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

Abstract

BackgroundDespite 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.AimTo explore COPD patients’ recollection of the trial, their needs and the usefulness of the palliative care interventions.Design and settingQualitative study with advanced COPD patients who participated in a specialized palliative care intervention, conducted in a general hospital.MethodEighteen patients with severe to very severe COPD were interviewed about their experiences. Interviews were transcribed and thematic content analysis was performed.ResultsPatients 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.ConclusionsOur 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.

Addressing the needs of terminally-ill patients in Bosnia-Herzegovina: patients’ perceptions and expectations

“…Little information exists on existing services [ 27 ]. Here we have focused on the patients’ needs and perceptions to provide insights into the most adequate interventions [ 28 ]. The results of this study, in addition to further investigations about perceptions of care providers, social workers, volunteers and municipal authorities, will serve as the basis for developing acceptable, feasible and sustainable solutions, involving all stakeholders.…”

Psychosocial Interventions for Patients with Severe COPD—An Up-to-Date Literature Review

“…Recent studies brought a basic taxonomy of palliative care in advanced COPD [27]. Still, some unresolved issues remain and need to be addressed if palliative care is to be standardised and widely recommended [7,15,19]. The early introduction of palliative care is under investigation, as studies so far identified existing barriers, but not necessarily particular benefits for patients [18].…”

“…Participants in the intervention group admitted, however, a lessened impact of COPD symptoms and a more positive attitude towards advanced care planning at some point during the intervention [19]. Importantly, recollection of participating in an early palliative care intervention for severe and very severe COPD patients was poor [7]. In turn, an intervention that was highly valued by patients suffering from breathlessness was based on integrative respiratory and palliative care that assured active symptom management, individualised education and advanced care planning [21].…”

“…The precise analysis of patients’ illness stages and the treatment role in all interventions’ assessments are urgent needs that warrant quality, evidence-based data, which is unavailable currently. COPD patients with distinct therapies have experiences characteristic of their treatment group [6,7,61]. Thus, it is difficult to understand the methodological approach in some studies where, despite a small sample size, the patients’ treatments, or even COPD stages, are neither provided nor included in analyses [57,62].…”

“…In the course of the degradation of the lung tissue and airflow limitations, the gas exchange impairment increases and chronic respiratory failure develops. The introduction of long-term oxygen treatment (LTOT) and home non-invasive ventilation (NIV) may improve survival and have the potential to influence health related quality of life (HRQoL) [5,6] Nevertheless, too often patients feel restrained by and dependent on LTOT/NIV [7]. Not surprisingly, emotional problems [8] or worsening of spiritual well-being [9] is coincident with illness progression.…”