Patients with severe and very severe COPD : a qualitative study
S. Pautex1, C. Veron2, C. Weber2, J. P. Janssens2, C. Cedraschi2 (1Thônex ; 2Genève)
The unpredictable illness trajectory of COPD makes it difficult to determine prognosis and can be a barrier to the provision of palliative care for these patients. Despite having similar palliative needs to patients with lung cancer, studies have shown that COPD patients are much less likely to receive palliative care services than patients with lung cancer
To understand the experience of advanced chronic obstructive pulmonary disease (COPD) patients with a specialised palliative care consultation
Qualitative study with advanced COPD patients who participated in an intervention aiming at specialised palliative care. Semi-structured interviews were conducted about the patients’ experiences. Interviews were transcribed and thematic content analysis was performed
18 patients with severe to very severe (Global Initiative for Chronic Obstructive Lung Disease (GOLD) III/IV) COPD.
No major differences were observed between patients who received a specialised palliative care intervention and those who beneficiated from standard care. Patients had difficulties understanding and remembering the palliative care intervention and did not seem to have benefited from it.
Six key themes were identified: “nothing was done for me”; “I’m not sick”; functional limitations; overwhelming anxiety; focus on the present and perceived helplessness. Even though they experienced disabling symptoms, participants tended to attribute their limitations to problems other than COPD and some declared that they were not sick. The majority of patients reported major restrictions, because of dyspnea and/or oxygen therapy. Participants emphasized the burden of becoming dependent on others and on oxygen to function. This dependance resulted in intense anxiety, leading participants to focus on the present, and avoid discussions about end-of-life issues. A strong feeling of perceived helplessness emerged from the patients’ interviews.
Various barriers hinder the introduction of palliative care for COPD patients. Our findings suggest that to be able to benefit from such care, patients need to better understand their disease, prognosis and care. Common objectives among healthcare providers should be set in order to avoid conflicting messages and contribute to more adapted care. The use of qualitative research could provide insights on the most appropriate palliative care interventions for subgroups of patients.