Skip to main content
Log in

Specialist Palliative Care is More Than Drugs: A Retrospective Study of ILD Patients

  • Published:
Lung Aims and scope Submit manuscript

Abstract

Background

This study aimed to assess the palliative care needs of progressive idiopathic fibrotic interstitial lung disease (PIF-ILD) populations in two London ILD centres.

Methods

Patients’ records from Royal Brompton Hospital (RBH) and King’s College Hospital (KCH) were extracted to assess palliative care needs, use of palliative treatments, and whether end-of-life preferences were documented and achieved.

Results

Forty-five PIF-ILD patients were identified (26 RBH, 19 KCH). Patients at RBH were younger (37–81 years, median = 61 years) and predominantly white British (23/26) compared to KCH’s older, more racially diverse population (70–99 years, median = 82 years, 6/19 nonwhite). Seventeen of 45 patients had specialist palliative care team involvement. Nearly all patients (42/45) experienced breathlessness in their last year of life. Additional symptoms included cough, fatigue, depression/anxiety, and chest pain. All patients given opioids (22/45) or benzodiazepines (8/45) had documented benefit. Nonpharmacological treatments were rarely used. Few patients had preferred place of care (8/45) or preferred place of death (6/45) documented.

Conclusions

Despite demographic variation, the patient populations at the two hospitals experienced similar symptoms. There was use of standard pharmacological treatments with symptom benefit. Nonpharmacological interventions were seldom used and documentation of preferred place of care and preferred place of death was poor.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

References

  1. Hubbard R, Johnston I, Coultas DB, Britton J (1996) Mortality rates from cryptogenic fibrosing alveolitis in seven countries. Thorax 51(7):711–716

    Article  PubMed  CAS  Google Scholar 

  2. Johnston I, Britton J, Kinnear W, Logan R (1990) Rising mortality from cryptogenic fibrosing alveolitis. BMJ 301(6759):1017–1021

    Article  PubMed  CAS  Google Scholar 

  3. Hubbard R, Johnston I, Britton J (1998) Survival in patients with cryptogenic fibrosing alveolitis: a population-based cohort study. Chest 113(2):396–400

    Article  PubMed  CAS  Google Scholar 

  4. Hubbard R, Venn A (2002) The impact of coexisting connective tissue disease on survival in patients with fibrosing alveolitis. Rheumatology(Oxford) 41(6):676–679

    Article  CAS  Google Scholar 

  5. Bradley B, Branley HM, Egan JJ, Greaves MS, Hansell DM, Harrison NK et al (2008) Interstitial lung disease guideline: the British Thoracic Society in collaboration with the Thoracic Society of Australia and New Zealand and the Irish Thoracic Society. Thorax 63(Suppl 5):v1–v58

    PubMed  Google Scholar 

  6. National Institute for Health, Clinical Excellence (NICE) (2004) Chronic obstructive pulmonary disease. Management of chronic obstructive disease in adults in primary and secondary care. NICE, London

    Google Scholar 

  7. National Institute for Health, Clinical Excellence (NICE) (2003) Chronic heart failure. Management of chronic heart failure in adults in primary and secondary care. NICE, London

    Google Scholar 

  8. Department of Health (2008) End of life care strategy—Promoting high quality care for all adults at the end of life. London: Department of Health. Available at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277

  9. Curtis JR (2008) Palliative and end-of-life care for patients with severe COPD. Eur Respir J 32(3):796–803

    Article  PubMed  CAS  Google Scholar 

  10. Periyakoil VS, Skultety K, Sheikh J (2005) Panic, anxiety, and chronic dyspnea. J Palliat Med 8(2):453–459

    Article  PubMed  Google Scholar 

  11. Lanuke K, Fainsinger RL, DeMoissac D, Archibald J (2003) Two remarkable dyspneic men: when should terminal sedation be administered? J Palliat Med 6(2):277–281

    Article  PubMed  Google Scholar 

  12. Gillick MR (2009) Potential burdens of low-tech interventions near the end of life. J Pain Symptom Manag 37(3):429–432

    Article  Google Scholar 

  13. Allen S, Raut S, Woollard J, Vassallo M (2005) Low dose diamorphine reduces breathlessness without causing a fall in oxygen saturation in elderly patients with end-stage idiopathic pulmonary fibrosis. Palliat Med 19(2):128–130

    Article  PubMed  Google Scholar 

  14. American Thoracic Society (2000) Idiopathic pulmonary fibrosis: diagnosis and treatment. International consensus statement. American Thoracic Society (ATS), and the European Respiratory Society (ERS). Am J Respir Crit Care Med 161(21):646–664

    Google Scholar 

  15. American Thoracic Society/European Respiratory Society (2002) International Multidisciplinary Consensus Classification of the Idiopathic Interstitial Pneumonias. This joint statement of the American Thoracic Society (ATS), and the European Respiratory Society (ERS) was adopted by the ATS board of directors, June 2001 and by the ERS Executive Committee, June 2001. Am J Respir Crit Care Med 165(2):277–304

    Google Scholar 

  16. Justice AC, Rabeneck L, Hays RD, Wu AW, Bozzette SA (1999) Sensitivity, specificity, reliability, and clinical validity of provider-reported symptoms: a comparison with self-reported symptoms. Outcomes Committee of the AIDS Clinical Trials Group. J Acquir Immune Defic Syndr 21(2):126–133

    PubMed  CAS  Google Scholar 

  17. Edmonds P, Karlsen S, Khan S, Addington-Hall J (2001) A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med 15(4):287–295

    Article  PubMed  CAS  Google Scholar 

  18. Solano JP, Gomes B, Higginson IJ (2006) A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manag 31(1):58–69

    Article  Google Scholar 

  19. Higginson IJ, Sen-Gupta GJ (2000) Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 3(3):287–300

    Article  PubMed  CAS  Google Scholar 

  20. Wells A, Hansell D, Barker R, Devaraj A, Edey A (eds) (2010) A simple prognostic staging system for idiopathic fibrosing lung disease. The Fleischner Society Annual Meeting, Cleveland

    Google Scholar 

  21. Higginson IJ, Finlay IG, Goodwin DM, Hood K, Edwards AG, Cook A et al (2003) Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manag 25(2):150–168

    Article  Google Scholar 

Download references

Conflict of interest

The authors have no conflict of interest to disclose.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Sabrina Bajwah.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Bajwah, S., Higginson, I.J., Ross, J.R. et al. Specialist Palliative Care is More Than Drugs: A Retrospective Study of ILD Patients. Lung 190, 215–220 (2012). https://doi.org/10.1007/s00408-011-9355-7

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00408-011-9355-7

Keywords

Navigation