The experience of breathlessness: the social course of chronic obstructive pulmonary disease

J Pain Symptom Manage. 2010 Mar;39(3):555-63. doi: 10.1016/j.jpainsymman.2009.08.009.


Context: There is a trend toward extending palliative care to nonmalignant diseases. There is no evidence that chronic obstructive pulmonary disease (COPD) requires its own model.

Objectives: The aim of this study was to investigate how the experience of breathlessness in COPD influences patients' attitudes toward the end of life and their quality of life.

Methods: Eighteen patients were purposively sampled. Data were collected through in-depth interviews and participant observation during outpatient consultations. Narrative methods were used to analyze the data.

Results: Treatment-seeking in COPD deviated from prototypical trajectories. Contact with health care was postponed to crisis point. Treatment did not follow diagnosis because of how the diagnosis was given. Help was sought when the symptom had acquired meaning in a person's life. The future did not feature in the interviews.

Conclusion: Good communication practices are fundamental in the care for COPD patients. Particularly, diagnosis and prognosis need to be rethought in a model to suit the condition of COPD.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Attitude
  • Disease Progression
  • Female
  • Humans
  • Male
  • Middle Aged
  • Palliative Care
  • Patient Acceptance of Health Care
  • Pulmonary Disease, Chronic Obstructive / physiopathology*
  • Quality of Life*
  • Respiratory Mechanics / physiology*
  • Terminal Care