Have a personal or library account? Click to login
Perspectives on Palliative Care Approaches in People with Advanced COPD: A Qualitative Study of Patients Attending a Breathe Easy Clinic and Day Hospice Cover

Perspectives on Palliative Care Approaches in People with Advanced COPD: A Qualitative Study of Patients Attending a Breathe Easy Clinic and Day Hospice

Open Access
|Mar 2025

References

  1. 1Mathers CD, Loncar D. Projections of global mortality and burden of disease from 2002 to 2030. PloS Med. 2006; 3: e442. DOI: 10.1371/journal.pmed.0030442
  2. 2GOLD. Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Pulmonary Disease: 2023 Report. Global Initiative for Chronic Obstructive Lung Disease; 2022.
  3. 3Celli B, Fabbri L, Criner G, Martinez FJ, Mannino D, Vogelmeier C, et al. Definition and Nomenclature of Chronic Obstructive Pulmonary Disease: Time for Its Revision. American Journal of Respiratory and Critical Care Medicine. 2022; 206(11): 131725. DOI: 10.1164/rccm.202204-0671PP
  4. 4Rothnie KJ, Müllerová H, Smeeth L, Quint JK. Natural history of chronic obstructive pulmonary disease exacerbations in a general practice-based population with chronic obstructive pulmonary disease. American Journal of Respiratory and Critical Care Medicine. 2018; 198(4): 46471. DOI: 10.1164/rccm.201710-2029OC
  5. 5Ferris FD, Bruera E, Cherny N, Cummings C, Currow D, Dudgeon D, et al. Palliative cancer care a decade later: Accomplishments, the need, next steps—from the American Society of Clinical Oncology. Journal of Clinical Oncology. 2009; 27(18): 30528. DOI: 10.1200/jco.2008.20.1558
  6. 6Narsavage GL, Chen YJ, Korn B, Elk R. The potential of palliative care for patients with respiratory diseases. Breathe (Sheff). 2017; 13(4): 27889. DOI: 10.1183/20734735.014217
  7. 7Pinnock H, Kendall M, Murray SA, Worth A, Levack P, Porter M, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ. 2011; 342: d142. DOI: 10.1136/bmj.d142
  8. 8Choi JY, Rhee CK. Diagnosis and treatment of early chronic obstructive lung disease (COPD). Journal of Clinical Medicine. 2020; 9(11). DOI: 10.3390/jcm9113426
  9. 9Kostikas K, Loefroth E, Fogel R, Clemens A, Gutzwiller F, Kottakis I, et al. Clinical consequences of late Chronic Obstructive Pulmonary Disease (COPD) diagnosis compared to early diagnosis in UK primary care. European Respiratory Journal. 2019; 54(suppl 63): PA2497. DOI: 10.1183/13993003.congress-2019.PA2497
  10. 10WHO. Palliative care: World Health Organization; 2020 [updated 5 August 2020]. Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care.
  11. 11Bloom CI, Slaich B, Morales DR, Smeeth L, Stone P, Quint JK. Low uptake of palliative care for COPD patients within primary care in the UK. European Respiratory Journal. 2018; 51(2): 1701879. DOI: 10.1183/13993003.01879-2017
  12. 12Halpin DMG. Palliative care for people with COPD: effective but underused. European Respiratory Journal. 2018; 51(2): 1702645. DOI: 10.1183/13993003.02645-2017
  13. 13Inbadas H, Carrasco JM, Gillies M, Clark D. The level of provision of specialist palliative care services in Scotland: an international benchmarking study. BMJ Support Palliative Care. 2018; 8(1): 8792. DOI: 10.1136/bmjspcare-2016-001301
  14. 14Radbruch L, Payne S. White Paper on standards and norms for hospice and palliative care in Europe: part 1. European Journal of Palliative Care. 2009; 16: 27889.
  15. 15Scheerens C, Beernaert K, Pype P, Cohen J, Deliens L, Chambaere K. Comparing the use and timing of palliative care services in COPD and lung cancer: a population-based survey. European Respiratory Journal. 2018; 51(5): 1702405. DOI: 10.1183/13993003.02405-2017
  16. 16Kayyali R, Odeh B, Frerichs I, Davies N, Perantoni E, D’Arcy S, et al. COPD care delivery pathways in five European Union countries: mapping and health care professionals’ perceptions. International Journal of Chronic Obstructive Pulmonary Disease. 2016; 11: 28318. DOI: 10.2147/copd.S104136
  17. 17Gamondi C, Larkin P, Payne S. Core competencies in palliative care: an EAPC white paper on palliative care education: part 2. European Journal of Palliative Care. 2013; 20(3): 1405.
  18. 18Faull C, Blankley K. Palliative Care. 2nd ed. UK: Oxford University Press; 2015. DOI: 10.1093/med/9780198702412.001.0001
  19. 19Coyle N, Paice JA. Oxford textbook of palliative nursing. 4th ed. New York: Oxford University Press; 2015.
  20. 20Gaertner J, Frechen S, Sladek M, Ostgathe C, Voltz R. Palliative care consultation service and palliative care unit: why do we need both? Oncologist. 2012; 17(3): 42835. DOI: 10.1634/theoncologist.2011-0326
  21. 21Hayle C, Coventry PA, Gomm S, Caress AL. Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: a qualitative study. Palliative Medicine. 2013; 27(9): 8618. DOI: 10.1177/0269216313486719
  22. 22Véron C, Pautex S, Weber C, Janssens JP, Cedraschi C. Recollection of participating in a trial: A qualitative study of patients with severe and very severe chronic obstructive pulmonary disease. PLoS One. 2018; 13(9): e0204701. DOI: 10.1371/journal.pone.0204701
  23. 23Bausewein C, Schunk M, Schumacher P, Dittmer J, Bolzani A, Booth S. Breathlessness services as a new model of support for patients with respiratory disease. Chronic Respiratory Disease. 2018; 15(1): 4859. DOI: 10.1177/1479972317721557
  24. 24Booth S, Moffat C, Farquhar M, Higginson IJ, Burkin J. Developing a breathlessness intervention service for patients with palliative and supportive care needs, irrespective of diagnosis. Journal of Palliative Care. 2011; 27(1): 2836. DOI: 10.1177/082585971102700106
  25. 25Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: A randomised controlled trial. Lancet Respiratory Medicine. 2014; 2(12): 97987. DOI: 10.1016/s2213-2600(14)70226-7
  26. 26Hashem F, Merritt R. Supporting patients self-managing respiratory health: a qualitative study on the impact of the Breathe Easy voluntary group network. ERJ Open Research. 2018; 4(1). DOI: 10.1183/23120541.00076-2017
  27. 27Higginson IJ, Hart S, Silber E, Burman R, Edmonds P. Symptom prevalence and severity in people severely affected by multiple sclerosis. Journal of Palliative Care. 2006; 22(3): 15865. DOI: 10.1177/082585970602200306
  28. 28Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. Journal of Pain and Symptom Management. 2006; 31: 5869. DOI: 10.1016/j.jpainsymman.2005.06.007
  29. 29Duenk RG, Verhagen C, Bronkhorst EM, van Mierlo P, Broeders M, Collard SM, et al. Proactive palliative care for patients with COPD (PROLONG): a pragmatic cluster controlled trial. International Journal of Chronic Obstructive Pulmonary Disease. 2017; 12: 2795806. DOI: 10.2147/copd.S141974
  30. 30Rush B, Hertz P, Bond A, McDermid RC, Celi LA. Use of palliative care in patients with end-stage COPD and receiving home oxygen: national trends and barriers to care in the United States. Chest. 2017; 151(1): 416. DOI: 10.1016/j.chest.2016.06.023
  31. 31Zhou HX, Ou XM, Tang YJ, Wang L, Feng YL. Advanced chronic obstructive pulmonary disease: innovative and integrated management approaches. Chinese Medical Journal. 2015; 128(21): 29529. DOI: 10.4103/0366-6999.168073
  32. 32Marx G, Nasse M, Stanze H, Boakye SO, Nauck F, Schneider N. Meaning of living with severe chronic obstructive lung disease: A qualitative study. BMJ Open. 2016; 6(12): e011555. DOI: 10.1136/bmjopen-2016-011555
  33. 33Alexander JA, Hearld LR, Mittler JN, Harvey J. Patient–physician role relationships and patient activation among individuals with chronic illness. Health Services Research. 2012; 47(3pt1): 120123. DOI: 10.1111/j.1475-6773.2011.01354.x
  34. 34Greene J, Hibbard JH. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. Journal of General Internal Medicine. 2012; 27(5): 5206. DOI: 10.1007/s11606-011-1931-2
  35. 35Bayin Donar G, Top M. A conceptual framework of quality of life in chronic kidney disease in Turkey: A patient-focused approach. The International Journal of Health Planning and Management. 2020; 35(6): 133550. DOI: 10.1002/hpm.3038
  36. 36Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, et al. The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial. Trials. 2016; 17: 185. DOI: 10.1186/s13063-016-1304-6
  37. 37Bradshaw C, Atkinson S, Doody O. Employing a qualitative description approach in health care research. Global Qualitative Nursing Research. 2017; 4: 2333393617742282. DOI: 10.1177/2333393617742282
  38. 38Tashakkori A, Teddlie C. Handbook of Mixed Methods in Social & Behavioral Research. 2nd ed. Sage; 2010. DOI: 10.4135/9781506335193
  39. 39Creswell JW, Plano Clark VL. Designing and conducting mixed methods research. 3rd ed. Thousand Oaks, CA: Sage; 2017.
  40. 40Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007; 19(6): 34957. DOI: 10.1093/intqhc/mzm042
  41. 41Hennink MM, Kaiser BN, Marconi VC. Code saturation versus meaning saturation: How many interviews are enough? Qualitative Health Research. 2017; 27(4): 591608. DOI: 10.1177/1049732316665344
  42. 42Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Quality and Quantity. 2018; 52(4): 1893907. DOI: 10.1007/s11135-017-0574-8
  43. 43Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Medical Research Methodology. 2013; 13(1): 117. DOI: 10.1186/1471-2288-13-117
  44. 44Meffert C, Hatami I, Xander C, Becker G. Palliative care needs in COPD patients with or without cancer: An epidemiological study. European Respiratory Journal. 2015; 46(3): 66370. DOI: 10.1183/09031936.00208614
  45. 45Vogelmeier CF, Criner GJ, Martinez FJ, Anzueto A, Barnes PJ, Bourbeau J, et al. Global strategy for the diagnosis, management, and prevention of chronic obstructive lung disease 2017 Report. GOLD Executive Summary. American Journal of Respiratory and Critical Care Medicine. 2017; 195(5): 55782. DOI: 10.1164/rccm.201701-0218PP
  46. 46Strutt R. When to refer patients with advanced COPD to palliative care services. Breathe. 2020; 16(3): 200061. DOI: 10.1183/20734735.0061-2020
  47. 47Reilly CC, Bausewein C, Pannell C, Moxham J, Jolley CJ, Higginson IJ. Patients’ experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey. Palliative Medicine. 2016; 30(3): 31322. DOI: 10.1177/0269216315600103
  48. 48Fu Y, Mason A, Boland AC, Linklater G, Dimitrova V, Doñate-Martínez A, et al. Palliative care needs and integration of palliative care support in chronic obstructive pulmonary disease (COPD): a qualitative study. Chest. 2021; 159(6): 222232. DOI: 10.1016/j.chest.2020.12.055
  49. 49Roditi D, Robinson ME. The role of psychological interventions in the management of patients with chronic pain. Psychology Research and Behavior Management. 2011; 4: 419. DOI: 10.2147/prbm.S15375
  50. 50van Mook WN, Gorter SL, Kieboom W, Castermans MG, de Feijter J, de Grave WS, et al. Poor professionalism identified through investigation of unsolicited healthcare complaints. Postgraduate Medical Journal. 2012; 88(1042): 44350. DOI: 10.1136/postgradmedj-2011-130083
  51. 51Partridge MR, dal Negro RW, Olivieri D. Understanding patients with asthma and COPD: insights from a European study. Primary Care Respiratory Journal. 2011; 20(3): 31523. DOI: 10.4104/pcrj.2011.00056
  52. 52Celli B, Blasi F, Gaga M, Singh D, Vogelmeier C, Pegoraro V, et al. Perception of symptoms and quality of life – comparison of patients’ and physicians’ views in the COPD MIRROR study. International Journal of Chronic Obstructive Pulmonary Disease. 2017; 12: 218996. DOI: 10.2147/COPD.S136711
  53. 53Lindgren S, Storli SL, Wiklund-Gustin L. Living in negotiation: patients’ experiences of being in the diagnostic process of COPD. International Journal of Chronic Obstructive Pulmonary Disease. 2014; 9: 44151. DOI: 10.2147/copd.S60182
  54. 54Habraken JM, Pols J, Bindels PJ, Willems DL. The silence of patients with end-stage COPD: a qualitative study. British Journal of General Practice. 2008; 58(557): 8449. DOI: 10.3399/bjgp08X376186
  55. 55Sobradillo P, Iguiñiz M, Tejada S, Malanda N, Imizcoz M, Marlasca L, et al. Management of COPD in End-of-Life Care by Spanish Pulmonologists. COPD: Journal of Chronic Obstructive Pulmonary Disease. 2018; 15: 16. DOI: 10.1080/15412555.2018.1441274
  56. 56Ellison L, Gask L, Bakerly ND, Roberts J. Meeting the mental health needs of people with chronic obstructive pulmonary disease: a qualitative study. Chronic Illness. 2012; 8(4): 30820. DOI: 10.1177/1742395312449754
DOI: https://doi.org/10.5334/ijic.7748 | Journal eISSN: 1568-4156
Language: English
Submitted on: Sep 20, 2023
Accepted on: Mar 15, 2025
Published on: Mar 28, 2025
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 4 issues per year

© 2025 Barbara Gonçalves, Joanne Lusher, Audrey Cund, Caroline Sime, Eileen Harkess-Murphy, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.