The Experience of Breathlessness: The Social Course of Chronic Obstructive Pulmonary Disease
Accepted 29 August 2009.
Abstract
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.
aPalliative Care Policy & Rehabilitation, School of Medicine, King's College London, London, United Kingdom
bBarcelona Centre for International Health Research, Hospital Clinic–University of Barcelona, Barcelona, Spain
Address correspondence to: Marjolein Gysels, BA, MA, PhD, Barcelona Centre for International Health Research, Hospital Clinic–University of Barcelona, Rosselló 132 sobreático, 08036 Barcelona, Spain.
This research was made possible through funding from Cicely Saunders International.
ABSTRACT