The silence of patients with end-stage COPD: a qualitative study

BACKGROUND: Patients with end-stage chronic obstructive pulmonary disease (COPD) experience poor quality of life and considerable problems in daily life. However, as they often do not actively express a wish for help, they do not get the help they need. AIM: To gain insight into why patients with end-stage COPD tend not to express a wish for help. DESIGN OF STUDY: Prospective qualitative study with semi-structured interviews. SETTING: Outpatient clinics of four hospitals and one centre specialising in asthma and COPD in the Netherlands. METHOD: Sixteen semi-structured interviews were conducted with 11 patients with end-stage COPD. RESULTS: To express a wish for help, patients should regard their limitations as abnormal and should realise that there are possibilities to improve their situation. However, this was not the case with the patients interviewed. They appeared to consider themselves ill at a time of acute exacerbation of their illness, but regarded their everyday life as normal. In addition, patients lived with the assumption that, as their lungs were damaged beyond repair, they could not get help. CONCLUSION: Patients with end-stage COPD do not actively express a wish for help because they do not consider their limitations to be abnormal and because they do not realise that there are possibilities to improve their situation. These results suggest that care in this stage of the disease should focus on improving daily life instead of just aiming to improve the functioning of the lungs. Professionals in health care should actively explore what kind of practical help these patients might welcome in keeping up their daily activities. Future research should focus on studying whether such an approach applies to the needs of patients with end-stage COPD