div Gastroenterol
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  • Ronaldo Kairalla, Univ Sao Paulo, Universidade de Sao Paulo, Heart Inst InCor, Pulm Div, Med Sch
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  • Martin Kolb, McMaster Univ, McMaster University, Firestone Inst Resp Hlth, Dept Pathol Mol Med
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  • Yasuhiro Kondoh, Nagoya Univ, Nagoya University, Tosei Gen Hosp, Dept Resp Med & Allergy, Sch Med
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  • Sylvia Quadrelli, Buenos Aires British Hosp, Hospital Britanico de Buenos Aires
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  • Jeff Swigris, Natl Jewish Hlth, National Jewish Health, Interstitial Lung Dis Program
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  • Zarir Udwadia, PD Hinduja Natl Hosp & Med Res Ctr, Dept Resp Med
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  • Athol Wells, Imperial Coll London, Imperial College London, Natl Heart & Lung Inst, Fibrosis Res Grp
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  • Marlies Wijsenbeek, Erasmus Univ, Erasmus University Rotterdam, Dept Resp Med, Med Ctr

Progressive fibrotic interstitial lung diseases (ILDs) are characterised by major reductions in quality of life and survival and have similarities to certain malignancies. However, palliative care expertise is conspicuously inaccessible to many patients with ILD. Unmet patient and caregiver needs include effective pharmacological and psychosocial interventions to improve quality of life throughout the disease course, sensitive advanced care planning, and timely patient-centred end-of-life care. The incorrect perception that palliative care is synonymous with end-of-life care, with no role earlier in the course of ILD, has created a culture of neglect. Interventions that aim to improve life expectancy are often prioritised without rigorous assessment of the individual's health and psychosocial needs, thereby inadvertently reducing quality of life. As in malignant disorders, radical interventions to slow disease progression and palliative measures to improve quality of life should both be prioritised. Efficient patient-centred models of palliative care must be validated, taking into account religious and cultural differences, as well as variability of resources. Effective implementation of palliative care for ILD will require multidisciplinary participation from clinicians, specialist nurses, psychologists, social workers, and, in some countries, non-governmental faith and community-based organisations with access to palliative care expertise.

Original languageEnglish
JournalThe Lancet Respiratory Medicine
Volume5
Issue12
Pages (from-to)968-980
Number of pages13
ISSN2213-2600
DOIs
Publication statusPublished - Dec 2017

    Research areas

  • IDIOPATHIC PULMONARY-FIBROSIS, END-OF-LIFE, RANDOMIZED CONTROLLED-TRIAL, TERMINALLY-ILL PATIENTS, CHRONIC COUGH, DOUBLE-BLIND, GASTROESOPHAGEAL-REFLUX, RETROSPECTIVE COHORT, HEALTH-PROFESSIONALS, AMBULATORY OXYGEN

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