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Breathlessness and crises in the context of advanced illness: A comparison between COPD and lung cancer patients

Published online by Cambridge University Press:  13 February 2014

Christine Dunger
Affiliation:
Institute of Ethics and Communication in Health Care, University of Witten/Herdecke, 58453 Witten, Germany
Irene J. Higginson
Affiliation:
King's College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, London SE5 9PJ, United Kingdom
Marjolein Gysels
Affiliation:
Amsterdam Institute of Social Science Research, Amsterdam, The Netherlands
Sara Booth
Affiliation:
Palliative Care Team, Addenbrooke's Hospital, Cambridge CB2 0QQ, United Kingdom
Steffen T. Simon
Affiliation:
King's College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, London SE5 9PJ, United Kingdom Department of Palliative Medicine and Clinical Trials Center (BMBF 01KN0706), University Hospital Cologne, 50924 Cologne, Germany Institute of Palliative Care, 26121 Oldenburg, Germany
Claudia Bausewein*
Affiliation:
King's College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, London SE5 9PJ, United Kingdom Department of Palliative Medicine, University of Munich, 81377 Munich, Germany
*
Address correspondence and reprint requests to: Claudia Bausewein, Department of Palliative Medicine, Munich University Hospital, Marchioninistr. 15, 81377 Munich. E-mail: [email protected].

Abstract

Objective:

The objective of this study was to explore and contrast the experience and meaning of breathlessness in patients with chronic obstructive pulmonary disease (COPD) or lung cancer at the end of life.

Method:

We conducted a qualitative study embedded in a longitudinal study using topic-guided in-depth interviews with a purposive sample of patients suffering from breathlessness affecting their daily activities due to advanced (primary or secondary) lung cancer or COPD stage III/IV. All interviews were audiotaped, transcribed verbatim, and analyzed using framework analysis.

Results:

Ten COPD and eight lung cancer patients were interviewed. Both groups reported similarities in their experience. These included exertion through breathlessness throughout the illness course, losses in their daily activities, and the experience of breathlessness leading to crises. The main difference was the way in which patients adapted to their particular illness experience and the resulting crises over time. While COPD patients more likely sought to get their life with breathlessness under control, speaking of daily living with breathlessness under certain conditions, the participating lung cancer patients often faced the possibility of death and expressed a need for security.

Significance of Results:

Breathlessness leads to crises in patients with advanced disease. Although experiences of patients are similar, reactions and coping mechanisms vary and are more related to the disease and the stage of disease.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Abernethy, A.P. & Wheeler, J.L. (2008). Total dyspnoea. Current Opinions in Supportive and Palliative Care, 2, 110113.CrossRefGoogle ScholarPubMed
American Thoracic Society (1999). Dyspnea: Mechanisms, assessment and management. A consensus statement. American Journal of Respiratory and Critical Care Medicine, 159, 321340.Google Scholar
Bausewein, C., Booth, S., Gysels, M., et al. (2010 a). Individual breathlessness trajectories do not match summary trajectories in advanced cancer and chronic obstructive pulmonary disease: Results from a longitudinal study. Palliative Medicine, 24(8), 777786.CrossRefGoogle Scholar
Bausewein, C., Booth, S., Gysels, M., et al. (2010 b). Understanding breathlessness: Cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. Journal of Palliative Medicine, 13, 11091118.Google Scholar
Booth, S., Silvester, S. & Todd, C. (2003). Breathlessness in cancer and chronic obstructive pulmonary disease: Using a qualitative approach to describe the experience of patients and carers. Palliative & Supportive Care, 1, 337344.Google Scholar
Booth, S., Bausewein, C., Higginson, I., et al. (2009). Pharmacological treatment of refractory breathlessness. Expert Review of Respiratory Medicine, 3, 2136.Google Scholar
Broberger, E., Tishelman, C., von Essen, E.L., et al. (2007). Spontaneous reports of most distressing concerns in patients with inoperable lung cancer: At present, in retrospect and in comparison with EORTC-QLQ-C30 + LC13. Quality of Life Research, 16, 16351645.Google Scholar
Cleland, J.A., Lee, A.J. & Hall, S. (2007). Associations of depression and anxiety with gender, age, health-related quality of life and symptoms in primary care COPD patients. Family Practice, 24, 217223.CrossRefGoogle ScholarPubMed
Exley, C., Field, D., Jones, L., et al. (2005). Palliative care in the community for cancer and end-stage cardiorespiratory disease: The views of patients, lay-carers and healthcare professionals. Palliative Medicine, 19, 7683.CrossRefGoogle Scholar
Geraci, J.M., Tsang, W., Valdres, R.V., et al. (2006). Progressive disease in patients with cancer presenting to an emergency room with acute symptoms predicts short-term mortality. Supportive Care in Cancer, 14, 10381045.CrossRefGoogle Scholar
Gysels, M. & Higginson, I.J. (2008). Access to services for patients with chronic obstructive pulmonary disease: The invisibility of breathlessness. Journal of Pain and Symptom Management, 36, 451460.Google Scholar
Gysels, M.H. & Higginson, I.J. (2009). Caring for a person in advanced illness and suffering from breathlessness at home: Threats and resources. Palliative & Supportive Care, 7, 153162.Google Scholar
Gysels, M. & Higginson, I.J. (2010). The experience of breathlessness: The social course of chronic obstructive pulmonary disease. Journal of Pain and Symptom Management, 39, 555563.Google Scholar
Gysels, M.H. & Higginson, I.J. (2011). The lived experience of breathlessness and its implications for care: A qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliative Care, 10, 15.CrossRefGoogle Scholar
Gysels, M., Bausewein, C. & Higginson, I.J. (2007). Experiences of breathlessness: A systematic review of the qualitative literature. Palliative & Supportive Care, 5, 281302.Google Scholar
Heinzer, M.M., Bish, C. & Detwiler, R. (2003). Acute dyspnea as perceived by patients with chronic obstructive pulmonary disease. Clinical Nursing Research, 12, 85101.Google Scholar
Lynn, J., Ely, E.W., Zhong, Z., et al. (2000). Living and dying with chronic obstructive pulmonary disease. Journal of the American Geriatrics Society, 48, S91100.Google Scholar
Mays, N. & Pope, C. (2000). Qualitative research in health care: Assessing quality in qualitative research. BMJ, 320, 5052.Google Scholar
Nauck, F. & Alt-Epping, B. (2008). Crises in palliative care: A comprehensive approach. The Lancet Oncology, 9, 10861091.CrossRefGoogle ScholarPubMed
Pinnock, H., Kendall, M., Murray, S.A., et al. (2011). Living and dying with severe chronic obstructive pulmonary disease: Multi-perspective longitudinal qualitative study. BMJ, 342, d142.CrossRefGoogle ScholarPubMed
Ramsenthaler, C., Scheve, C., Bausewein, C., et al. (2012). Typische Krisen und Bedürfnisse von Patienten mit COPD oder Lungenkrebs im letzten Lebensjahr—eine Literaturübersicht. Zeitschrift für Palliativmedizin, 13(3), 134141.Google Scholar
Roberts, D.K., Thorne, S.E. & Pearson, C. (1993). The experience of dyspnea in late-stage cancer: Patients' and nurses' perspectives. Cancer Nursing, 16(4), 310320.CrossRefGoogle ScholarPubMed
Rocker, G.M., Sinuff, T., Horton, R., et al. (2007). Advanced chronic obstructive pulmonary disease: Innovative approaches to palliation. Journal of Palliative Medicine, 10, 783797.Google Scholar
Saunders, C. (1964). Care of patients suffering from terminal illness at St. Joseph's Hospice, Hackney, London. Nursing Mirror, 14, viix.Google Scholar
Solano, J.P., Gomes, B. & Higginson, I.J. (2006). 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, 31, 5869.CrossRefGoogle ScholarPubMed
Spencer, L., Ritchie, J. & O'Connor, W. (2003). Carrying out qualitative analysis. In Qualitative research practice. Ritchie, J. & Lewis, J. (eds.), pp. 219262. London: Sage Publications.Google Scholar