Recollection of participating in a trial: A qualitative study of patients with severe and very severe chronic obstructive pulmonary disease

Background: Despite having similar palliative needs to patients with lung cancer, advanced chronic obstructive pulmonary disease (COPD) patients are less likely to receive palliative care. To evaluate the effect of introducing specialized palliative care with severe to very severe COPD patients, a randomized controlled trial (RCT) was conducted in Switzerland. Aim: To explore COPD patients’ recollection of the trial, their needs and the usefulness of the palliative care interventions. Design and setting: Qualitative study with advanced COPD patients who participated in a specialized palliative care intervention, conducted in a general hospital. Method: Eighteen patients with severe to very severe COPD were interviewed about their experiences. Interviews were transcribed and thematic content analysis was performed. Results: Patients had poor recollection of the trial and difficulties understanding the palliative care intervention. No major differences were observed between patients who received the specialized intervention and those who did not. Content analysis emphasized that although they experienced disabling symptoms, participants tended to attribute their limitations to problems other than COPD and some declared that they were not sick. Patients reported restrictions due to oxygen therapy, and the burden of becoming dependent on it. This dependence resulted in intense anxiety, leading participants to focus on the present only. A strong feeling of perceived helplessness emerged from the patients’ interviews. Conclusions: Our findings suggest that poor recollection and understanding of the palliative care intervention act as barriers to the conduct of clinical trials with severe and very severe COPD patients. Their cognitive difficulties, perception of COPD, functional limitations, overwhelming anxiety, focus on the present and perceived helplessness also seem to hinder the implementation of such care.